Sean Hillman, Department for the Study of Religion
UNIVERSITY OF TORONTO
Masters Thesis 2011 (Buddhist Studies/Bioethics)
Table of Contents
1. Introduction 3
2. Contextualizing
Buddhist Perspectives
on Death,
Karma and Rebirth 4
3. Tibetan
Buddhist Consciousness
Transference
Ritual (phowa) 8
Death Practice 9
Phowa in the Tibetan Book of the
Dead:
Training Before Death 14
Actual Application at Death: Five types of phowa 18
4. A
Buddhist Death in a Catholic Hospital
Methodology 24
Case
Study Applying Two Ethical Decision-Making
Frameworks:
Butcher and IDEA 28
(a) Setting
the stage and determining the problems 29
(b) Problems 35
1)
HCP interference with patient’s unique
religious wishes
2) Patient and SDM communication difficulties
3)
Pronouncing death without physical
assessment
(c) Issues 40
(d) Stakeholders 48
(e) Options and Assessments 51
5. Conclusion 60
6. References 64
Introduction
This Masters thesis is a bioethical
examination of a particular Buddhist death occurrence in a Catholic hospital.
It was an actual event that I was involved with in the not-so-distant past both
as a participant and an observer. The key moments of the process of the
Buddhist patient dying in hospital all focus on one central theme: the
importance of an effective transmigration of consciousness for the patient, or
the passage from life into death, and from death towards rebirth. The
centrality of this theme throughout the study requires a brief opening section
that presents some background for understanding the patient’s Buddhist values
concerning death, karma and rebirth. The pinnacle of the events to be described
is the performance of a Tibetan Buddhist consciousness transference ritual by a
religious specialist and necessitates an outline of this practice as well. This
contextualization of Buddhist concepts and the phowa ritual will be
textual in nature and based on primary Buddhist texts and secondary Buddhist
studies works. Some medical literature will be used to set Buddhist conceptions
of death against those that are biomedical. The bioethical section will begin
with an ethnographic narrative of the event, with a nursing or medical-charting
tone, followed by an analysis that will rely on bioethical literature and
documents such as studies on decision-making and the Catholic Health Ethics
Guide, as well as relevant legislation such as the Health Care Consent Act and
Substitute Decision Act. The analysis will focus on three key problems uncovered
in the narrative: (1) interference with the patient’s unique Buddhist religious
wishes for death-care by Health Care Professionals; (2) communication
difficulties between the interdisciplinary hospital team and the patient and
her family; and (3) the pronouncing of death by the physician without a
physical assessment of the patient based on the patient’s unique Buddhist
religious wishes for death-care.
I wish to acknowledge both the
Department for the Study of Religion and the Joint Centre for Bioethics at the University of Toronto for the opportunity to engage in this
research. Much thanks also to my supervisor Dr. Frances Garrett for her
tireless and ongoing support of my studies, to the Director of the
Collaborative Program in Bioethics Dr. Barbara Secker for her encouragement and
enthusiasm and Dr. Joseph Chandrakanthan for his kind assistance and sitting on
my thesis-committee. Lastly, I have made all players and locations in the
narrative anonymous so I will merely express my deep gratitude in general to
all of the patients that I have ever had the privilege to assist over the
years, and to the various Toronto health care institutions that have allowed me
the opportunity to be of service to the sick, dying and bereaved.
Contextualizing Buddhist Perspectives
on Death, Karma and Rebirth
Although the medical definition of
death is “an irreversible
biological event that consists of permanent cessation of the critical functions
of the organism as a whole (Wijdicks, EFM 2001),” the way that the various
Buddhist traditions conceptualize death is at times both simpler and more
elaborate. Simpler in that the continuance of life can be established by the mere
presence of bodily vitality or heat, and the end of a lifetime can be
determined by the loss of such heat. More elaborate in that the consciousness
of the individual, or the mind, and its continuation after the loss of bodily
vitality is featured prominently in an overall picture of life, death and
rebirth. Karma Lekshe Tsomo, an author of several books on women and ethics in
Buddhism and a teacher at Chaminade University in Honolulu, states that the “minimum requirement…for assuming the
existence of a person…is the existence of consciousness (Tsomo 220).” Although
the mind does not feature at all in a medicalized version of death, ‘consciousness’
does. However, medical usage of the term usually refers to the alertness which
is not present with unconsciousness. When Buddhists refer to ‘mind’ it is not
done synonymously with ‘brain.’ To be sure, brain death might not be accepted by
a Buddhist as a true and final end to an individual’s particular lifetime
because vitality can remain after brain death. A patient in the Intensive Care
Unit on a ventilator who “demonstrates coma, no cerebral response to external
stimuli, and absent brain stem function (Young 2008)” but who has vital signs
such as a pulse and blood pressure is an example of a patient considered to be
medically dead by way of brain-death, but might be said to not yet have cardiac
death. However, “in most countries and most situations, brain death is
considered to be equivalent to cardiopulmonary death (Young 2008).” This is
hard to imagine in our case of the brain-dead ICU patient who maintains vital
signs, but might be easier to accept in light of the fact that even though the
cardiopulmonary system continues to function, without any heroic interventions
such as the ventilator it would necessarily cease. Brain-death, “the complete
and irreversible loss of cerebral and brain stem function (Wijdicks 2001),” is
medically distinguished from
somatic
death...(also known as…physical death, body death)...[and] is characterized by the discontinuance
of cardiac activity and respiration, and eventually leads to the death of all
body cells from lack of oxygen, although for approximately six minutes after
somatic death—a period referred to as clinical death—a person whose vital
organs have not been damaged may be revived.
However, achievements of modern biomedical technology have enabled the
physician to artificially maintain critical functions for indefinite periods. (Dyer 2001-05.)
Buddhists who hold to the loss of
bodily vitality as the defining moment of death would not consider the
brain-dead person with artificially maintained critical functions to be actually
dead. Their view of death comes closer to the medical concepts of cardiac or
somatic death. Damien Keown, a scholar and lecturer in Indian Religion who has
done much work on establishing the relationship between Buddhism, bioethics and
human rights, states that
some
concern does exist among Buddhists concerning the criterion of brain-stem
death… To declare death on the basis of this criterion seems premature to some,
and not in keeping with Buddhist scriptural teachings concerning the point when
death occurs. The ancient sources state that death occurs when three
things - vitality, heat, and consciousness - leave the body (Keown 2004).
Theravada Buddhist thinkers, such as
the 5th century Indian Buddhist scholar Buddhaghosa, accept that “[i]n the
normal state of human death, the body gradually withers away like a green leaf
in the sun, the sense faculties cease, and the consciousness that remains is
supported by the heart-basis alone. This
last moment of consciousness before death is known as the cuti viññāna (McDermott 169).” As a bedside caregiver, it is quite
remarkable to directly experience the heat that remains in the centre of the
chest of a cadaver for quite some time after vital signs become absent, even
though a biomedical explanation of such would be that heat is lost first from
extremities where blood-flow is spread more thinly as opposed to the thorax
containing the heart, the start and end-point of circulation. The Tibetan
Buddhist description of a gathering of vitality and consciousness in the heart
is similar to that of the Theravada shown above, as demonstrated by His Holiness the 14th Dalai Lama,
in the introduction to his chief disciple, the late Ven. Lati Rinpoche’s “Death, Intermediate State and Rebirth:”
The warmth finally gathers at the heart, from which
the consciousness exits. Those particles
of matter, of combined semen and blood, into which the consciousness initially
entered in the mother’s womb at the beginning of the life, become the centre of
the heart; and from that very same point the consciousness ultimately departs
at death. Immediately thereupon, the intermediate state begins... (Rinbochay
9)
This leads us directly to a point of
contrast between some normative Theravada and Tibetan Buddhist views of the
processes that occur after death. An anthroplologist of Sri Lankan Buddhism,
Rita Langer, found that “some of the early Buddhist schools (such as the Sarvāstivādins)
accept the concept of an intermediate state (antarābhava)
(Langer 82),” but for the most part Theravada Buddhists do not accept the
existence of a state between death and rebirth. Rather, as with the Jains, they
conceive of rebirth as an instantaneous occurrence post-mortem. It is
well-known that Tibetan Buddhists, on the other hand, accept an intermediate
state after death, or bardo. This is crucial to this study because the
patient in our case example was a Tibetan Buddhist and had the transference of
consciousness, or phowa, ritual performed on her behalf at the bedside
after clinical death. A major text upon which the phowa ritual to be
explained in the next section is based, the Tibetan Book of the Dead (bardo
thodol), is essentially a guidebook for the experiences in between lives.
Without belabouring the details of the nature of the experience of a being in
between lives, most important for our purposes is that it is commonly held by
Tibetan Buddhists that the quality of a person’s death will determine whether
one experiences the intermediate state or not and the quality of the
intermediate state if one does experience it. By extension, the quality of a
person’s death will also affect the quality of the rebirth one achieves after
the intermediate state is over.
Even
though there is some disparity in Buddhist views regarding the intermediate
state, there is much agreement that this last moment of consciousness before
death, the cuti viññāna, is the most important moment in determining
the quality of whatever follows. As such, there is a grave concern among
Buddhists for controlling as many factors at death-time as possible so that
this last moment of life has a beneficial influence on what is to follow. We
will see this concern for controlling such things as excessive noise and
physical disturbance in our coming narrative of the dying Tibetan Buddhist
patient. Tsomo supports this by recommending that “as long as there is heat in
the body, and a pulse and respiration, or any reflexes, it is best to avoid
disturbing the patient, in case the consciousness is present (Tsomo 187).” H.
H. the Dalai Lama has this to say about the possible downfalls of having people
nearby the dying person:
Sometimes…it happens that others, even though not
purposely seeking to arouse anger, annoy the dying person with their
nervousness, thereby making him or her angry. Sometimes, also, friends and
relatives gather around the bed lamenting in such a manner that they arouse
manifest desire. Whether it be desire or hatred, if one dies within a sinful
attitude to which one is well accustomed, it is very dangerous. (Rinbochay 8)
The outer
environment of the dying person, therefore, can influence their inner environment
by triggering negative emotions and affect the last moment of consciousness before death. This is where
karma, or cause and effect connected to consciousness, becomes most
significant. Because the last moment of consciousness determines the post-death
outcome it activates, as another Tibetan Buddhist scholar-monk puts it, “[p]ropelling or throwing karma [which]
is the karma that has the power to throw us into our future life
(Tsering 77).” Thus, there are two factors that
activate throwing karma: (1) long-standing familiarity with particular
emotions, as H.H. the Dalai Lama mentioned above; and (2) emotions having
proximity to the moment of death. These emotions have been compared to cattle
at the gate of their pen. There are those that are strong and those that are
closest to the gate. Making wholesome emotions, such as contentment and love as
the opposites of the desire and hatred H.H. the Dalai Lama recommended against,
more familiar and occurring as close to death as possible is the goal of the Buddhist
practitioner, including a Tibetan Buddhist like our dying patient.
Although
there is still concern with the quality of the people and environment around
the dying person after death, which leads to such recommendations as leaving
cadavers undisturbed for three days post-mortem, because the last moment of
consciousness is most crucial it is necessary to have means of determining when
death has occurred with the departure of consciousness. In addition to a loss
of heat, which cannot be determined well without touching the body, there are
some other indications that are well-known in the Tibetan Buddhist traditions
that lead to the belief that the consciousness has left. The first are “external
signs of pus or blood emerging from the nose and
sexual organ…indicating the departure of consciousness (Rinbochay 19).” After this, some also hold that “[w]hen the body begins to emit a foul odor, it
is a sure sign that the consciousness is no longer present (Tsomo 159).” These
signs may happen naturally in due course of time, or in conjunction with death
rituals such as phowa. However, in some cases there are Tibetan
Buddhists who feel that the mere performance of the phowa ritual itself is enough to safely establish that the consciousness has left the
body. With that, let us move on to a brief description of the phowa consciousness transference ritual.
Tibetan Buddhist Consciousness
Transference Ritual (phowa)
In the case study of a Buddhist death
in a Toronto Catholic hospital that will follow, one of the key events in the
narrative is the performance of the phowa ritual at the bedside. For
those Tibetan Buddhists who engage in the practice or aim to have it done on
their behalf at death, it is safe to say that it is the most important moment
of the religious practitioner’s entire life. If it positively influences, or is
actually the cause of, the last moment of consciousness, it is believed to have
the possible benefits of an improved rebirth or religious accomplishments which
will be described. Because of this, it could also be said to be the pinnacle of
all of the proceedings in facilitating the unique religious end of life wishes
of the particular patient in our narrative and, as such, it is important to
explain the ritual phowa in some detail.
Phowa is the practice of consciousness
projection during the death process performed by either a specialist on behalf
of a practitioner, or by the practitioner themselves. It also serves as a
preparatory exercise for death that can be performed by any practitioner at any
time before the actual process of dying. Phowa is sometimes performed in
conjunction with other practices such as Chöd during which the
practitioner imagines their consciousness departing, and then visualizes their
now consciousness-free body being offered as sustenance to non-human beings
that are needy. The form of consciousness transference known as phowa is
maintained as a living practice within the Tibetan Buddhist traditions, and
will be examined closely as it appears in the Tibetan Book of the Dead text
credited to the eighth century Indian Pandit Padmasabhava to establish the
method and purpose of phowa. By doing so we can come closer to answering
one of our main questions, whether health care professionals can meet the
religious needs of patients with whom they do not share worldviews, by
discovering the possible intentions of our patient.
Phowa: Consciousness Transference as Death Practice
Jeffrey Hopkins, an American
Tibetologist from the University of Virginia who is a prolific translator, translates
phowa simply as “to move; develop;
progress; transmigrate; pass on; pass away from (Hopkins 285).” Phowa seems to have taken on more than its
(perhaps) original, literal meaning as it is often understood to be “[t]he
practice of consciously leaving the body at the time of death (Waterman 2004).” On closer inspection, it seems that
this is only a partial representation of the practice. It is more accurate to
refer to phowa as having two aspects, that of the “training in
consciousness transference” and “the actual application of consciousness
transference at the time of death” as done by the Indian Pandit Padmasambhava
in The Tibetan Book of the Dead. (Coleman/Jinpa 204-205) The nurse
Marilyn Smith-Stoner, an Associate Professor at California State University
whose extensive work on the needs of dying Buddhists and atheists has added
greatly to end-of-life nursing research, aptures
both aspects of the practice and its outcome in the Journal of Hospice and
Palliative Nursing stating that phowa “is aimed at assisting the
practitioner in transferring consciousness at the moment of death to be reborn
in Buddha Amitabha’s pure land of ‘Great Bliss.’ (Smith-Stoner 357) Robert Thurman,
an American Buddhist writer, academic and translator of great influence and Je
Tsongkhapa Professor of Indo-Tibetan Buddhist Studies at Columbia University, doesn’t differentiate between the
pre-death training and death-time application of the practice when defining phowa.
He adds a tantric element to the human psycho-spiritual system by making
reference to ‘channels’:
Soul-ejection (‘pho
ba) is a practice of forcefully pushing the subtle bodymind of the
practitioner out of the heart center up the central channel and out of the
coarse body into a rebirth in a Buddha-land. This is done to ensure a positive
rebirth in order to continue your practice of the oath of Buddhahood. It can
also be done by a skilled yogin or yogini for the soul of a dying person using
special rituals and visualisations. (Thurman 299)
It is not obvious if
by the term “bodymind” he means wind or consciousness, often the latter being
said to be mounted on the former, or if his term conflates the two. Forgiving
Thurman’s uncommon usage of the term “soul” to designate what is usually
translated as “mind” or “consciousness”, given the normative no-self/no-soul
theory of anātman found in Buddhist traditions,
Thurman
does make it clear that phowa can be done by the practitioner themselves
or by another specialist on their behalf.
Some texts refer specifically to the latter, such as in the following
verse 112 from Panchen Lozang Chokyi Gyaltsen’s The Guru Puja (Bla-ma
Mchod-pa):
Should
we not have completed the points of the path at the time of death,
We
seek your blessings that we may be led to a Pure Land
Through
either the instructions of applying the five forces
Or
by the forceful means of Enlightenment, the Guru’s transference of mind
(la-mä
p’o-wa). (Berzin 42-43, diacritics from original publication)
Consulting the
original Tibetan shows that Alexander Berzin’s translation of la-mä p’o-wa (which
are his diacritics but which is typically transliterated as bla ma'i pho ba)
is accurate in that the word ‘lama’ has the addition of a connective
case before the word ‘phowa’ indicating ‘mind transference of the
Guru.’ One could argue that this means the phowa that a Guru does on
their own behalf, but given the context of the passage (student being led
by the Guru) it is more likely that this means that the Guru is
performing the transference of consciousness on behalf of the student and not
for themselves. This verse also points
to phowa being considered as potentially leading to enlightenment
itself. Jose Cabezón, the XIV Dalai Lama Endowed Chair in Tibetan Buddhism and
Cultural Studies at The University of Wisconsin, too suggests that
enlightenment is necessarily the inevitable outcome, although not immediate,
“when, despite all attempts at ritual intervention, death strikes, there are
rituals…like powa (‘pho ba), the “transference of consciousness,”
that assure rebirth in pure lands, heavenly states where enlightenment is guaranteed
(Cabezón 21).” Here Cabezón also raises the important point of phowa being
a last resort, not to be engaged in haphazardly. We will touch on the specific
circumstances allowing for the actual practice of phowa at the actual
time of death when we look at phowa as presented in the Tibetan Book of
the Dead. In terms of Buddhist views on the efficacy of ritual, we might ask
how it is that there can be a petition as that found in the above passage from
The Guru Puja when the normative position assigned to Buddhism is often that of
self-reliance and non-interference even by a Buddha? Author and former
Professor and Head of Philosophy at the University of Peradeniya, Padmasiri De Silva,
supports this commonly held view. He states that the Pali Buddhist texts show
that “the Buddha...laid emphasis on self-reliance. It is the notion of self- reliance
in the spiritual field…where the Buddha assured that each person has the power
to shape his or her destiny…self-reliance is necessary for progress. Dependence
on others, human or non-human powers, does not assure progress (De Silva 169).”
We could blame the appearance of this other-reliance as a later development in
the Mahayana, or Northern and Sanskrit-based, traditions of Buddhism. It seems,
however, that self-reliance and non-interference is also often the normative stance
in later Mahayana traditions such as that found in the various schools of Tibetan
Buddhism. Pabongka Rinpoche, a Tibetan Buddhist monk-scholar of the Gelug
lineage and considered as one of the greatest Lamas of the twentieth century
and who was the root teacher to both the late tutors of H.H. the 14th
Dalai Lama, is quoted as saying the following during a twenty-one day teaching
in 1921: “If there were some way the Buddhas could rid us of our sins and
obscurations by, say, washing them away with water, or by leading us by the
hand, they would have already done so and we would now have no suffering. They
cannot do this (Pabongka Rinpoche 30).” Cabezón has a suggestion for our
problem with ritual, such as phowa, relying on other-powers:
How
is it possible, on the one hand, that everything experienced in life is the
result of one’s own previous actions (karma), while, on the other, the good and
evil can be the result of spirits freely intervening in human affairs? Is
beseeching a deity for blessings or requesting a spirit to cure one’s illness
consistent with a belief in karma? How can rituals that are enacted by grieving
relatives help a deceased person? Such
theological questions point to fundamental problems within the Tibetan and
Indian worldviews. These issues are not, of course, unknown either
to the elite texts or to less literate traditions, both of which attempt to
resolve them in a variety of ways. Such idealogical problems, however, seem to
have little effect on Tibetans’ attitudes or daily behaviours vis-à-vis the
nonhuman world, or on their belief in the efficacy of ritual. (Cabezón 10)
When considering our Tibetan Buddhist
patient, having the phowa ritual done on her behalf by a ritual expert is
completely in accord with her values and beliefs despite normative Buddhist
views on the ineffectiveness of other-powered intervention even by the
most highly developed spiritual beings, Buddhas themselves. She is gravely
concerned with what will happen after her death, and sure that this experience
will be based on many elements at the time of her death, including ritual
activities like phowa. This is what matters when she decides to have phowa
done on her behalf, not the normative stances.
As with
Cabezón, who we earlier quoted regarding the view that phowa has definitive results, William Stablein, a scholar of tantric Buddhism
from Columbia University, also lends supports to the practice of phowa leading to an utter change in status, beyond
mere rebirth:
Ideally,
as in the Utpattikramayoga of the
Nepalese, the wind is to be directed through a spot (mastaka) in the top of the head. This technique with its
concomitant system of channels has a salvific…value; if the technique is
successful at this dying moment, as the Book
of the Dead states, ‘karma is without its bridling power… The clear light
of the path defeats the power of darkness and there is liberation (Stablein 205).’
The Tibetan Book of
the Dead itself, a text we will soon be looking at more closely, states that
“[t]he aperture of the crown fontanelle is the pathway through which
(consciousness) departs to the pure (realm of the) sky-farers. (Tib. mkha’-spyod-ma, Skt.
[usually dakini but rendered by Dorje as] khecarī) Given this, (it is said that) one will attain liberation if
awareness exits through the (crown fontanelle) (Dorje 214).” There are other sources,
however, which could lead us to question whether the end result of phowa
or leaving via the crown is necessarily a pure land rebirth or enlightenment.
Lati Rinpoche, when discussing the “[m]ode of exit from the body after
death (Lati Rinbochay 53),” states that “if one
is to be reborn in the formless realm, it [the exit] is from the crown of the
head…[as] set forth in the eighth chapter of the Samputa Tantra (Lati Rinbochay 54).” One might conclude from this,
then, that regardless of the cause of exiting by way of the crown, even if it
is the result of phowa, that the highest result
is a formless existence of pure absorption and not birth in a pure land,
Buddha-land or what a recent translator of The Tibetan Book of the Dead, the
Nyingma scholar Gyurme Dorje, refers to as a "Buddha Field [Tib.] zhings-khams,
Skt. [buddha]kṣetra…[which] transcend[s]
the mundane god realms (devaloka) inhabited by sentient beings of the
world-systems of desire, form, and formlessness (Dorje 452, bold font removed
by myself)." To clarify the method
of practice and its intended outcome we will look at five modes of
consciousness transference in Padmasambhava’s
Tibetan Book of the Dead. We will see
that there are different ways of exiting the body during phowa, and
several different possible outcomes also. Based on
these types of consciousness departure and results, we will try to determine
how to best categorize the practice of phowa by a ritual expert at the
bedside in hospital, performed on behalf of the patient in our case study. The
training before death, and actual application of phowa consciousness
transference itself at death, will be looked at separately and as found in
Tibetan Book of the Dead.
Phowa
in the Tibetan Book of the Dead:
Training
Before Death
The introduction to phowa in the
Tibetan Book of the Dead tells us much about
its purpose and those who have the potential to gain from its
implementation:
This Consciousness Transference: Natural Liberation
through Recollection is a powerful method, a means for attaining buddhahood
which does not [necessarily] require meditation. This oral instruction through
which buddhahood can be attained at the time of death is [therefore] most
valuable for those who have not trained… In particular, [it is valuable] for
ordinary persons, officials, householders and distracted individuals who have
had no time to meditate, despite having received those [instructions]…and who,
[as a consequence], may die in an ordinary frame of mind… Since it is said that
[this practice may confer] higher rebirth or liberation even on one who has
committed the five inexpiable crimes, the timely application of consciousness
transference can be of extremely great benefit. (Dorje 200-201)
Here we see three possible outcomes of
the practice of phowa presented: buddhahood, higher rebirth and
liberation. It is not accidental that they are treated separately by
Padmasambhava since it is possible for a bodhisattva on the next-to-highest
spiritual stage (bhumi) to be liberated from cyclic existence and yet
still have subtle obscurations to omniscience that renders them just on the
cusp of buddhahood, but not quite there. Teasing terms apart in such a way
makes it more difficult to follow the tempting habit of treating liberation,
enlightenment, buddhahood and full enlightenment as synonyms rather than
carefully clarifying each as they deserve. That being said, it could be that
Padmasambhava is suggesting that it is within the realm of possibility to
attain buddhahood by way of phowa, but for those who have committed a
heinous crime it is possible only to achieve higher rebirth or liberation at
best.
From the above passage, it is not clear
if everyone who serves to gain from phowa has previously received
instruction. 'Those who have not trained' could be almost anyone. It is also not clear if the practice that
would benefit those mentioned is that done by themselves after reading the
simple instructions that are about to follow in the text, or if it is referring
to phowa being done to them or on their behalf. Is the 'oral
instruction' the contents of the text or the instructions given to the dying
practitioner by the specialist performing phowa to/for them? A closer
look at the original is required to clarify these points. They are questions
worth asking because if 'those who have not trained' does include those who
have not received instruction, it is possible for a person to engage themselves
in the phowa practice about to be described in the text and not have
tantric empowerment (with which comes permission to engage fully with an
otherwise esoteric practice). If this is the case, it could be that the author is
presenting phowa as not being a tantric practice, or that it is a type
of tantric practice that is allowable to non-initiates. There is a precedent for the latter, such as
in the case of The Guru Puja which we saw above.
The title-page of the Library of Tibetan Works and Archives version states (in
bold caps) that “although this puja may be
performed by anyone, an Anuttarayoga Tantra empowerment is required in order to
study the text.” (Berzin 1) Looking at the actual
instructions will also give us some indication as to whether the Tibetan
Book of the Dead aims to present phowa as a tantric practice or not. The
question of phowa as necessarily tantric or not is an important one
because it could give us some indication of the background of our patient. If
it is necessarily tantric, it could mean that our patient had practiced phowa
at some point during her lifetime, or at the very least may have received
empowerment and thus permission to practice. It could also suggest that when
she was still conscious, she may have been engaging in the meditation herself.
If phowa is not necessarily tantric, it might mean that the patient had
no previous direct engagement with the practice and, despite that, felt that
having it performed on her behalf was both allowable and potentially
beneficial.
Here we
will briefly traverse what is found within the instructions for training in
consciousness transference. It begins with encouraging the reader to make
preparations as one does for going to war since the arrival of death is both
inevitable and unpredictable. Some contemplative reflections, attitude
correction and details on posture precede the visualisation of HUM syllables
blocking the orifices, an upside down HAṂ blocking the crown fontanelle, the
central channel and the seminal point at the convergence of the three channels
and the teacher on head. After some more
posture particulars, the practitioner is to start elevating the seminal point
through the central channel with seven guttural gasps (pronounced HI-KA) to bring
it to each crucial junction (navel, heart, throat, between eyebrows) until it
reaches the HAṂ at the crown at which point it is visualized as spinning
downwards back to the starting point below the navel. After some repetition,
when various signs emerge on the crown which indicate that the training is
effective, there is encouragement to stop the practice to prevent limiting the
lifespan and to do certain visualisation and physical exercises if there is
discomfort. Emphasis is given to the fact that the syllable at the crown
prevents the consciousness from exiting during this training phase. It ends by
saying that this phowa training “should be carefully practised while one
is in good health, and before the signs of death emerge (Dorje 201-205).”
The last statement might suggest that
the patient in our case study to follow did not engage in the phowa practice
while in hospital because she knew that she had a teminal illness. It may also
indicate that if the patient did perform the phowa practice herself before
losing consciousness, she might not have considered herself to be dying
imminently. What is interesting about the above instruction is the utter lack
of mention of deities. There are references
to aspects of the subtle body, as also mentioned by Thurman in his definition
of phowa earlier, such as the channels and energy centres or chakras.
There is the visualization of seed syllables. There is the teacher, who is
often meant to be seen as a deity one-in-the-same, but not explicit mention of
the teacher as a deity or deities themselves. We can then ask: can a
practice without tantric deities actually qualify as tantra ? If we look at Michel
Strickmann’s take on tantra, he might answer negatively. Best known for his
scholarship related to China, Bernard Faure (a Professor of Asian
Religions at Stanford University and editor of Strickmann’s two major
works) tells us that
Strickmann
set out to study tantric rituals and beliefs in their broader historical and
cultural contexts. In order to overcome ethnic, linguistic, and sectarian
barriers he attempted in particular to formulate a definition of Tantrism that
took into account…common ritual elements… However, what struck him as
particularly significant was the ritual grammar of Tantrism, a syntax based on
the laws of Indian hospitality: after purifying himself, the officiant would
invite the deity and its retinue into the ritual area, and make offerings to
them. What characterizes Tantric ritual, though, is the fact that the officiant
goes on to unite with the deity. Empowered by this fusion, he is then able to
attain his goal (Strickmann 2005: xvii).
In
Strickmann’s own words:
The focus of the [Tantric Buddhist] movement was on
ritual, and in the course of performing Tantric rituals, the officiant actually
became the Buddha…. This is the common trait of all forms of Tantric practice:
The practitioner propitiates a deity, with whom he proceeds to identify himself
or otherwise unite…This is the basic premise that underlay the entire Tantric
revolution and that distinguished it from the Vedic and post-Vedic phases of
Indian ritual on which it freely drew. (Strickmann 2002: 201)
We saw earlier that Cabezón
also somewhat suggests a natural connection between soteriology and deity
proximity, in that rituals aiming for enlightenment can include requests for outside help, something we do not
necessarily have in our textual excerpt from The Tibetan Book of the Dead. We
could suggest that the syllables in the phowa practice above themselves
are representations of deities, but with no explicit mention of deities this
idea might be reaching too far. I tend to agree with Strickmann’s view of the
defining characteristic of tantra having to do with deity union. As such, it
seems that our patient having phowa done on her behalf was not
necessarily a practitioner of phowa before having it performed on her
behalf by a ritual expert. This is a sign that she might have had faith in the
efficacy of the ritual itself, but perhaps only in conjunction with the
particular religious specialist who performed her last rites: her Lama.
Phowa
in the Tibetan Book of the Dead:
Actual
Application at Death
Next is the instruction for the actual
application of consciousness transference at the time of death which is
sub-divided into six parts: the timing and context, consciousness transference
into the Buddha-bodies of Reality (Tib. chos-ku, Skt. dharmakāya),
Perfect Resource (Tib. longs-spyod rdzogs-pa’i sku, Skt. sambhogakāya)
and Emanation (Tib. sprul-sku, Skt. nirmāṇakāya), that which is
instantaneous and that of ordinary beings. Looking at the five types of phowa,
their methods and intended results, we will get a better idea as to the
type of phowa that the patient might have engaged in herself and that
done by her religious specialist, and for what reasons. In terms of timing and
context The Tibetan Book of the Dead describes that the practice is to be done
only when the signs of impending death are definite and when the ritual
deception of death fails three times. There are two-fold instructions, one for
the practice done by another and that done by oneself. For oneself, when the
approach of death is determined one is to invite the spiritual teacher and
offer to them all possessions, physically or mentally, and confess and reaffirm
vows. If one has some training in phowa, one should assume the posture
and the teacher repeatedly leads the visualisation. Upon expiry, if there are
signs of fluid at the crown, there is success, and if not the teacher then
starts to successively describe the intermediate states into the ear of the
dying practitioner. If the spiritual teacher is not present, phowa can
be lead by a spiritual friend of the same lineage or a spiritual sibling with
upstanding commitments and sympathetic view and conduct. When done alone due to
the unavailability of others, isolation, or a strongly developed phowa
practice, the practitioner resorts to the phowa training they have
developed previously (Dorje 205-208).
Type (1) is that called ‘phowa
into the dharmakāya’ and is recommended for those who
have some direct experience with emptiness (considered to be the ultimate
nature of reality). One takes an upright posture or lying down on the right
side, and prevents distraction by way of engendering altruism, nondualism and
emptiness. Dying in this state, with the meeting of mother and child (reality as
it is and experience of reality as cultivated by the practitioner, as
mentioned earlier), ensures the achievement of the dharmakāya and
liberation. This is said to be the incomparable mode consciousness transference
and impossible for those without experience and realisation. Success results in
the outer sign of the sky becoming clear, the inner sign of lasting bodily
lustre, and secret signs in the form of syllables appearing in relics. (Dorje 208-209)
Here we have
another practice of phowa, but at death-time versus that practiced
before death, and one not involving deities and thus one that might not be
justifiably referred to as ‘tantric.’ It very much has to do with practices
that can be separable from tantra, i.e. positive emotional cultivation and
contemplations. Let us specify the results of this phowa practice. It is
utilized (a) to protect oneself from the harms of a low rebirth, and the practitioner
who has such an ability utilizes it (b) to accomplish buddhahood in dharmakāya (often translated as the Truth
Buddha-body) which we could refer to as a merging with ultimate reality
itself; and liberation or freedom from the cycle of death and rebirth. This is our first instance of the concerns for
a good rebirth and full accomplishment (including freedom from rebirth
entirely) that accompany the practice of phowa at death. It is worth
noting that this form of phowa is the only one that distinguishes
liberation among the results of the practice. It is also one of only three (from
among the five types of phowa in the Tibetan Book of the Dead) that does
not mention having others assisting the practitioner. In terms of her inner
experience and the outer signs of success, we are not sure if our patient
engaged in this type of phowa practice before death. A lying posture is
allowed, so the patient could meet this requirement. However, as we will see in
the case study narrative, she was admitted into hospital with intermittent
mental capacity followed by persistent unconsciousness, which makes her ability
to mentally practice this type of phowa unlikely but perhaps not
impossible. Because she had phowa performed on her behalf, this is not
the type that her Lama performed at the bedside. Nonetheless, it does begin to
indicate what the concerns of our patient at death might be.
Type (2) is ‘phowa into the sambhogakāya’
and is for those who have little experience of emptiness. An upright
posture is encouraged and the elaborate visualization of one’s teacher in sambhogakāya
form, particularly as one’s personal meditational deity. If preferred, the
seminal point can be seen as the seed-syllable of this deity. One blocks the
orifices with the HŪṂ syllable or focuses on the consciousness in the central
channel to the neglect of the orifices. Bodily weight is to be drawn in and
concentrated upwards, and the rectum closed. The HI-KA gasps move the seminal
point to the crown and breaks it open and shoots upwards like an arrow blazing
with white light and dissolves into the heart of the meditational deity, which
is dissolved into emptiness. If one dies in this state, one achieves buddhahood
in sambhogakāya inseparable from the deity. Success results in the outer
sign of the sky being filled with rainbows and light, the inner sign of fluid
from the crown, and secret signs in the form of bone relics (potentially in the
shape of the deity or their hand-implement). (Dorje 209-211)
This form of phowa
is said to a) protect the practitioner from harmful lower existences, and the
practitioner b) utilizes it to accomplish buddhahood
in sambhogakāya (often translated as Enjoyment Buddha-body) inseparable
from the deity. The mention of deities might incline us to consider this a
tantric practice. The concerns in the performance of this type of phowa practice
are similar to the former. A lying
posture is not suggested, so our patient at death would have difficulty meeting
the upright posture requirement. However, as with many other Buddhist
practices, posture is made secondary to the mental components of practice. The
text itself seems quite forgiving of posture by suggesting sitting up only
“[i]f one is capable of securing one’s body in the upright position (Dorje 209),”
thus allowing for the possibility of physical limitations. Although the
visualization is given primacy, the patient is again unlikely to be able to
perform the elaborate visualizations without mental capacity. Plus, this is the
second of three (from among the five) types of phowa in the Tibetan Book
of the Dead that does not mention having others assisting the practitioner. For
these reasons this is also most probably not the type of phowa performed
at our patient’s death. It does, though, reinforce that the concerns with phowa
practice revolve around rebirth and accomplishment and gives more support
in discovering the patient’s intentions behind having phowa as a part of
her death care.
For (3) ‘phowa into the nirmāṇakāya’,
one is to lay on the right side to facilitate the consciousness exiting the
left nostril, and have images or the visualisation of the nirmāṇakāya such
as Śākyamuni or Medicine Buddha. The
practitioner makes physical or mental offerings to them, and makes aspirational
prayers along with others who are present. Visualization is similar to the
training before death but with greater detail, such as the central channel
being translucent, the seminal point being white tinged with red in a triangle
below the navel and known as the essence of one’s awareness. The rectum is
closed and the HI-KA gasps move the seminal point as in the training, but when
it reaches the left nostril it is pushed out like firing an arrow and into the
heart of the nirmāṇakāya located in front of the practitioner. Success results in outer signs such as clouds
and rainbows in auspicious shapes and flower-showers, the inner sign of fluid
from the nose, and secret signs in the form of relics. (Dorje 211-212)
This form of phowa
is quite unique since the mode of exit is the nose. Lati Rinpoche states that “one who is
to be reborn as…a yaksha, [exits from] the nose,” (Lati
Rinbochay 53) but the Tibetan Book of the Dead clarifies this
discrepancy by stating that “[o]ne will…be born as a yakṣa if [consciousness is
transferred] through the right nostril…” (Dorje 214) This
form of phowa (a) protects the practitioner from harmful lower
existences. We assume from the name of this type of phowa that the
practitioner utilizes it (b) to accomplish buddhahood in the nirmāṇakāya (Emanation
Buddha-body) even though the text does not explicitly state the result. The
recommended posture of lying on the right side was that naturally held by our
patient at her death, and this type of phowa requires the assistance of
others. For these reasons, it is very likely that this was the type of phowa
done at the bedside by the religious specialist on behalf of the patient, with
the Lama doing the visualization himself and verbalizing it in the chance that
the patient could possibly follow along mentally. As there is no mention of
deities, if we take this to not be a tantric practice it could be an indication
that the patient was not necessarily a practitioner of
phowa before having it performed on her behalf by a ritual expert. As
suggested earlier, if this was the case she might have had faith in the
efficacy of the ritual itself, but perhaps only in conjunction with the
particular religious specialist who performed her last rites.
Phowa type (4) is ‘instantaneous consciousness
transference’ and is reserved for sudden death where there is no time
to engage in meditations, and is a method that the text encourages to prepare
along with the others since the cause and time of death are unknown. The thrust
is developing familiarity with a resolution to be focused on the crown of the
head at death, and practising having this focus whenever fear arises. If
possible, imagining one’s spiritual teacher or personal meditational deity at
the crown is helpful. Instantaneous consciousness transference is synonymous
with ‘forceful consciousness transference.’ Leaving by this route brings one to
the pure realm of the sky-farers (Tib. mkha’-spyod-ma, Skt. usually dakini
but rendered by Dorje as khecarī). (Dorje 212-214)
This form of phowa
and its preparation are very important, as the text emphasizes, and shows the
vast result that comes merely from the mode of exit.
It b) protects the practitioner
from harmful lower existences and the practitioner b) utilizes it to accomplish
the pure realm of the sky-farers. This was not the type of phowa performed
at the death of our patient because her death was not sudden but expected.
The final type of phowa is the
(5) ‘consciousness transference of ordinary beings’ and is
for those who do not have realisations regarding emptiness and do not have a
tantric meditational practice. How it is
undergone depends on the abilities of the person at the time of death. Laying on their right side, the spiritual teacher
or fellow practitioner encourages them to pay attention, and take refuge,
cultivate altruism and confess. If possible, conferring vows and bestowing
tantric empowerments will enable the person to die with untainted commitments
and thus block lower rebirth. If this is not possible, the text recommends the
helpers to call out the person’s name and alert them to the presence of an
enlightened being on their crown, also gently pulling the hair and stroking
that area. If the person is even worse off, calling out homage to buddhas,
reciting mantras, reading from the Tibetan Book of the Dead and saying
aspirational prayers near the head of the dying person is said to be
helpful. In the worst case, merely being
on the right side helps prevent lower rebirth. (Dorje 214-215)
This phowa
can be (a) utilized to teach or bring about realizations in the dying person,
and can be (b) utilized to protect them from the harm of lower rebirth. Practitioners
can (c) achieve a rebirth concordant with the mode of exit, such as that in a
pure land. In the worst case where the dying person is merely on their right
side, it is difficult even to refer to the practice as a type of phowa
at all. This type of phowa in general serves a wide range of people, but
our patient is probably not one of them. A Tibetan Buddhist her entire life,
she very likely had some familiarity with at least the logic of emptiness,
tantric practices and even possibly phowa itself. It is unlikely to have
been the type of phowa performed at the death of our patient, but it
does distil for us the most basic concerns involved with phowa:
not buddhahood, but rather some degree of the achievement of realizations and a
good rebirth.
From the above
investigation into the five types of Tibetan Buddhist phowa practice as
applied at death, and with the help of foreshadowing some details that will
follow in our case study narrative of the death of a Tibetan Buddhist in a
catholic Hospital, type (3) phowa
into the nirmāṇakāya appears to be the likeliest
candidate for the type of phowa performed at the death of our patient on
her behalf by her Lama at the bedside. Lastly, the most persistent end-results
of phowa have been shown to be gaining realizations and a good rebirth
which would be considered as that of a human who can continue to practice
towards achieving buddhahood, or at least the refined existence of a god. The
latter is not typically seen as conducive towards spiritual progress because it
is highly enjoyable and thus lacks in providing motivation to engage in
religious practice to change oneself for the better.
A Buddhist Death in a Catholic Hospital
Methodology
What follows is an actual case example
of a Tibetan Buddhist patient, of Tibetan descent, who died in hospital and had
the phowa ritual performed on her behalf post-mortem by a Lama at the
bedside. The players in the narrative include the patient, her family members,
the religious expert, the physician, nurses and other caregivers which included
myself. At the time I was an ordained Tibetan Buddhist monastic, and a trained
health care professional (hereafter referred to as HCP in accordance with
bioethical literature such as Sibbald and Chidwick 2010), who knew all of the
players and who cared for the patient and assisted the patient and family in
negotiating a Buddhist death in a Catholic hospital. In the narrative I refer
to myself directly and as the ‘monk-caregiver’ in an attempt to enhance
objectivity and to indicate that I was playing more than one role in the
events. I admit outright that my observations are only my own perspective of
the events, and because of that, my reporting is naturally biased in that it
cannot fully account for everyone’s personalized experience of the process. As
such, I have tried to keep assumptions of others’ internal workings to a
minimum and rely solely on my recollection of the externally observable
activities and behaviours. All names have been changed and some details have
been altered to protect the anonymity of all of the players. Over the years I
have worked in more than one Catholic Hospital in Toronto so the specific institution itself
will also be kept unknown. Additionally, as the events took place in the early
years of the turn of the millennium, parts of this narrative have gone through
various phases of presentation, and it has become much more robust than its
original state. Over the years, some of the essential elements have appeared in
presentations to health care providers on caring for Buddhist patients.
Compiling
and composing this narrative was heavily influenced by the bioethical
ethnography, if I may be so bold as to call it that, entitled The Spirit
Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the
Collision of Two Cultures by an American author and editor, Anne Fadiman
(Fadiman 1997). The book presents the struggle between a South East Asian
tribal family and an American medical community regarding the care of the
family’s sick child. Decision-making in health care can be messy and is often
held within the mysterious walls of hushed meetings between grief-stricken
families and medical staff who have the power of status, knowledge and
impenetrable jargon. I have spent years ‘in the trenches’ of hospital wards,
emergency rooms and intensive care units observing how these situations play
out. I have developed such concern for these naturally difficult and taboo
discussions concerning the nature of life and death, autonomy and its
dependence on competency or proxy, that I am committed to spending years to
pull apart decision-making and approach it from various angles in order to
demystify the process and ensure the equal distribution of power and resources
is left in its wake. Needless to say, a
case study such as this which focuses on the two camps caring for Lia, a female
epileptic child born in the U.S. but of Hmong descent, is exciting material
that fuels my fire. The medical and familial camps both care deeply for Lia,
the first constrained by resources and the latter being what is sometimes
referred to in bioethics as a “resource monster” (the family never paid a penny
for thousands of hours of medical care for their child), but these camps see
the world through entirely different conceptual paradigms. Drama is sure to
follow. What makes this ethnography
remarkable, however, is more than just the content. The methods used by the
author to acquire her data, and the subsequent manner of her presentation of
that data, are noteworthy and responsible in large part for the book’s success.
To be sure, the fact that the author was able to broach the inner circle of a
Hmong family that so deeply distrusted anyone affiliated with Western medicine
is an amazing feat. Because of the trust Fadiman garnered, she was allowed
unrestricted and unlimited access not only to the family but to all of the
medical records of the child. As a caregiver and someone with some religious
history with the family outside the hospital, I similarly was granted access
into the patient and family’s space and processes around the deterioration and
death of the patient. However, despite some contemplation of potentially doing
so, for this study I have not attempted to access the patient’s medical records
and rely entirely on my observations. The fact that the events took place
approximately a decade ago makes my approach to this case study reminiscent of
the style of data analysis done by the ethnographers Glick-Schiller and Fouron
in their book Georges Woke Up Laughing:
Long Distance Nationalism and the Search for Home (Glick-Schiller/Fouron
2001). The ethnography explores the Haitian experience of migration to the United States and the ways in which they maintain
their connection with their land of origin. In it, one of the two authors is
himself a Haitian and his reminiscences are triggered by listening to
interviews that were recorded on tape when the research was being done
initially, and these musings are included in the ethnography. This
incorporation of a retrospective makes the report dichronic and adds a new
depth to the subject-matter. Looking back at previous data regarding our case in
the present, and attempting to recall as much as possible at this time, having
more training in religious studies, bioethics and anthropology, has helped me
glean more about the events.
In reporting-style I would say that my
case study to follow resembles Rita Langer’s dissertation Buddhist Rituals of Death and Rebirth: Contemporary Sri Lankan Practice
and its Origins (Langer 2007).
This book was an inspiration to me because it captured an attempt to
bring together Buddhist texts and contemporary Buddhist death practices in a
South East Asian community as I wish to do similarly with my doctoral research
in India, but with a broader focus that explores the influence of religious
texts on healthcare decision making in general and not just that having to do
with death and dying. Langer’s book is
most certainly an academic one. It is
written by an academic for academics. Even though for this demographic it is a
very exciting book, my own thrill serving as a testament to that, it has
limited appeal which comes not from the topic but the presentation. Despite an
amazingly insightful threading of contemporary practices back to both early
Buddhist and pre-Buddhist scripture, and perhaps the most clear and thorough
presentation of the karmic processes of death that I have seen in Western scholarship,
it is terribly dry. Perhaps this is required of dissertations in general, but
it seems to be a downfall in terms of accessing a broader audience. Anne
Fadiman’s The Spirit Catches You and You
Fall Down: A Hmong child, Her American doctors, and the Collision of Two
Cultures (Fadiman 1997) on the other hand, is an award-winning,
widely read and highly acclaimed book. It is an emotionally hard read, but it
is impossible to put down. Fadiman approaches the description of events in
stark contrast to Langer. She poetically describes the setting and the people
involved, her narrative interspersed with background information and also
including her own feelings coming into the event and how she feels about what
she is describing. With the rich descriptive nature of Fadiman’s prose we have
not just a play-by-play of an event, but a careful setting of the scene and her
informants, including some mild judgments and brief historical references which
only enhance the narrative. It is no wonder this book has a wider appeal than
Langer’s very stiff dissertation. Having the choice between the two styles, for
readability I would choose Fadiman’s descriptive prose. However, in this case I
have chosen to follow Langer’s example and my prose when describing the events
related to a dying Buddhist patient in a Catholic hospital is in the rather
strict style of medical and nursing narratives. I have done this in an attempt
to not cloud the main details with any flowery language, and to again reinforce
objectivity by avoiding the inclusion of my personal feelings currently about
the events or those feelings which arose at the time of the events themselves.
One last disclaimer has to do with the
multidisciplinary nature of my research. Because I am straddling both the
spheres of religious studies and bioethics, the style of my presentation will
at various times shift slightly. The following section is an obvious example of
this as the narrative will read very much like a medical chart and the
subsequent analysis will read more like a bioethics paper, the structure of
which was influenced by one of my bioethics professors, Dr. Dianne Godkin,
Senior Ethicist at Trillium Health Centre and Assistant Professor in the
Faculty of Nursing and Course Director for the Joint Centre for Bioethics at
the University of Toronto. An academic paper first-and-foremost, I do have the
additional hope that this study can serve to assist HCPs in caring for
Buddhists in particular, and patients from diverse religious and cultural
backgrounds in general. It may also provide some insight for patients, families
and Substitute Decision Makers who wish to have a glimpse behind the scenes of hospital
and health care decision-making, and provide hope by demonstrating that HCPs
have many ethical tools at their disposal to strongly advocate for their
patients no matter what their unique wishes.
Case Study Applying Two Ethical Decision-Making
Frameworks: Butcher and IDEA
Dr. Robert Butcher taught courses in
Philosophy and Ethics at Western for over fifteen years, has published numerous
academic articles on ethics, has provided ethics consulting services to the
health, sport, government and business sectors through “Foundations:
Consultants on Ethics and Values” and also currently provides ethics services
to some twenty hospitals and health care facilities and acts as ethicist to the
Canadian Centre for Ethics in Sport. Applying Butcher’s “Framework for
Ethical Decision-Making (Butcher 2009)” to the case of Mrs. Pasang, a
Tibetan patient with a brain-tumour in a Toronto Catholic hospital oncology
unit who had unique Buddhist wishes for her death to facilitate her passing and
transmigration, will involve outlining the details of the case to be examined,
followed by: (1) determining the problems, (2) finding the issues
involved, (3) pinpointing the stakeholders, (4) pointing out the options
and making assessments, (5) making a decision, and (6) the implementation
of that decision (Butcher 2009). I
will stop at (4) by making suggestions for possible courses of action as the
framework is designed not only for theoretical analyses but for critical on-the-ground
decisions and the implementation of such into actual cases in health care
institutions in real-time. Butcher’s framework will be supplemented by the IDEA:
Ethical Decision-Making Framework particularly in applying the five
conditions of empowerment, publicity,
relevance, appeals and revisions, enforcement and compliance to
problem-solving. (Toronto Central Community Care Access Centre
3).
Setting
the stage and determining the problems
Mrs.
Pasang was a Tibetan-born, 55-year old female with an inoperable brain-tumour
and a prognosis of mere days to live.
Her first language was Tibetan and her English comprehension was
minimal. She was admitted to the Oncology Unit of a Toronto hospital with vertigo and headache
symptoms, and rapidly deteriorated. Her
speech underwent periods of dysphasia, and reduced motor control from
neuropathy led to an unsteady gait and reduced mobility and a general lack of
ability to perform activities of daily living. After admission, mild dementia
led to incontinence and periods of disorientation. Noteworthy, however, were frequent
but unpredictable periods of lucidity where the patient was oriented to person,
place and time and also had clear access to short and long-term memory. Despite
the onset of dementia and worsening agility, she did not suffer from agitation
nor complain of pain. The interdisciplinary team recommended she be moved to
the palliative care unit, particularly the primary physician, some key nurses,
the social worker and chaplain. Deemed incompetent to make the decision
herself, the decision to not move Mrs. Pasang was done in collaboration with
several close family members of the patient, mainly a daughter and son who
acted as the patient’s substitute decision makers (hereafter referred to as SDM
in accordance with bioethical literature such as Sibbald and Chidwick 2010).
Mrs. Pasang was a widow with the majority of her family still in Tibet and India. The daughter and son were heavily
involved in their mother’s care at home and in hospital, and although there was
still much extended family in the city, Mrs. Pasang and her children preferred
that visitation be minimal. There was a “Power of Attorney for Personal Care”
document in the chart which contained scant information regarding Mrs. Pasang’s
decisions for advance care planning, but included the non-usage of such heroics
as Cardio-pulmonary Resuscitation (CPR) in case of cardiac and respiratory
failure. In the nursing notes there was frequent mention of her strong wish to
return to India in order to be as close as possible to
her main teacher His Holiness the Dalai Lama when she died. Plans were in place
prior to Mrs. Pasang’s hospital admission for her to make this final
pilgrimage, but the dramatic change in her health status made this impossible.
She held onto the idea despite her worsening condition.
Mrs. Pasang had been a devoted Tibetan
Buddhist practitioner for the entirety of her life. She is close with one
particular teacher in the city, a monastic Lama, and since moving to Canada, made many trips back to India and regularly attended temple activities.
She also practiced at home, meditating, chanting and reading texts in front of
her shrine. Her teacher, Lama Thupten, is frequently consulted on the phone by
her children who know that although he is not a substitute decision maker, Mrs.
Pasang puts great stock in his views and advice as she has great trust and
faith in him. Additionally, a hospital
staff member who was a caregiver on the unit happened to be a Tibetan Buddhist
monk of Canadian descent, myself, was familiar with the family from the Tibetan
Buddhist community-at-large. The patient required gender-specific personal
care, but the family appreciated the unique position I was in as a Buddhist
monastic, a fellow Tibetan Buddhist of some familiarity to the patient and
family, and a hospital caregiver who had some healthcare expertise and who knew
the workings of the hospital environment. Not knowing the Tibetan language at
the time, myself as the monk-caregiver would talk with Mrs. Pasang through her
children, and also with the children directly as they were fluent in English,
about Buddhist topics and the ongoing situation with Mrs. Pasang. I would also
assist with any non-personal care activities with which the patient and family
needed assistance.
Two weeks into her stay, Mrs. Pasang
deteriorated rapidly. It was clear to all staff that she would imminently die.
While Mrs. Pasang was in a coma and started to cheyne-stoke, the term for the
deep gasping for breath that precedes death, although the family still remained
hopeful that she would pull out of it. The day she stopped breathing the family
called her teacher, Lama Thupten, to come to perform Buddhist last rites.
Myself, the monk-caregiver, was on duty and was available to facilitate
post-mortem religious requirements and activities by negotiating with medical
and nursing staff for accommodating practices that were out of the ordinary and
unfamiliar to staff. This was encouraged by the patient’s family. The religious
requirements all fell under the umbrella of non-disturbance of the cadaver, by
way of noise or physical contact. This
is to make for a smooth transition into death, and from death to rebirth. These
Tibetan Buddhists held that if the body is unnecessarily disturbed the mind of
the deceased loved-one could be reborn into a lower realm. This was explained
by myself as the monk-caregiver to the primary nurse taking care of the
patient, and she was both supportive and very interested to know as much as she
could about the Buddhist views on the processes of death and rebirth so as to
assist the patient and family maximally.
First, before vital signs became absent
but after the patient became comatose, there was the recommendation for the
patient to be moved onto a gurney that would transport the body to the morgue.
Usually this gurney is a cold, uncovered slab but accommodations were offered
to provide a stretcher with a comfortable mattress and all of the linens the
patient was already using. The logic presented was that this would prevent a
transfer of the body after vital signs became absent which would
facilitate non-disturbance of the body after vital signs ceased. The family
understood the logic but refused this course of action. As well, it was
recommended for the second patient in the shared room to be moved to another
room to allow for easy movement of staff and visitors within the room and for
reduced noise. The move was done also for the sake of the other patient and
their visitors as well, to shield them from all of the activity around a dying
patient with the assumption that the presence of death could easily upset
another patient and their family. Such a practice during palliation is common
in this hospital. Also in service of reducing the noise around the newly
deceased patient, myself as the monk-caregiver prevented another caregiver from
removing empty furniture from the other half of the room. The other caregiver
protested loudly and needed to be debriefed afterward as to the importance of
silence at this time to the Buddhist family, and the logic behind preventing
excessive noise around the cadaver.
This caregiver had difficulty accepting the explanation and the needs of
the family and felt put off by the fact that they could not act in a way that
was typical on the unit, that being freely moving furniture from one place to
another. Exasperated, they begrudgingly let go of their plan.
The next negotiation was surely one of
the most atypical and delicate. Everyone awaited the arrival of the primary
oncology physician that had been following the patient since long before their
admission. The pronouncement of death, and documentation of such, is required
after every death in hospital. In this case, the family did not want the body
of the deceased patient touched in any way. Physicans typically establish
respiratory and cardiac failure by placing their stethoscope on the patient’s
chest. The family asked myself as the monk-caregiver to intervene, and I asked
the physician if there was any way they could not touch the patient when
pronouncing their death. The reasoning behind the request from the family was
explained and the physician agreed and was very supportive of the family’s
request via myself as the monk-caregiver. The physician stood some distance
from the cadaver for a number of minutes to ensure that respiration had in fact
ceased. This process was made easier by the fact that the patient had a “Do Not
Resucitate” (DNR) order well in place. This meant that determining that
respiration had stopped was not to be followed by efforts to revive her, but
merely to establish that vital signs had ceased.
The Lama arrived with an attendant
while the physician was pronouncing and needed to be put somewhere in the
meantime. Myself as the monk-caregiver, also a familiar to the Lama, brought
the pair to a “Quiet Room” designated for visitor comfort as a quiet place
where they could comfortably relax away from the unit. It was also occasionally
used for meetings between the health care team, patients and visitors. When not
in use, staff used it to take breaks. At this particular time a nurse was in
the room alone taking her break, feet up on a table and eating. Myself as the
monk-caregiver asked the nurse to vacate the room as it was needed for a
visiting clergy that was attending to a deceased patient and their family. She
protested and refused to leave. Only after great pressure from myself as the
monk-caregiver, and intervention by the charge nurse, did she relent and leave
the room begrudgingly. At the appropriate time, now approximately hours after
vital signs first became absent, the Lama entered the room to begin last rites.
This specifically consisted of the transference of consciousness procedure,
known as phowa. The Lama was alone in the patient room with the cadaver,
curtain drawn. As with most Buddhist rituals, the procedure began with
preliminary prayers such as taking refuge in the Buddha, Dharma and Sangha and
developing a compassionate motivation. The majority of the ritual is an
internalized visualization and culminated with a very loud verbalization of a
seed-syllable PHAT! several times. As described earlier, this is the
type of phowa that is done on behalf of another and during which the
consciousness of the person is imagined to be lifted and dropped through the chakra
energy-centres until it is finally projected out of the practitioner. At the
very least, it is considered to prevent lower rebirth. At best, enlightenment
is achieved. It is thought as well that realizations can sometimes be achieved.
If the most likely candidate for the type of phowa practice from the
Tibetan Book of the Dead established in the previous chapter was in fact done, phowa
into the nirmāṇakāya, the patient’s consciousness was thought to
exit the nose and if the highest goal of buddhahood in the nirmāṇakāya (Emanation
Buddha-body) was not achieved, a higher rebirth was assured. It is possible
that the Lama tried for the patient to have a crown exit for her consciousness.
The loud chanting was heard by staff and patients alike on the unit. Myself as
the monk-caregiver tried to explain to interested staff, particularly the
primary nurse, the purpose of the ritual. Lama Thupten also left a sheet of
rice-paper with a mantra-garland printed on it on the head of the cadaver.
The next phase of post-mortem care
concerned the transfer of the body to the morgue after all ritual activity was
complete. Since the family refused to transfer the patient before vital signs
became absent, the body needed to be moved onto a gurney for transport.
Collaboration with the unit-staff and the morgue attendant allowed for special
accommodation during such a transfer. Typically a cadaver is dragged by at least
two staff, with varying degrees of gentleness, from the bed to the gurney. In
this case, six staff positioned themselves around the cadaver, with myself as
the monk-caregiver standing on the bed straddling the head of the cadaver. The
gown and mantra-paper were not removed, also atypical. Usually all devices and
clothing, anything inside or on the patients body, are removed. The staff,
instead of dragging the cadaver, together lifted the body into the air and
gently placed the body directly into the plastic shroud. The cadaver is usually
rolled from side-to-side to be placed into the shroud before the drag-transfer.
This method avoided both the side-to-side rolls and the bumping on
protruding surfaces during a drag-transfer. The gurney was then rolled to the
morgue in silence, whereas in most cases there is no injunction for
staff to maintain quiet decorum during this transfer. Lastly, collaboration
with the morgue attendant allowed for three important accommodations in the
morgue. First, they were asked to keep the cadaver in the morgue for three days
where usually a body is taken by the funeral home within 24-48 hours on
average. Next, it was requested for as much silence as possible to be kept in
the morgue during those three days. Lastly, the gurney and cadaver were placed
well away from any other gurney so as to prevent any knocking against it by
other objects. The morgue attendants gave the utmost support for all of these
special accommodations.
Problems
Before we enter into a bioethical
analysis of the case, which will require putting certain parts of the narrative
up against various bioethical principles, it is crucial to identify the main
problems that arose during these events. Most had to do with the resistance and
resentment from caregivers. Problems such as the possible negative effects of
communication barriers on decision-making, and the potential for physician
duties becoming compromised, also appear.
We begin with a look at disturbances with the caregivers involved with
Mrs. Pasang. The caregiver wishing to move furniture out of the shared room of
the deceased patient entered the room fully aware that the room had been
converted into a private room because of the death. Giving space to a dying or
deceased patient and their family is done out of a sensitivity for the most
basic and non-unique special needs of the survivors, and the many activities
that need to be done by staff in relation to the cadaver that we wish to shield
other patients and staff from observing. It is not clear to my memory if the
caregiver intended to remove the furniture to make more space in the room or to
use the furniture for another patient, or to make for symmetry in another
shared room. I seem to recall that the impulse was not for the benefit of the
patient or family. In this case, entering the room at all, without the direct
need to be of service to the patient or family, was a breach of privacy. The
importance of privacy is the logic behind the door-knock that HCPs are
encouraged in their training to do before entering a patient room. This small
but important gesture has devolved to the point of being a token behaviour.
Hospital staff rarely wait for a response to have permission for entrance
granted or denied by the occupant and typically knock and enter simultaneously.
A fly-by knock, if you will. They also often feel that, as a staff-member, they
need only the slightest excuse to enter a patient room. The main point is that
this particular behaviour, entering the room of a deceased patient and their
family without permission, with or without a good reason, is overstepping a
privacy boundary. This, too, even before we consider the expressed need
of this Buddhist patient for silence in the room. When told by one of the
patient’s primary caregivers to refrain from moving the furniture, the raised
voice of protest is again a breach of the most basic rules of privacy and the
etiquette of maintaining a professional demeanor around the ill and visitors. There
is also a particular emphasis on volume control in palliative environments. Again,
this is before considering the special case of an expressed religious
wish to maintain silence around the cadaver.
The caregiver who initially refused to
leave the quiet room designated for visiting family usage was not necessarily
reacting to the religious nature of the visit by clergy. The nurse simply
wanted to not move from her comfortable break-spot. The request could have come
from the need to accommodate any visitors. Again, this is an overarching
disregard for patients and family and not necessarily a direct offence to
religious requests and accommodating visiting clergy.
Of additional interest is the view of
another nurse which arose around the same time, during a different case but
also involving a dying Tibetan Buddhist patient on another unit. It is relevant
here since the nurse’s statements were directly in reaction to certain
accommodations that were special requests for Buddhist end-of-life care shared
by both cases, Mrs. Pasang and this other Tibetan Buddhist. Namely, practices
such as transferring the patient to the gurney that would go to the morgue
(fully dressed for comfort) before vital signs become absent; minimizing
transfers or, if required, performing gentle and silent transfers; and maintaining
a non-disturbance of the body physically or by way of noise for three days. The
nurse had asked to know some of the special accommodations for dying Buddhists
and when the nurse was informed of the above requests, and the internal logic
behind them, she said sarcastically “why don’t we just throw them up in the air
and spin them three times?” This is a clear indication of a HCP regarding such
religious death practices as wasted effort without actual results. The
non-measurable and presumed results from the emic perspective of a religious
adherent does not impress this HCP. However, would the fulfilment of a
patient’s wishes, and the satisfaction of the family knowing that their loved
one’s wishes were followed, be enough for the HCP to have a vested interest in
unique death practices in hospital?
It is difficult to say what caused such
resistance and resentment from these HCPs. There are some indications that the
key caregivers in our narrative who resisted accommodating the patient’s needs
did so not because of the religious nature of the requests but because they
were being asked to do something that disrupted routine. For whatever reason,
the caregiver wanting to move furniture thought it was an important enough
activity to disturb the typically esteemed palliative privacy of a room where a
patient was dying. Furniture movement
usually has to do with the discharge, admission or internal transfer of
patients, and being prevented from this routine could have been enough to cause
her outburst. The caregiver unwilling to relinquish her comfort in the quiet
room designated for family visits and meetings also could just have been cranky
when forced to move from a spot that is rarely used for its true purpose. Habits
die hard.
On the other hand, we could blame such disturbances
on a mere lack of familiarity with diverse religious and cultural behaviours.
But, is this fair to suggest? Surely caregivers who have any degree of
experience have seen patients belonging to the Christian majority engaging in
silence/prayer at the bedside and the visit of their respective clergy.
In-house multifaith chaplains also are commonplace. With this in mind, the
Tibetan Buddhist religious context that required silence and the presence of a
ritual expert is really not much different. There is another possibility, and
that is a resistance and resentment stemming from intolerance of another
religious tradition. Although the staff and patient demographics in Catholic
hospitals are both diverse, the admission of patients and hiring of staff unaffected
by a person not being a Catholic, the three caregivers mentioned were all
Catholics themselves. The caregiver who entered the room to move furniture had
been exposed to Mrs. Pasang and her family for some time before her death and
could well have known that she was a Tibetan Buddhist. The caregiver in the
quiet room was asked to leave because of a visiting Lama and might have been
influenced by this knowledge. Lastly, it was clear that the conversation with
the nurse who equated certain Buddhist death performances with random activity
was a dialogue having to do with the unique death practices of a Tibetan
Buddhist on the unit at that time. Her reaction was very possibly from the
incompatibility of her religious beliefs with those of a patient adhering to a
different faith.
Another problem concerned decisions
that involved the SDMs. Attempts to communicate directly with the patient were
difficult as there was indeed a language barrier. Some of the decisions
required were fielded by the patient’s children without consulting the patient
directly and in her native Tibetan tongue, especially as she deteriorated. At
times when the patient was still capable, is it acceptable to say that the
children, clearly determined as her SDMs, would know exactly what the
patient would decide for herself under every circumstance? At times when the
patient lacked capacity, either temporarily or permanently after her loss of
consciousness, some questions were met with answers that seemed to be knee-jerk
reactions because they were given with haste and without much deliberation
amongst themselves and the caregivers. For example, the suggestion by myself,
the monk-caregiver, to transfer the patient to the gurney before vital
signs became absent to prevent disturbing the body post-mortem seemed to be in
accordance with the patient’s wishes but was quickly rejected by the family. It
is understandable, of course, since the idea of putting one’s mother on the
gurney that comes from (and is going to) the morgue might be a distasteful
one. Even if the gurney, which is a bare
metal stretcher, is dressed with a mattress and linens, it is still a stretcher
and not a bed. Few would choose to have their loved-ones die on anything but
the most comfortable bed. However sensitive one must be at the end of life, the
question still remains: was this decision in accordance with the patient’s
wishes to do all that could be done to aid in her transmigration or was it
entirely from the family’s preference?
One last problem in this scenario could
be located with the physician pronouncing death without the typical physical
assessment of the patient. In the interest of fulfilling the religious wish to
not touch the body after vital signs become absent, can it be said that the
physician was neglectful? By relying on the primary caregivers’ observations
and opinion that a physical assessment was not required to determine the
absence of cardio-pulmonary vital signs, forsaking the usage of a stethoscope
or even pulse-taking by hand, was there the risk that the patient actually
still had vital signs?
Issues
Formulating an ethical context requires
teasing out the ethical issues, principles and relevant hospital policies or
goals at play with the problems of (1) caregiver interference with unique religious
wishes for the end of life; (2) decision-making involving SDMs when there is a
language barrier or lack of capacity; and (3) pronouncement of death without a
physical assessment. Autonomy, beneficience, non-maleficence, dignity,
solidarity, utility, conflicts of interest, integrity, diversity, transparency,
inclusiveness, patient-centred
or family-centred care are all
weighing in with this situation. Mrs.
Pasang’s beliefs and autonomous wishes with regard to spiritual care were
clearly known despite being out of the ordinary and her lacking in capacity at
times. The requirements for silence and the phowa ritual to assist with
transmigration from one life to another were not being respected. The diversity
demonstrated by the unique worldview being held by a Tibetan Buddhist,
particularly one that embraces reincarnation, is trampled by both of our
implicated caregivers. It could be that their actions are not motivated by a
disrespect for a non-Christian religion and were just disconcerted by the interruption
of routine, but it is also possible that religion is the main trigger. There
can be a major conflict of interest for healthcare providers who are caught
between injunctions to care for patients on their own terms and the missionary
push in Catholicism. Their integrity is in jeopardy since a strong missionary
drive might override giving priority to other ethical considerations, and allow
violations of certain ethical requirements to pass unnoticed. In fact, it is
possible for ethical injunctions within the very same Catholic Health Ethics
framework to be in competition. If the patient’s wishes are being ignored based
on a Catholic missionary compulsion, she is being harmed by those who are
actively going against her wishes, and she is unprotected from harm (a
requirement of beneficence) by those who passively observe such treatment and
do not interfere. What led the two key caregivers to resist and resent the
patient’s needs is somewhat opaque. Without an advocate straddling both spheres
of nursing and religious, would someone else have done something to interfere
with their actions? They would be compelled only if they had all of the pieces
of this ethical puzzle: her wishes known from her history and her children’s
communications, her history which includes her religious orientation, the
presence of formerly expressed wishes and the support of her advocates
(children, clergy and monk-caregiver) when she was incapable.
Institutionally,
this hospital’s operation is guided by the Catholic Health Association of
Canada’s Catholic Health Ethics Guide. The tension between patient
autonomy and missionary zeal can be seen within even a couple of pages of the
document. In Section I, The Communal Nature of Care, we see the
following articles under Health and Healing (italics added):
2.
…determinants of health include biological and psychological (mental and
emotional) factors, the physical environment, lifestyle, spirituality and
religious belief, social interactions and support, economic status, and
working conditions. Together, these
factors influence the health of an individual or community.
3.
Healing is more than simply curing a disease.
Healing takes into account the wholeness of the person, recognizing the
interrelationship of body, mind and spirit.
It involves a restoration of balance and acknowledges the role
spirituality and/or religious beliefs can play in the healing process. A particularly important way to nurture
health is to foster prayer, forgiveness and reconciliation. (Catholic Health Association
of Canada
20)
The opening section of the document
places great importance on an individual’s spirituality, and places it as a
crucial component in promoting and restoring health. Even though palliation is
a move from cure to comfort, we can easily include end-of-life care within the
spectrum of healthcare. In the same section, we see the following article under
Mission of Catholic Health and Social Service
Organizations:
7.
Every Catholic health and social service organization proclaims a religious
identity that reflects a vision of life and of the world that is in accord with
human values and is faithful to the Roman Catholic tradition. The organization’s mission should be
articulated clearly in a mission statement.
Such statements should be reviewed regularly, with opportunities for
input from all members of the organization.
A regular audit to ensure compliance with the mission is necessary.(Catholic Health Association of Canada 2000:
21)
Here we may become concerned that
‘spirituality’ has now become too narrow. It is important to again note that
the staff demographic in Toronto Catholic hospitals is as diverse as the
patient populations. However, what about the HCP working at such an institution
who also happens to be Catholic, such as the caregivers in the narrative about
Mrs. Pasang? Their ‘vision of life’ may
be something kept in check within their mind and amidst fellow Catholics, but
in this ‘vision of the world’ is there a compulsion to save lapsed Catholics
from themselves by returning them to the faith, to introduce those who are
ignorant of the Catholic Church and their saviour, and to ignore those that are
non-believers who they feel might be beyond saving? This is one of the
main concerns of this study: can HCPs fully meet the unique religious
end-of-life needs of the patient who holds a worldview different from their
own? In general, it may not even become evident that the HCP and patient hold
to different worldviews. But what if the requests made by a patient are
entirely and explicitly based on the internal logic of a worldview
different from the HCP? What if the HCP does not at all accept the reality of
the patient’s worldview, such as Mrs. Pasang holding to the idea that after
death she will reincarnate and that what happens at the end of her life will
influence that process? Even further, what if the HCP holds the idea that the
unique religious needs of the patient will actually be harmful to the
patient spiritually? They may think that non-Christian rituals lead to a
disconnection from the divine and result in torment after death. What
principles ultimately compel the HCP to act?
Again
from Section I, The Communal Nature of Care, under Primary
Purpose:
8.
Whatever its particular objectives, every Catholic health and social
service organization aims primarily at the relief of suffering and the
promotion of health… (Catholic Health Association of Canada 21)
The guide, here, allows for various
agendas but brings the objective of Catholic health care back to reducing
suffering and increasing health, for which spirituality is recognized as a
crucial component. Not just any spirituality, mind you, but that which is in
accordance with the individual. Bioethicist Norman Daniels, who has spent much
time elaborating on political philosopher John Rawls’s principles of justice to
establish health as a special need, states in Health-care Needs and
Distributive Justice that “[s]ome might say health care in a direct and
simple way reduces pain and suffering (Daniels 1981: 169).” If reducing
suffering is the end-goal of healthcare, what prevents the HCP from justifying
their disregard of the patient’s unique religious needs by considering them as
a cause of increased suffering? The caregivers in our narrative might
very well think that Tibetan Buddhist activities at death, such as the phowa
ritual, will be spiritually damaging at death-time and after death. In Section
V of the Catholic Health Ethics Guide, Care of the Dying Person, the following
relevant articles with regard to Decision-making and the Dying Person appear:
89. In making decisions about the treatment of
the dying person, the needs, values and wishes of the person receiving care should
be the primary consideration. Treatment
decisions should reflect an agreement among all those involved in the care of
the person, including family members and those who are significant in the
person’s life.
91. When a person is not competent, that is,
lacks adequate decision-making capacity with respect to treatment, every effort
is to be made to ensure that the choice of health care treatment is consistent
with the person’s known wishes.
Health care treatment choices are to be made by a proxy who, if the
person’s directives are not known or are inapplicable, must make treatment
decisions based upon the dying person’s known needs, values and wishes.
92. …decisions should take into account the
person’s past and present expressed wishes… (Catholic Health Association of
Canada
56-57)
Although the organization is meant to
hold to a Roman Catholic vision, the guide ensures that this vision is not
to impinge on the primacy that is given to a person’s uniqueness as
expressed through their particular needs, specific values and individual
spirituality which will all influence a person’s wishes with regard to their
care. Therefore, those who interfere with Mrs. Pasang’s Tibetan Buddhist death
practices are not only acting out of accordance with fundamental ethical
principles such as autonomy, non-maleficence, dignity, diversity and so on,
they are also acting out of accordance with the institution’s internal
policies.
Our case study’s second problem
concerns decision making in conjunction with SDMs when the patient has a
language barrier, and substitute decision making when there is changing
capacity and lost capacity. In Mrs. Pasang’s case there were times when she was
fully capable but had a language barrier; times when she had changing capacity
when dementia was sometimes present and sometimes not; and a time when she
became totally incapable when she was comatose. The Substitute Decisions Act
defines incapacity for personal care in this way:
45. A person is incapable of personal care if the
person is not able to understand information that is relevant to making a
decision concerning his or her own health care, nutrition, shelter, clothing,
hygiene or safety, or is not able to appreciate the reasonably foreseeable
consequences of a decision or lack of decision.
(Substitute Decisions Act, 1992 c. 30, s. 45; 1996, c. 2,
s. 29)
Even though we might say that with a
language barrier the patient would meet the above definition of incapacity, in
fact this is incorrect. If the patient were free from any disorientation or
dementia and was presented with relevant information in her native tongue, she
would have been able to process it in a satisfactory manner and make a
reasonable decision. Comprehension of a language other than a patient’s primary
language must not be a factor in determining capacity. All too often,
however, HCPs do not exert enough effort to ensure that a patient can properly
receive crucial information about their health, and do not do everything
possible for patients to understand information presented to them. For patients
without friends or family that can translate and advocate for them, there might
be time constraints (real or imagined) or obstacles to accessing interpreters.
In my experience in hospitals it is often not easy to get an interpreter even
though such services exist within institutions and with outside agencies.
Countless times I have heard someone on the overhead PA system asking for
anyone speaking a particular dialect to go to a particular ward and room to
help interpret for patients and their families. Over time interpreter access
has improved, with such things as an easily locatable language interpretation
hotline on many units. When there are insurmountable language barriers,
important interventions are either delayed or treatments proceed or cease
without obtaining proper consent. Aside from crucial decision-making, in everyday
caregiving practice language barriers can likely lead to caregiver neglect or
extreme frustration on the part of patients who do not understand what is
happening to them when someone is suddenly turning them and changing their
diaper. With Mrs. Pasang, her children were at the bedside constantly and were
able to translate for their mother. There were times, though, when
conversations with HCPs were with the children and did not include Mrs. Pasang.
Constantly determining a patient’s capacity is time-consuming, but absolutely
crucial. Capacity is changeable: “[c]apacity can change over time…[where] a
person may be temporarily incapable because of delirium but subsequently
recover his or her capacity.” (Etchells et al. 18) If there were times when Mrs. Pasang
had capacity and was not included in these conversations by way of translation,
her autonomy was compromised. It is possible too for decision-making to have
been a collusion between the HCPs and the children, in accord with their own
values and wishes. The children are only SDMs when their mother lacks
capacity, and not at any other time. Even when Mrs. Pasang lacked
capacity, if the children made decisions without thorough deliberation as to
which direction to take that would be most in accord with their mother’s values
and wishes, her autonomy has been breached and there is a conflict of interest.
This is not a unique phenomenon. Bioethical literature shows that patient
values and wishes are often overlooked. According to the data, such as that found
by in their paper “Best interests at end of life: A review of decisions made by
the Consent and Capacity Board of Ontario,” SDMs tend to emphasize their own
values, HCPs focus on the clinical part of treatment and don’t spend a lot of
time on discovering patient values (Sibbald and Chidwick, 2010).
Regarding
our third and final problem, the pronouncement of death without a physical
assessment, we might consider this a conflict of physician duties. Pronouncing
death without touching the cadaver with a stethoscope was done in service of
respecting the patient’s wishes for her body not to be disturbed post-mortem,
based on her religious values concerning reincarnation. In “The Practice Guide:
Medical Professionalism and College Policies” by The College of Physicians
and Surgeons of Ontario, it states that “A physician must always act in the
patient’s best interests. A physician’s interests should not be in conflict with
the patient’s.” (CPSO 12) However, the Hippocratic duty of non-maleficence
requires a physician to not harm a patient. Is following the patient’s wishes
here potentially harmful? If Mrs. Pasang still actually had vital signs that
were not observable without a physical assessment, the stoppage of
certain treatments as a result of death determination would not be in her best
interests. At death, hydration and pain medication are withdrawn, turning also
ceases and so on. If Mrs. Pasang were still alive, she could well be in pain.
I
could not find anything among the literature belonging to The College of
Physicians and Surgeons of Ontario that specifically covers policies on death
pronouncement. Most legislation regarding death pronouncement is actually
related to death certification. The Public Hospitals Act contains this
regulation for a Report of Death:
17.
(1) When a patient dies in a hospital, the attending physician or registered
nurse in the extended class shall cause a copy of the medical certificate of
death required under the Vital Statistics Act to be filed in the medical
record pertaining to the patient. (PHA 1990 O. Reg. 216/11,
s. 6.)
Regarding The Expected Death in The
Home (EDITH) Protocol, the Hospice Palliative Care Teams for Central LHIN published the “Expected Death in the
Home Guidelines for Implementation” which states that “[t]here is no legal
definition of who is able to pronounce death. Nurses may pronounce death when
death is expected. Currently, in Ontario only physicians and Nurse
Practitioners are able to determine the cause of death and sign the medical
Certificate of Death (HPCT for Central LHIN 3).” There is nothing indicating how
death is to be pronounced, only by whom, according to provincial
law. EDITH also has much to say about death certification as opposed to death
pronouncement. From the above it is clear that a distinction is made between
expected and unexpected death. The same distinction is made in another
document, one in which I was able to find a death pronouncement policy. The
“Resource Manual” of The College of Physicians and Surgeons of British Columbia
states the following:
The pronouncement of death is not a
reserved medical act or a delegated medical function. There are no laws
governing the event when death is expected nor are there laws defining who is
qualified to pronounce death in such circumstances. An unexpected death must be
reported to the coroner, pursuant to Section 2(1) of the Coroners
Act.
The completion of a Medical Certificate
of Death is the legal responsibility only of a physician or a coroner.
Pronouncement of death is undertaken in
practice and by custom to formalize the occurrence of death, and is done to
reassure relatives and the public that a patient is, indeed, deceased before
being treated as such. The actual pronouncement can be reassuring to the family
and can contribute to the dignity of the end of a person’s life. The skills to
pronounce death are not exclusive to physicians. Other regulated health
professionals may also possess the requisite skills.
Physicians are advised to ensure that
long‐term
care facilities, palliative care units and hospices with which they are
associated develop policy and procedures with respect to pronouncement of death
when death has been expected. (CPSBC 2009)
Death certification is strictly
regulated in both provinces. However, both EDITH and the CPSBC documents, each from
different provinces, confirm that there is no national legislation
regulating pronouncement of an expected death. Mrs. Pasang’s death was of this
type and she had a DNR order in place. Even though the CPSBC
views death pronouncement in the case of an
expected death as a skill not reserved for any particular HCP, it holds it to
be an important custom for the benefit of survivors and in need of internal
institutional guidance. There is no indication in national or provincial law
that death pronouncement is to be done in any particular manner. Determining
death by trusting the observations of non-medical HCPs such as nursing staff
and myself as a monk-caregiver (an unregulated health care aide or nursing
assistant), and the physician’s own visual and auditory observations, appears
to be technically appropriate. The physician had followed both the wishes of
the patient and death pronouncement regulations because the death was expected.
With regard to the patient potentially experiencing pain if they maintained
very weak vital signs, during active dying certain treatments and interventions
that would be withdrawn at the time of death had already been withdrawn
earlier because the death was expected and would no longer be of benefit. In
fact, continuing certain interventions during active dying unnecessarily, such
as the turning of the patient from side to side for comfort and skin integrity,
could likely hinder the process of dying or hasten it.
Stakeholders
The
stakeholders in this scenario are the patient Mrs. Pasang, those connected to
her such as her children and teacher, myself as the monk-caregiver, her
healthcare team and the hospital. All
have the patient’s best interests at heart, but what becomes tricky is how
‘best interests’ is defined by the Catholic healthcare providers who might have
the perspective that Tibetan Buddhist religious activities are harmful to the
patient spiritually. They may, with
their Roman Catholic vision of the world, see the act of interfering with her
religious activities as in her ‘best interests’ by somehow reducing the chances
of her separation from the divine and certain doom after death. However, the
Canadian Health Care Consent Act clearly states that, with regard to a proxy
deciding for the incapable person,
[i]n
deciding what the recipient’s best interests are, the person shall take into
consideration the values and beliefs that the person knows that the
recipient held when capable and believes he or she would still act on if
capable… HCCA 1996: c.2, Sched. A, s. 59 (1)
Despite the fact that the only
legitimate proxy decision-makers in this case are the patient’s children and
are only meant to act as SDMs when the patient lacks capacity, in principle
this excerpt holds relevance for each stakeholder, and for each of the three
problems that we have identified. Caregivers holding to the Catholic vision
could very well justify their interference with the patient’s unique religious
wishes by pointing to her changing mental status as an indication that the
patient does not know what she wants. How could she if she is not even
oriented to person, place and time? This logic is faulty given the very strong
documented history and SDM and clergy advocacy in relation to her religious
practice. The unreliability of her mental status, which was at times changing
momentarily, does not weaken a precedent in care but rather places greater reliance
on previously known values and beliefs and best interests. Religious grounds
for supporting best interests are remarkably common, as the literature proves:
“As SDMs advocate for their interpretation of the patient's best interests, 2
clear themes arose from the 12 cases. First…religious values was frequently
argued (8/12 cases) (Sibbald and Chidwick 2010: 171.e4).” The Catholic
missionary members of the team could also be relying on the fact that “Powers
of Attorney for Personal Care” and other forms of advance directives and living
wills ‘speak’ to the substitute decision maker, NOT to the health practitioner (Wahl
2003: 11)” and are not legally binding. They might ask: if advance directives
are not designed to compel the HCP to act, and if they do not even legally
compel SDMs either, why bother following them? Again, this is not going to hold
up as a way to ignore the patient’s history of practicing, and previous wishes
to have continued involvement with, Tibetan Buddhism since the health
practitioners must rely on SDMs when the patient is incapable, and both SDMs
advocate for the patient’s unique religious wishes. Additionally, even though both clergy members
are not SDMs, and despite one clergy having a dual role that includes being on
the healthcare team as well, both are vested in helping fulfil Mrs. Pasang’s
Buddhist spiritual needs.
As for the other problem of SDM
boundaries, the stakeholders are the patient, SDMs, HCPs and myself as the
monk-caregiver. When the decision to move the patient to the morgue gurney
before death had to be made, I had the vested interest of following the
patient’s wish to not be disturbed after death and encouraged the pre-emptive
transfer. The SDMs refused hastily which could have been from their discomfort
with the idea of their mother moving to a stretcher before death. Even though
their mother’s wishes were known, and given that pain management requirements during
active death when there is a loss of consciousness is reduced, they did not
assent likely because of their own feelings interfering with the
decision-making process. Sibbald and Chidwick observe that
excellent
communication is key to addressing [end-of-life] EoL cases where best interests
may be in question... It is important that SDMs have a clear understanding of their
role as SDMs... It is often the case that SDMs believe that the decision before
them is theirs to make according to their own values and beliefs, and as a
result, SDMs are commonly burdened with the idea that they “will end
up killing their ‘loved one’ if they refuse treatment.” This kind
of misunderstanding about their role typically supports fears and guilt that
may not be necessary. (Sibbald and Chidwick 2010: 171.e5)
Anticipating the burden of guilt that
they could feel if they did not ensure maximal comfort for their mother at
death by keeping her on her death bed, the SDMs might have been swayed
by their own feelings to override the patient’s directive. Although they
decided on her behalf to not do the transfer, the SDMs might have still felt
guilt at not following the mother’s injunctions to the fullest extent. In our
case, at the three times referred to earlier (patient capable but having
language barriers, changing mental status and complete loss of capability), the
SDMs may have taken their role to mean making decisions based on their own
logic and feelings when actually they are either to confer with the patient in
her native tongue to determine her wishes, or simply act as proxy to the
incapable patient.
Our final problem of pronouncing death
without a physical assessment concerns all stakeholders, including the hospital
itself. In fact, the Ontario College of Physicians and Surgeons could be
included among the stakeholders. In following the patient’s wishes to not touch
the body when vital signs appear to be absent, and the encouragement on her
behalf by the SDMs and myself as the monk-caregiver to follow this directive,
the physician could be at odds with federal and provincial legislation, their
college and the hospital. As we have found, though, because the death was
expected there is no strict application of death pronouncement at any regulatory
level and the practice is performed customarily to provide a sense of closure
for the loved-ones of the deceased.
Options and Assessments
In this next section, I will attempt to
answer some of the questions that arose from the problems presented earlier
(HCP interference, patient and SDM communication and pronouncing death without
physical assessment) and suggest possible best courses of action. Many ethical
principles are being tested in the case of Mrs. Pasang, particularly: autonomy,
beneficence, non-maleficence, disclosure, integrity, dignity, diversity,
conflict of interest, inclusiveness, the competing (in this case) principles of
patient- vs. family-centered care, utility and transparency. For each of our
three key problems, the relevant ethical issues will be demonstrated and our
solutions based on minimizing conflict with ethical principles by implementing relevant
conditions from the five suggested in the IDEA ethical framework: empowerment, publicity, relevance, appeals and
revisions and enforcement (compliance) (Trillium 2008).
1)
HCP interference with
patient’s unique religious wishes
We have discussed the possibility that
the HCPs interference with Mrs. Pasang’s wishes for non-disturbance of her
body, and the performance of the phowa ritual, post-mortem could have
come from a mere resistance to alter long-established routine, from
unfamiliarity with a religion that is not mainstream or from distaste for
Buddhism from an extreme pursuit of the Catholic vision. It could also have
been a combination of all three. Should the fulfilment of a patient’s wishes be
enough for the HCP to have a vested interest in unique religious death
practices in hospital and compel them to act? All three possible causes of the
interference threaten the ethical principles of respect for autonomy, which
is to respect “people's right to self-determination or self-governance such
that their views, decisions and actions are based on their personal values and
beliefs;” beneficience, which is to “contribute to the welfare of
others, which may include preventing harm, removing harm, promoting well-being,
or maximizing good;” “non-maleficence which is to do no harm” by
avoiding “causing harm to individuals or groups, or risking harms of
significant magnitude and probability;” and “respecting the dignity of
morally valuable beings” which is “to treat beings in a way that honors their
value or worth based on morally significant qualities, e.g., sentience,
relationality, rationality…(Trillium 2008: 11).” The fact that a breaching of these
principles occurred is fairly self-evident, but by being out of step with the
family and other HCPs who are working
to fulfil the patient’s wishes, there is also an affront to the ethical
principles of solidarity which “[r]equires consideration of the extended
community and acting in such a way that reflects concern for the well-being of
others,” and to utility which is “[m]aximizing the greatest possible
good for the greatest possible number of individuals…(Trillium 2008: 12)” Regardless of the cause, any
interference with Mrs. Pasang’s unique religious wishes for death care is an ethical
violation, defined as “an action that appears to be unethical…being proposed or
carried out (Trillium 2008: 10).”
If either a concern for the disruption to routine or a
distaste for Buddhism are the cause of interference, other ethical principles
are at risk. Avoiding conflicts of interest requires one to “disclose
conflicts of interest and avoid disqualifying conflicts of interest.” Here, one
must “disclose both real and perceived conflicts between one’s self-interest
and/or one’s obligations to one or more individuals or groups (Trilliam 2008:
11).” Additionally, integrity requires the HCPs to “give priority to
ethical considerations even when there is a strong drive for self-interest or
other desires, or where violating ethical requirements could pass unnoticed (TCCCAC
2008: 11).” Holding to routine and their own faith as definitive breaches these
principles by placing the HCP’s self-interest over that of the patient, family
and supportive HCPs. When it comes to the Catholic vision when caring for
non-Christians, and in this case a patient from a non-theistic Eastern
religious tradition, it is possible the HCPs experienced ethical (or moral)
distress which occurs “when you find yourself in a situation of discomfort,
if you have failed to live up to your own ethical expectations, or if you are
unable to carry out what you believe is the right course of action due to
organizational or other constraints (TCCCAC 2008: 10).” The missionary force of
the Catholic vision could cause an ethical dilemma which occurs “when
there are competing courses of action both of which may be ethically defensible
(e.g., conflicting values) and there is a difference of opinion as to how to
proceed (TCCCAC 2008: 10).” Supporting the religious wishes and practice of a
non-Christian patient could set an HCP’s values as a caregiver up against those
that they hold as a Catholic.
If lack of familiarity with diverse
religious and cultural behaviours has caused the interference with Mrs.
Pasang’s wishes, there has been harm to the ethical principle of respect for diversity
which is to “accommodate, protect or support differences, including religious,
cultural, political and other differences, among people and groups…(TCCCAC
2008: 11).” Lacking familiarity with diversity is therefore no excuse to
interfere with unique religious needs at death, especially given that such
things as silence or prayer and ritual at the bedside is commonplace in other
more mainstream religious traditions, including Christianity. Silence at the
bedside is even practiced by secularists out of respect for the deceased and
the bereaved.
To solve the problem of interference
with a patients unique religious wishes we can appeal to the IDEA ethical framework.
The events in our narrative such as the HCP making noise in the room of the
deceased and the other HCP who refused to leave the room designated for
visitors when needed by a visiting ritual expert, can be assessed by using relevant
conditions from among the five found in the IDEA model. Earlier we found that the Catholic Health
Ethics Guide gives primacy to patient wishes and values over the Catholic vision. Again, in article 8: “Whatever
its particular objectives, every Catholic health and social service
organization aims primarily at the relief of suffering and the promotion of
health… (Catholic Health Association of Canada 2000: 21)”; and article 89: “…the needs, values and wishes of
the person receiving care should be the primary consideration (Catholic Health
Association of Canada 2000: 56).” As such, the HCPs’ ethical dilemma can be subject
to the condition of relevance where “decisions should be made on the
basis of reasons (i.e., evidence, principles, arguments) that “fair-minded”
people can agree are relevant under the circumstances (Daniels & Sabin 2002).”
To ensure the upholding of the ethical principles such as patient autonomy and
dignity mentioned above, the relevant reason for non-interference with unique
religious wishes is the primacy of the patient over staff needs (real or
imagined) and their own beliefs. In our
case both HCPs were abusing their privileges as hospital staff. Entering a room
without permission for whatever reason is blatant disregard for privacy, and
commandeering a room reserved for the benefit of visitors is an inappropriate
use of hospital spatial resources. With the condition of empowerment, “there should be efforts
to minimize power differences in the decision-making context and to optimize
effective opportunities for participation (Gibson et al. 2005).” By this, the
power with which hospital staff feel they are automatically bestowed to enter
and use hospital rooms is overridden by patient needs such as privacy
and visitation. Another condition, compliance
(enforcement) where “[t]here
should be either voluntary or public regulation of [a] process to ensure that the…[relevant] conditions are met (Daniels & Sabin, 2002),” gives
us the means to support the previous conditions of relevance and empowerment.
There are many logistical possibilities to practically address the specific
difficulty in maintaining patient privacy and the privileges of visitor access:
signs on patient-room doors that state that permission is required to enter; policies
that prevent HCPs who are not directly caring for a patient from entering
patient-rooms; and restricted usage by staff of rooms designated for visitors
by implementing key-restriction or timing policies, to name but a few. As for
the primacy of patient values and wishes over those of HCPs, education in both
legislation and institutionally-specific policies, such as that captured in the
Substitute Decisions Act and the Catholic Health Ethics Guide respectively,
should be required of HCPs.
The William
Osler Health System provides an excellent example of providing such education to
their staff. As an invited Buddhist representative and speaker I have spent a
great deal of time at their two sites, Brampton Civic Hospital and Etobicoke
General Hospital, institutions that both have very diverse patient and staff
demographics. Their Spiritual Care and Diversity Services departments regularly
host conferences on diversity, have speakers from various cultural and
religious groups deliver talks on various healthcare topics, and have an annual
Diversity Day where representatives from community groups and services come to
spend the day hosting a booth and interacting with staff, visitors and patients
as well. They are a beacon among hospitals and I am constantly impressed by
their efforts to promote diverse care-delivery to their clients. The Director
of Diversity Services, Gurwinder K. Gill, has written the following “Recommended
commitments to diverse care-delivery: Values and Attitudes”:
I avoid imposing values that may conflict or be
inconsistent with those of cultures or ethnic groups other than my own. Even
though my professional or moral viewpoints may differ, I accept the individual
and family as the ultimate decision makers for services and supports impacting
their lives. I recognize the meaning or value of medical treatment, health
education and bereavement counseling may vary greatly among cultures. I accept
that religion and other beliefs may influence how families respond to illness,
disease and death. I understand that grief and bereavement are influenced by
culture. I seek information from family members or other key community
informants that will assist in service adaptation to respond to the needs and
preferences of culturally, ethnically and linguistically diverse individuals
and families served by my program or agency. I avail myself to professional
development and training to enhance my knowledge and skills in the provision of
services and supports to culturally, ethnically and linguistically diverse
individuals and families.
(Gill 2011: 5-6)
These commitments, in my opinion,
should be required of every HCP and embedded in training and education.
2) Patient and SDM communication difficulties
Since directly communicating with the
patient in English was impossible, translation was required to surmount Mrs.
Pasang’s language barrier. However, some conversations regarding the patient’s
situation were entirely between the HCPs and the patient’s children, in Mrs.
Pasang’s presence but without consulting the patient directly in her native
Tibetan tongue. Should they be compelled to translate everything in both
directions, from HCPs to patient and patient back to HCPs? The patient’s mental
status changed frequently as she moved closer to death. Typically in this
hospital, a patient’s orientation is measured at the beginning of a shift.
Should the patient’s orientation have been monitored more frequently? Orientation
is not the only component of capacity assessment. Was a full capacity test ever
performed? If yes, was it performed regularly, or at least during critical
decision making? Is it acceptable to say that the children, clearly determined
as her SDMs but only at times when the patient lacked capacity, would
know exactly what the patient would decide for herself under every
circumstance? At times when the patient lacked capacity, either temporarily or
permanently after her loss of consciousness, some questions were met with hasty
answers without much deliberation amongst the SDMs and the caregivers. Should
the SDMs be compelled to deliberate thoroughly, based on the patients
previously expressed wishes?
We could answer positively for each of
the above questions. In decision-making with Mrs. Pasang, translation,
efficient determination of mental capacity and thorough deliberation based on
prior expressed wishes all are in service of the ethical principle of respect
for autonomy. Mrs. Pasang’s participation is necessary. Involving
her maximally also ensures the respect for her dignity, particularly given that
‘rationality’ is a crucial part of the definition of this ethical principle (Trillium
2008: 11). With intact mental capacity, her ability to make rational choices
must be the centre of the decision-making processes having to do with her care.
Including the patient in every way possible also upholds the ethical principle
of transparency in decision-making where communication makes decisions
and their rationales accessible to all stakeholders. (Trillium 2008: 12).
On the other hand, in dealing with
this native Tibetan and her family, it is important to be sensitive to possible
family dynamics which are culturally specific that might influence decision-making.
Considering this possibility is supportive of the ethical principle of respect
for diversity.
Chan’s study, Informed Consent Hong
Kong Style: An Instance of Moderate Familism (Chan 2004), might
prove helpful in recognizing any cultural influences on their decision making
processes even though Mrs. Pasang and her family are South East Asian and not East
Asian per se. The integrity of the team could be at stake as they could be
motivated to act against autonomy by placating the children who could very well
be seen as more able decision-makers because of their command of the English
language and having spent most of their lives in Canada. The children are also more likely to
make noise if the team resists any of their ideas to follow courses of action
that are unfamiliar and seemingly counter-intuitive, such as pronouncing death
without physical assessment. However, by involving the family to such a high
degree we could say that the healthcare team is engaged in the ethical
principle of inclusiveness,
defined as “[i]nvolvement/representation of everyone who is part of a
problem situation based on notion that each brings knowledge or expertise
needed to address the problem and feel ownership of the solution. (TCCCAC 2008: 11).” We can also point
to the
ethical principle of providing patient-centred or family-centred care
“which is to organize and provide therapies, services,
interventions and interactions in ways that respect and respond to the
patient’s or family’s values, preferences, decisions or self-identified best
interests (Trillium 2008: 12),”
and utility. The Catholic Health Ethics Guide also supports full
engagement with families in decision-making. Article 89 states that “Treatment decisions should reflect an agreement
among all those involved in the care of the person, including family members
and those who are significant in the person’s life. (Catholic Health
Association of Canada 2000: 56)” Chan’s research found that “familist
physicians were prepared to interact with the patient and close relatives as a single
unit,” and that more than half of the physicians in the study “would see
usually see the patient and the family together so that all three parties could
make a joint decision together (Chan 2004: 199).”
I personally experienced ethical (moral) distress when the
children answered on their mother’s
behalf at times when she could well have had full mental capacity. This led to
ethical uncertainty which occurs “when it is unclear what ethical principles
are at play or whether or not the situation represents an ethical problem (Trillium
2008: 10).” What complicates the case is that, unlike families having
individual members that follow different religions, all family members
intimately share many of their values from their shared Tibetan and Buddhist
heritages. Also, it was not entirely clear at
times if the mother, when having mental capacity, acquiesced
to her children out of the knowledge that they would decide for her in exactly
the way she would decide for herself or for some other reason such as fatigue
or power imbalances within the family. One of the children was a bit
overbearing, which leads to some suspicion of the latter being the case. With
both possibilities, it still remained important to clearly establish the
patient’s values and vested decision-making power. Again, the condition of
empowerment would suggest that ongoing capacity assessments, thorough
translation when she had capacity and elaborate deliberation when she did not
have capacity would be the best course of action to ensure Mrs. Pasang as a
full decision-making participant and negate any of the other possibilities that
lie outside her best interests. If there is resistance from the children in
following these recommendations, the condition of publicity can be evoked. This is the requirement that the “framework (process), decisions and
their rationales should be transparent and accessible to the relevant
public/stakeholders (Daniels & Sabin, 2002).” This does not at all harm the
inclusiveness of patient-centered care, but rather affirms it. The condition of
compliance, or enforcement, of publicity can be pursued by any HCP that notices
any gaps in transparency by recourse to the internal hospital policies in the
Catholic Health Ethics Guide, which puts patient-centred care and
family-centered care together: this document itself demonstrates that they
cannot exist independently.
3)
Pronouncing death
without physical assessment
Lastly, in the interest of fulfilling
the religious wish to not touch the body after vital signs become absent, can
it be said that the physician was neglectful? Was there the risk that the patient
actually still had vital signs? Should the physician be required to do a
physical assessment of the patient to pronounce death?
In upholding the values and wishes of
Mrs. Pasang, the physician affirmed many ethical principles: autonomy, dignity,
diversity, patient-centered and family-centered-care. Since the patient was
expected to die soon, she was receiving palliative comfort measures which
includes the stoppage of certain treatments such as aggressive pain management
and turning in bed by HCPs. Even if the patient still had vital signs
unobservable without a physical assessment, there would have been no change
to her treatment or lack thereof. Because of this, without a
physical assessment to pronounce death, the physician did no harm to the
patient and thus still maintained beneficence, non-maleficence and an
additional ethical principle of ensuring safety, the definition of which
is to “avoid injury and reduce
risks of harm to patients, research participants, families, staff and other
members of the community; promote a culture that reports errors and near-misses
and strives to improve the safety of clinical, research and organizational environments.
(Trillium 2008: 12).”
As we determined earlier, because there
is no federal or provincial legislation, nor public hospital-specific
regulations as to the manner of establishing death for pronouncement, integrity
was maintained and there was no conflict of interest for this physician to not
do a physical assessment of the patient when her death was reported by HCPs.
The physician used their own observations to determine the absence of vital
signs. They were, however, a bit fearful of the environment. A death had
occurred and the room was heavy with the sorrow of the children, there was the
presence of supportive HCPs and (perhaps) a palpable religious tone that had
come from activities such as the phowa ritual. Due to this, the
physician observed the patient from the curtain that divides the room in half,
about six feet from the bed. They could easily have refrained from touching the
body and still done a closer observation to look for a loss of the rising and
dropping of the chest, and to feel with the hand by the mouth and under the
nose to feel for the loss of breath, both of which accompanies respiratory
failure. There was no fault, but a more thorough assessment could have been
done while still following the patient’s wishes.
The main condition that applies to this
aspect of the case would be relevance,
where the non-physical assessment is on the “basis of reasons (i.e., evidence, principles, arguments) that
“fair-minded” people can agree are relevant under the circumstances (Daniels
& Sabin, 2002).” The expected nature of the death, and the religious wishes
of the patient and family, are valid reasons for the physician to not be
required to touch the body.
Conclusion
Our bioethical investigation of a
Buddhist death in a Toronto Catholic hospital occurred in several stages.
First, in a manner in accord with religious and Buddhist studies we established
the importance given in Buddhist traditions to death determination based on the
loss of heat, which points to a model closer to cardiac or somatic death rather
than brain-death. This is unlike medicalized death-determination. This was
followed by a discussion on the critical nature of the last moment of
consciousness in Buddhist traditions, in that everything that precedes actual
death is considered to be influential, positively or negatively, on what
follows. This provided an introduction to the internal logic that likely guided
our patient’s decisions regarding her death care in hospital. Particularly, she
wished to not be disturbed physically and by way of noise pre- and post-mortem,
and to have particular Tibetan Buddhist last rites. Since the transference of
consciousness phowa ritual was performed on her behalf as one element
that she considered to be of beneficial influence on her departure and future
life, we examined the practice closely. Relying on The Tibetan Book of the
Dead, we looked at both phowa performed before death and at death, the
latter having five types. From among those five, we found that the third phowa
into the nirmāṇakāya to be the most likely candidate for that performed at
our patient’s death because it requires a lying posture she was able to hold
and requires the assistance of others. This type of phowa focuses on the
consciousness exiting by way of the nose, but it is also possible that the
religious expert was aiming to assist the patient to exit by way of the crown
since this is so prevalent in the phowa materials. Also, the aim of the
practice was found to be the attainment of buddhahood at best, and the
avoidance of a lower rebirth at least. Based on an earlier discussion on phowa
as tantric or not based on the presence of deities, the lack thereof in phowa
into the nirmāṇakāya suggested that our patient might not have been a
tantric practitioner of phowa and could have had faith in the efficacy
of the ritual itself, perhaps combined with the effectiveness of the ritual
expert who was in fact her Lama.
The bioethical section of the study utilized
the Butcher and IDEA ethical decision-making frameworks. It began with a discussion
on methodology, a narrative of the event, followed by an analysis which focused
on three key problems uncovered in the case: (1) interference with the
patient’s unique Buddhist religious wishes for death-care by Health Care
Professionals; (2) communication difficulties between the interdisciplinary
hospital team and the patient and her family, who were Substitute Decision
Makers; and (3) the pronouncing of death by the physician without a physical
assessment of the patient based on the patient’s unique Buddhist religious
wishes to be undisturbed after death. In the chapter on ‘issues,’ we formulated
an ethical context by identifying ethical issues, principles and relevant
hospital policies or goals at play within our three problems. The ethical
principles featured in our case were autonomy, beneficience, non-maleficence,
dignity, solidarity, utility, conflicts of interest, integrity, diversity,
transparency, inclusiveness, patient-centred
or family-centred care and ensuring safety. Looking
closely at the Catholic Health Ethics Guide, it was determined that in the
document primacy is given to patient values, beliefs and wishes over the Catholic
missionary vision. This answered a key question as to whether an HCP can
effectively fulfil the unique religious wishes of a dying patient if their
worldviews are dissimilar. The Catholic Health Ethics Guide followed by the
hospital compels them to do so. Regarding communication barriers, we
established that the patient’s children are only able to act as SDMs when their
mother lacks capacity, and not at any other time. As for the physician’s
responsibilities in pronouncing death, we found that there is not necessarily
regulation on any level (federal, provincial, institutional) as to the manner
of death pronouncement. After establishing the relevant stakeholders in our
case, which included some discussion on best interests and the role of the SDM,
we suggested the following assessments:
(1) HCPs must be required to place patient interests over their
own, be it reliance on hospital routine or their personal beliefs. HCPs can be
encouraged or required by healthcare institutions to engage in education on religious
and cultural diversity to prevent unfamiliarity with their patient demographics.
Healthcare institutions can implement ways to restrict HCP abuse of hospital
privileges and resources in ways such as: clearly indicating the requirement
for patient permission to enter their rooms, and controlling rooms designated
for the use of patients and families.
(2) Language barriers neither determine capacity nor can
they be an excuse to exclude patients from decision-making. Every attempt must
be made to determine capacity regularly, and direct communication with
non-English-speaking patients by way of translation in both directions is the
best way to determine their wishes, and this practice does not exclude the
participation of the family. It supports a combined approach of patient- and
family-centered care. SDMs acting on behalf of patients without capacity should
deliberate slowly and carefully, relying entirely on the patient’s known wishes
and not their own.
(3) In the case of a patient whose death was expected, if
requested a physician can perform the customary death pronouncement without a
physical assessment and avoid compromising any regulations or ethical
principals. Even if a patient still had vital signs unobservable without a
physical assessment, with an expected death there would be no
change in treatment or lack thereof. Although not necessary, to be very
thorough the physician can feel for the presence or absence of breath by
placing their hand close to the mouth and nose and still avoid touching the
patient.
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