Buddhist Deaths in Hospital: Narratives and Case Analyses

I am in the process of collecting anonymized narratives of Buddhist deaths occurring in hospitals. My aim is to look at the challenges and triumphs of such occurences, to assist with future problem-solving when caring for diverse populations in end-of-life care in general, and dying Buddhists in particular.

This is a work-in-progress so any contributions and feedback are most welcome. No identifying information will be posted and some details may be altered to ensure confidentiality.

Below is one case run through an ethical framework.

A Brief Case Analysis of a Dying Tibetan Buddhist of Canadian Descent utilising Dr. Robert Butcher’s “Framework for Ethical Decision-Making”

Applying Dr. Robert Butcher’s “Framework for Ethical Decision-Making” to the case of Ms. T, a patient with a brain-tumour in a Toronto Catholic hospital palliative care unit, will involve outlining the details of the case to be examined, followed by: (1) determining the problem, (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.[1] Subsequently, the strengths and limitations of Dr. Butcher’s framework will be compared and contrasted to the the IDEA: Ethical Decision-Making Framework.[2]

Setting the stage and determining the problem

Ms. T is a Canadian-born, 40-year old female with an inoperable brain-tumour and a prognosis of two months to live. She was admitted to the Medicine Unit of a Toronto hospital with vertigo and headache symptoms, and rapidly deteriorated. Her speech underwent periods of dysphasia, neuropathy and reduced motor control led to unsteady gait and reduced mobility and a general lack of ability to perform activities of daily living. This combined with 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 complained of pain. She was moved to the palliative care unit several weeks ago, on the recommendation of the interdisciplinary team, particularly the primary physician, some key nurses, the social worker and chaplain. Deemed incompetent to make the decision herself, the decision to move Ms. T was done in collaboration with several people close to the patient, two of whom are substitute decision makers. Ms. T is unmarried, and has no family save an older brother who visits often but he has a history of mental health problems and his visitation has been restricted due to his erratic behaviour and verbal abuse of staff. The brother, along with a close female friend of Ms. T, are the substitute decision makers and there is a “Power of attorney for personal care” document in the chart which contains robust information regarding Ms. T’s decisions for advance care planning in almost every area, from the non-usage of such heroics as CPR to funerary arrangements.

Although from a Christian family, Ms. T has been a Tibetan Buddhist practitioner for the last 20 years. She is close with her teacher in the city, a monk, and has made many trips to India, Nepal and Tibet and regularly attends temple activities. She also practices at home, meditating, chanting and reading texts in front of her shrine. Her teacher, Lama Tsultrim, visits her every day and her close friend and brother know that although he is not a substitute decision maker, Ms. T puts great stock in his views and advice as she has trust and faith in him. Additionally, a hospital staff member who is a nursing assistant on another unit that is managed by the same nurse who manages the palliative care unit happens to be a Tibetan Buddhist monk also of Canadian descent, and the nursing staff have requested for him to visit Ms. T since she is often alone. Both monks would talk and chant together with Ms. T, and reads texts to her. All of this is indicated in the chart.

Two weeks into her stay, one of the hospital chaplains (who is also a Catholic priest) started to wheel Ms. T to daily Mass in the hospital chapel. It is unclear how this came about but the nursing staff certainly participated in this activity, since their permission is required for the patient to leave the unit, even if there is no way of knowing if it was their idea initially.
The nursing assistant monk, (Ven./Br.) Tyler, who was hospital staff but previously visiting Ms. T in the capacity of clergy was sent to the palliative care unit one day to do a shift. Shared staffing is a common occurrence given that there is one manager for both units. While the nurses and aides listened as a group to the morning taped-report in the staff lounge, Ms. T’s night nurse said, “Ms. T has re-embraced her Catholic faith,” indicated that she was attending Mass with the chaplain-priest and advised to “not inform the Buddhist clergy.” One nurse nudges Tyler, fully knowing the context, and says “don’t take it personally.”

Specifically, the problem that requires solving is the manipulation of the vulnerable patient by having her engage in religious activities that she would not choose to be a part of were she competent. This problem survives both by the inaction of those who do not see the ethical dilemma, and the deception of those who collude to keep this breach of trust under wraps from those who will recognize it as such. Because it is hard to say if other nursing staff know about the patient’s incompetency and the incongruency between actively involving her in religious activities that are at odds with her own faith, at this moment Tyler is responsible for taking action since he is the only one who has an active and vested interest in fulfilling the patient’s particular spiritual needs. He needs to openly point to the problem, but the question is: in what manner and to whom is he to make the problem known?

Issues

Formulating an ethical context requires teasing out the ethical issues and relevant hospital policies or goals at play in this problem. Autonomy, beneficence, non-maleficence, integrity, dignity, diversity, conflict of interest, and transparency are all weighing in with this situation. Ms. T’s beliefs and autonomous wishes with regard to spiritual care are clearly known despite being out of the ordinary and her lacking in capacity, and they are not being respected. The diversity demonstrated by such a unique worldview being held by a Western Buddhist is trampled by wheeling her to a church service involving sacraments, a major conflict of interest for the healthcare providers who are caught between injunctions to care for patients on their own terms and the missionary push in Roman Catholicism. Their integrity is in jeopardy since a strong missionary drive might override giving priority to ethical considerations, and allow violations of ethical requirements to pass unnoticed. In this way 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. Although brought up in report, and most likely documented in the chart, the process that led to the patient being brought to church is opaque because someone surely would have done something to interfere if they had all of the pieces of this ethical puzzle: the patient’s current inability to make decisions, her history which includes her religious orientation, the presence of formerly expressed wishes and the support of her advocates (brother, friend and clergy).
Institutionally, this hospital’s operation is guided by the Catholic Health Association of Canada’s Catholic Health Ethics Guide. In Section I, The Communal Nature of Care, we see the following articles under Health and Healing:

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.[3]

The opening section of the document places great importance on an individual’s spirituality, and see it as a crucial component in promoting and restoring health. 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. [4]

Here we may become concerned that ‘spirituality’ has now become too narrow. It is important to note here that the staff demographic at Catholic hospitals is as diverse as the patient population. However, what about the healthcare provider working at such an institution who also happens to be Catholic, such as the priest who is stealing away Ms. T? His ‘vision of life’ may be something kept in check within his mind and among his flock, but in his ‘vision of the world’ is there a compulsion to save lapsed Catholics from themselves by returning them to the faith? 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…[5]

The guide, here, allows for various agendas but brings the objective of Catholic healthcare 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. In section V, Care of the Dying Person, we see these relevant articles with regard to Decision-making and the Dying Person:

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…[6]

Although the organization is meant to hold to a Roman Catholic vision, the guide ensures that this vision is not to impinge on the precedence 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 deny Ms. T her spiritual heritage by careening her off to Mass are not only acting out of accordance with fundamental ethical principles, they are also acting out of accordance with the institution itself.

Stakeholders

The stakeholders in this scenario are the patient, those connected to her such as her brother, friend and clergy, her caregivers, 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 have a hand in bringing her to Mass. They may, with their Roman Catholic vision of the world, see the act of reconnecting her with her familial religion as saving her from certain doom. However, the 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…[7]

For 20 years Ms. T was practicing Tibetan Buddhism and there is no reason to assume that she would suddenly throw this long-standing practice out the window. The missionary agenda of the Catholic members of the team may be relying on the idea that “[c]apacity can change over time…[where] a person may be temporarily incapable because of delirium but subsequently recover his or her capacity.”[8] They could very well try to point to Ms. T’s moments of lucidity as the occasions during which they re-engaged her, with her consent, in Catholicism. This is risky given both the very strong ground her documented history and the SDM advocacy (in relation to her religious practice) stand on, and the unreliability of her changing mental status (which is sometimes momentary). 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.”[9] 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 speak to the substitute decision makers when the patient is incapable, and both SDMs advocate for the patient’s unique religious wishes. Additionally, even though both clergy members are not substitute decision makers, and despite one clergy having a dual role that includes being on the healthcare team as well, both are vested in helping fulfil Ms. T’s Buddhist spiritual needs.

Options and Assessments, Decision, Implementation

Tyler, the monastic nursing aide, is compelled by many forces to act: bioethical principles such as autonomy, beneficence, non-maleficence, integrity, dignity, diversity, transparency, and the avoidance of conflict of interest all are very much in line with both the Catholic ethics of the institution and the vows of non-harm of a Buddhist monastic. The question is, what is the best action to take?

Tyler can speak out directly to the nursing staff during report, at the time when the actions of the priest are revealed for the first time to someone in his unique position of being in two overlapping fields of the patient’s care: spirituality and healthcare. He can also go to the charge nurse, or to the manager, in private. He could choose to approach the unit’s bioethicist for advice. Alternatively, he could go to the nursing co-ordinator for the hospital, or to the head of spiritual care.

There are potential repercussions of approaches to broaching the problem that are kept within the unit and those taken outside the unit. Since this activity of bringing the incapable Buddhist off the unit to Catholic Mass happened over the course of some time, without interruption, it is likely that there are many within the unit that participated or ignored it, tacitly assenting by way of silence. If brought up directly to the unit staff, the nurses could find ways to shut down a process of inquiry to protect each other and the manager, also a nurse, could be a very strong advocate for her nursing staff and defend them by explaining the situation away as a simple misunderstanding. Alternately, going to anyone outside of the unit, although reasonable, could very well be seen from within the unit as jumping rank and could affect Tyler’s future relations with nursing staff. Regardless, this seems to be the best option given the signs of collusion within the ranks of the palliative care unit. Care must be taken not to jump too high too fast among those approached outside of the unit, because it could be that the higher the position held by staff outside the unit, the more dramatic the response to the problem. An extreme response might not be required for the desired effect of protecting Ms. T from being subjected to religious activities that are not part of her chosen tradition. Judging by the actions taken to put a stop to this by one’s allies outside the unit itself, and the effectiveness of the results obtained, will be a good indicator of whether Tyler has brought the issue high enough in hospital hierarchy or if more is required.

Butcher vs. IDEA: Ethical Frameworks Compared and Contrasted

Both frameworks have their place and have much to offer when used for addressing ethical problems, but, in general, Dr. Butcher’s is best for direct and immediate application whereas the IDEA framework is more suited to a problem that might be more complicated and that which requires being approached over a lengthier period of time.

Dr. Butcher's ethical framework provides a clear methodology for approaching difficult issues, unburdened by too much information and many sub-processes within each step. Easily and efficiently applied to ethical dilemmas, it is, however, thin when taken only on its own. It is not fleshed out with charts or additional information, such as a glossary of important terminology. It leaves much to the imagination, which can be helpful in leaving room for a creative approach to ethical dilemmas, but it can also leave participants (who are already in a difficult spot) grasping for more.

Although the IDEA framework has a simple overall scheme, with four steps, it is lengthy and includes not only multiple processes within each step but also the requirement to meet the five conditions of empowerment publicity, relevance, revisions/appeals and compliance/enforcement. This makes it a very rigorous approach, but perhaps more difficult to apply with expediency. The inclusion of appendices, such as an outline of various ethical principles and such distinctions as those between ‘ethical violations’ and ‘ethical dilemmas,’ give the user more material and guidance to assist with addressing a situation if they have an abundance of time to do so.

References

Butcher, Dr. Robert (2009); Framework for Ethical Decision-Making; Foundations: Consultants on Ethics & Values Inc.

Catholic Health Association of Canada (2000); Catholic Health Ethics Guide.

Etchells, E. et al (1996) Bioethics at the Bedside, CMAJ.

Health Care Consent Act (Canada), 1996. (As of August 31, 2007)

The IDEA: Ethical Decision-Making Framework builds upon the Toronto Central Community Care Access Centre Community Ethics Toolkit (2008), which was based on the work of Jonsen, Seigler, & Winslade (2002); the work of the Core Curriculum Working Group at the University of Toronto Joint Centre for Bioethics; and incorporates aspects of the accountability for reasonableness framework developed by Daniels and Sabin (2002) and adapted by Gibson, Martin, & Singer (2005).

Wahl, J. (2003) 25 Common Misconceptions about the Substitute Decisions Act and Health Care Consent Act; Advocacy Centre for the Elderly.

[1] Butcher, Dr. Robert (2009); Framework for Ethical Decision-Making; Foundations: Consultants on Ethics & Values Inc.
[2] The IDEA: Ethical Decision-Making Framework builds upon the Toronto Central Community Care Access Centre Community Ethics Toolkit (2008), which was based on the work of Jonsen, Seigler, & Winslade (2002); the work of the Core Curriculum Working Group at the University of Toronto Joint Centre for Bioethics; and incorporates aspects of the accountability for reasonableness framework developed by Daniels and Sabin (2002) and adapted by Gibson, Martin, & Singer (2005).
[3] Catholic Health Association of Canada (2000); Catholic Health Ethics Guide; p.20.
[4] Ibid.; p.21.
[5] Ibid.; p.21.
[6] Ibid; pp.56-57.
[7] Health Care Consent Act, 1996: c.2, Sched. A, s. 59 (1)
[8] Etchells et al 1996: p.18.
[9] Wahl 2003, p.11.