Sean Hillman, PhD student (Department for the Study of Religion, University of Toronto)
2013
Introduction
The concern of my overall doctoral research project is the influence of religion on adherents’ views of health and disease/illness in contemporary India and how this affects health care decisionmaking, particularly those at the end-of-life. To begin to understand the processes of health care decision-making in India, both in theory and practice and with particular concern for the players involved and the respective power they wield, I will delve into two textual genres from within law and anthropology, and subdivide the paper accordingly. They are: (1) judicial proceedings, and (2) anthropological surveys.
Judicial Proceedings
Jyotica Pragya Kumar’s dissertation Informed Consent in Judicial Discourse: India and Canada 1996-2003 for a University of Toronto Sociology doctorate contains a chapter on “A Profile of the Doctor-Patient Relationship in India.” This section proved indispensable in beginning the process of discovering court proceedings that address the issue of health care decision-making in contemporary India. Kumar first establishes the nature of the doctor-patient relationship in India:
The relationship between the doctor and the patient is not a ‘contract of service’ - an expression which implies a master-servant relationship and involves an obligation to obey orders in the work to be performed and as its mode and manner of performance. A patient, on the other hand, cannot command the doctor to administer to him or her particular treatment if the same is not prescribed or approved by the latter. The relationship between the two is, at most, a ‘contract for service’, which signifies a contract whereby the doctor undertakes to render professional services, in the performance of which he is not subject to detailed direction and control by the patient. The doctor exercises professional judgment and uses his or her own knowledge and discretion quite independent of the patient (footnote 3: See Indian Medical Association v. V.P. Shanta and others, AIR 1998 Supreme Court 550 at 561 (para. 41) (26).
Within the context of this relationship, “a doctor’s professional decision-making functions are broadly divided into three phases: ‘diagnosis, advice and treatment’ (f16: Per Lord Bridge in Sidaway v. Bethlam Royal Hospital Governors and others, (1985) 1 All E.R. 643 (H.L.) at 660 c.)” (29). Although Kumar determines that “out of these, the functions relating to ‘diagnosis’ and ‘treatment’ have been clearly held to fall within the ambit of professional decision-making” (29), she distinguishes them from the phase of ‘advice’:
…the term ‘advice’ is used in a wider sense to cover “information as to risk and options of alternative treatment.”… Two lines of thinking, representing two different approaches, are in vogue. One view is that the determination of the doctor’s legal duty to advise is a matter of medical judgment, the professional decision-making. The other view is that this duty to advise cannot be left to the doctor’s judgment, because it is essentially a matter that impinges upon the right of a patient to ‘personal decision-making.’ India, following the English courts, has adopted the former approach, which gives primacy to the doctor’s decision-making for the patient; whereas…the latter approach…emphasizes the autonomy of the patient’s eventual decision-making… Since India has hitherto adopted the British approach, it would be in order to take note of the decision of the House of Lords in Sidaway, which gives primacy to the decision of the doctor over the patient (31-32).
With both the interpretation of “contract for service” in the Indian Medical Association case and “advice” in Sidaway lending judiciary strength to the physician’s independence in decision-making in India, we see not only the autonomy of the patient endangered but both collaborative and heteronomous decisionmaking models rendered difficult or impossible. I construe “collaborative decision-making” as that involving at least two parties, and “heteronomous decision-making” as that involving at least three parties having particular roles. My definition and usage of these terms will be explained in more detail in our case study later. From the Supreme Court ruling in relation to another case, Achutrao Haribhau Khodwa and others v. State of Maharashtra and others (AIR 1996 SC 2377), it is made “evident that the ambit of the decision-making authority of the doctor in India is very wide and almost unrestricted. This is amply clear as a matter of law as well as practice that if, in a given case, more than one course of treatment may be available for treating a patient, it is the doctor, and not the patient, who decides which course is to be adopted” (37). With one qualifier rendered useless by context specificity, Kumar concludes that the predominant decision-making model leaves all of the power in the hands of the physician:
The only restraint is that he ‘must bring to his task a reasonable degree of skill and knowledge and must exercise a reasonable degree of care.’ For meeting the standard of ‘reasonableness’, what is expected of the doctor is neither ‘the very highest’ nor a ‘very low degree’ of care and competence, judged in the light of the particular circumstances of each case. This is ‘what the law requires’ in India, and this is the law, which has been again affirmed by the Supreme Court recently in Vinitha Ashok v. Lakshmi Hospital… We may describe this approach as ‘doctor-centric’ (37-38).
In addition to the unclear nature of ‘reasonableness,’ the principle of ‘best interest’ is mobilized to protect doctors during litigation. During a 1991 appeal in the case of M.K. Verghese v. San Joc Hospital (39), the court’s observation “reflects the predominance of the ‘doctor-centric’ approach” since “‘informed consent’ in India just means informing the patient what the attending doctor did or intended to do in the best interest of the patient without the necessity of having any return response from him or her (patient)” (43). A trend crippling to both autonomy and collaboration in decision-making, Kumar’s “analysis of the Indian cases reveals that, hitherto, the patient’s autonomy to decide for himself or herself is completely absorbed into the decision-making authority of the doctor” (44). She notes, however, that the trend is shifting:
…the smooth functioning of doctor-patient relationship seems to be premised on the unwritten understanding of patient’s complete faith, trust and confidence in the capability of the doctor. However, cases have started coming to the courts, increasing in number, showing a questioning of doctor’s authority, which until relatively recently, was beyond reproach… [With] increasing awareness of the people at large generally, and the patient population in particular about their rights…[, there is a new] trend of asserting rights against doctors, and thereby changing their paternalistic attitude (46-47). Another judicial move found in Chandra Shukla v Union of India (AIR 1987 ACJ 628) and mentioned by Omprakash V.Nandimath of the National Law School of India University in Bangalore, has hindered the paternalism of Indian doctors:
For the fist time in India, the court ruled that however broad consent might be for diagnostic procedure, it can not be used for therapeutic surgery. Furthermore, the court observed that "where the consent by the patient is for a particular operative surgery it can't be treated as consent for an unauthorized additional procedure involving removal of an organ only on the ground that it is beneficial to the patient or is likely to prevent some danger developing in the future, where there is no imminent danger to the life or health of the patient". This proposition puts fetter upon the role of a "paternal doctor" in the Indian scenario. (344)
In addition to Kumar’s assessment that such “development signals that the society in India has also started moving gradually in the direction of individual autonomy” (49), I hold that it also paves the way for collaborative decision-making models to make their way into Indian hospitals.
Despite a discussion on the increase of malpractice suits against physicians, strangely Kumar does not give any examples of courts ruling in favour of patient complainants in malpractice suits against physicians, which supports her argument that although moving towards patient autonomy, consent and decision-making remains doctor-centric. However, Nandimath cites Maneka Gandhi v Union of India (AIR 1978 SC 597) in which the courts ruled in the patient’s favour. This case is very similar to many cited by Kumar where the scenario has a surgeon opening up a patient to deal with one organ in a particular way and removes another organ without consent because it is found to be unhealthy. The crucial difference in this case is the removal of the unhealthy organ led to another organ being compromised. Nandimath also attempts to broach the topic of the processes of ranking of Substitute Decision-makers (SDM) but without any evidence since judicial or institutional regulations that might control the practice are absent: “Regarding proxy consent, when the patient is unable to give consent himself, there are no clear regulations or principles developed in India. If such a situation exists, the medical practitioner may proceed with treatment by taking the consent of any relative of the patient or even an attendant” (345, emphasis added). Without a legal ranking of SDMs the danger that I can see is that relatives that are close by way of proximity rather than by relation might be treated as SDMs. In ranking SDMs, Canada’s Health Care Consent Act favours spouses, partners and relatives in descending order with regard to decisionmaking. ‘Spouses’ are defined by marriage, co-habitation, or having a child together (c.2, Sched. A, s. 59.7), whereas ‘partners’ are defined as those with a “close personal relationship that is of primary importance in both persons’ lives” (c.18, Sched. A, s. 10) and would of course accommodate same-sex couples. These relationships are given prominence by the legislation. Next, ‘relatives’ are defined by “blood, marriage or adoption” (c.2, Sched. A, s. 20.10). In theory, the logic behind privileging close kin as defined by the patient is to get as close to possible to the patient’s autonomous wishes in determining courses of action that are in their best interests. Despite such legislation, in practice I have observed too many times to count that those close to the incompetent patient in proximity are the main source accessed by health care teams during difficult decisions. Igor Pietkiewicz, a Polish medical anthropologist in Tibetan Studies, notes that “[h]ierarchy and subordination within technomedicine is expressed in the relationship between individual and institution, in which hospital routines are subject to the convenience of the medical staff, not the patient” (Pietkiewicz 39). This is often the case with regard to decisionmaking in Toronto hospitals. It is simply easier to make decisions with people physically present regardless of where they fall in the hierarchy of suitable SDMs. This practice of accessing proximal patient relations over those with degrees of closeness, which I have observed in many hospital contexts but particularly within critical care areas such as Emergency and Intensive Care where lives usually hang in the balance, is exacerbated by time-constraints, degree of seriousness of the patient condition and language barriers. Nandimath points to a conflation of spouses, partners and relatives by blood, marriage or adoption with the term “relatives” in an Indian health care context.
Anthropological Surveys
Mining the
Journal of the Anthropological Survey of India for articles related to health and decision-making yielded some interesting data spanning two decades. Articles of interest cluster in the early eighties and around the cusp of the new millennium, and I will address them chronologically. I have left spelling and grammatical errors from the original articles intact and have not indicated such mistakes save for one glaring mispelling.
In Asha Datta’s 1982 article “A Study of Diagnostic Patterns of Mental Illness in Calcutta Hospitals and their Relation to Some Social Variables,” the investigator attempts to uncover the “belief about mental illness held by persons coming into contact with the ‘mentally ill’” since it “is of significance in proper diagnosis, prompt treatment and effective aftercare of the patients” (85). Informants were “the relatives of some of the out-patients” and “were approached to assess their belief about mental illness and their attitude towards their respective patients” (86). As was found in Nandimath with regard to the term ‘relatives’ in substitute decision-making, the various types of these relationships are not distinguished. The questionnaire results were subdivided into several models. Within the “Family model…There are many who…ascribe to the belief that the family is responsible for the illness and cure of mental patients” (93). The “Intrapersonal model” showed that some “agree that the patient is responsible for his own condition; and cure,” and in the “Social model…90% of [respondents] hold the society responsible for the treatment” (94). As shown above, the lack of symmetry in the presentation of results makes it difficult to say much other than most adhere to the ‘social model’ and people to a greater or lesser degree hold to the others. It is also not made clear what is meant by either ‘society’ or ‘responsibility.’ Does the former include private citizens, health care professionals and institutions as well as governmental bodies? Does the latter include both resources and decisions? Another statement not made entirely clear is the finding that “[t]he attitude of relatives of patients is benign,” but could mean that relatives do not begrudge the mentally ill family member for the burden their illness bears on them since “[t]he patient is viewed mostly as dependent” (95). This at least tells us that in 1982 Calcutta, decisions were more likely to be made by those other than the mentally ill patient themselves. We can surmise that competence would have much to do with this.
Bhowmik and Pal’s 1984 “Indigenous Health Practices Among the Nocte of Arunachal Pradesh” focuses on a group that “occupies the Central part of the Tirap District of Arunachal Pradesh numbering 24, 292 according to 1971 Census” (36). Regarding “Disease and treatment … Generally the professional expert among them is consulted in case of long suffering or any complication. The medicineman prescribes material of either plant or animal origin” (41). There is no mention of any negotiation around prescriptions so it might be safe to say that such decisions for traditional treatments are made by such healers for the patient. However, in the context of the “Impact of Modernization” the investigators found that “[i]n most of the injury cases, the Nocte like stitching which is done in the hospital” and that “[n]ow-a-days the Nocte prefer injection than oral medicines. The idea prevails that in injection entire medicine is accepted in body whereas in oral medicines some may go out of body through body secretions” (51). This indicates to me some degree of autonomy exerted among this group in relation to biomedical health care professionals as they seek out particular interventions, and accept certain treatments and refuse others.
In Kumari’s 1997 “Health Hazards among the Tribals and their Cultural Cognition for Modern Medical System: A Case Study of Rajendra Medical College and Hospital, Ranchi,” tribal use of hospital interventions is again investigated but this time in the second most populous city in the state of Jharkhand. One of the researcher’s main findings is significant to decision-making, but not surprising:
...in the hospital, there exists communication gap between the poor illiterate patients and specialists…. One of the important reasons why the tribals use folk modes of health care, because the patients and his relatives feel they can talk more freely to folk medicinemen than with modern physician. The interpersonal relationship between tribals and folk practitioners on one hand and the rural tribals and modern medical practitioner on the other hand are considerably different. Thus there exists a communication gap on emotional plane in the hospital between the patients and professionals.
On the contrary to the indigenous medical practices, western system of medicine is alien to the cultural pattern of the rural folk. Modern doctors fail to lounch [sic] their scientific advice in terms which fit on already existing cultural pattern creating gap on cultural plane. Thirdly, practitioners of modern medicine come from well to do families. By their education and training they tend to be sophisticated. This leave a gap between intellectual level of the practitioners and the illiterate patients. There is an enormous social distance between the two groups (83).
In this case, patients are disempowered in decision-making processes due to several factors: lack of familiarity with biomedicine; technical language usage by physicians; and social stratification. The article concludes with the recommendation that “[t]he health care system has therefore to be deprofessionalize…to provide better services to poor masses…” and among nine suggestions gives this: “Efforts should be made to fit the practice of medicine to the role that is appropriate to social system of the tribal people. Educated young tribals of both sexes should be recruited as health staff in health centres who will able to understand their own affairs promptly” (84). Although not elaborated upon, obstacles arising from gender relations is a notable concern.
Banerjee’s “Some Psycho-social Problems of Old Age among the Bengalis of Meghalaya” in 2000 “tries to highlight the role of Bengali aged people in the family in terms of decision-making processes” (69). It is unfortunate that health care decisions were not included in this survey. Regardless, it was found that:
It is generally believed that in changing life-style and increase in average longevity, the aged people in the present time are not enjoying the same respect and position as their predecessors used to enjoy in their days. With this view in mind we have examined in this section to what extent their opinions are being valued in family affairs like (i) financial matter, (ii) marriage of children, (iii) children’s education, iv) participation in social activities (77).
Although not done in the article, I extrapolated the results by combining all family affairs. There is a great discrepancy based on gender. For males, 37.7% of decision-making is done by themselves, 50.6% jointly with spouse, and 11.7% by the children on their behalf. For females, 24.6% of decision-making is done by themselves, 20.7% jointly with spouse, and 54.7% by the children on their behalf. The most significant difference is between decisions made on behalf of male and female elderly by their children. Combining the results, overall for the Bengali aged at this time joint decisions are the majority (35.7%), with decisions by children coming next (33.2%) and lastly self-driven decisions (31.2%), with only a 4.5% range between them all (78). Despite the decision-making models having quite rigid boundaries, excluding combinations that would allow for collaboration between parents and children for example, the data showing that joint spousal decisions predominate, and not proxy decisions, is an impressive result.
Bhowmik, one of the same investigators in the 1984 A.P. study, in the 2003 article “Indigenous Health Practices among the Digaru Mishmis of Arunachal Pradesh” showed only that patriarchs seek out medical treatment on behalf of family members since “[d]uring injuries and ailments of complicated nature, the professional medicine man is approached. The head of the family consult the local medical expert from among the villagers” (4).
Lastly, Behura’s 2003 article “Health culture, Ethnomedicine and Modern Medical Services” focuses on the “Saora, a major tribal group of the Indian state of Orissa” (27) and found that “[t]here are several factors which influence the decision-making process of the Saora. The first and foremost factor is their tradition and their confidence in the age-old mode of diagnosis and treatment of disease by their medicinemen” (54). As with the Ranchi and Nocte tribals there is reliance on local healers for traditional medicine treatment regimes. And like the Ranchi tribals, we can only surmise that there is a similar lack of familiarity with biomedicine that would hinder participation in treatment decisions in such fora.
Conclusion
With regard to judicial proceedings of malpractice suits against physicians in India, both Kumar and Nandimath agree that a paternalistic ‘doctor-centric’ model of decision-making has predominated and Kumar points to the principles of ‘reasonableness’ and ‘best interest’ being exploited for the purpose of protecting physicians from liability. The two scholars also agree that a shift towards patient autonomy is evident by an increase in malpractice suits and those that are ruled in the patient complainant’s favour. To autonomy I add that such a shift also increases the potential for more balanced collaborative decision-making. Nandimath also makes it clear that SDMs are chosen without much discrimination, which leaves open the possibility for proximal rather than closely-tied relations being chosen out of convenience rather than determining SDMs based on who would most likely have the patient’s best interests at heart.
Studies from the
Journal of the Anthropological Survey of India had various results with regard to decision-making including: a prevalence of dependency among mentally ill patients in 1982 Calcutta; some autonomy with regard to biomedical treatment decisions among the Nocte of Arunachal Pradesh in 1984; utter disempowerment of tribals in 1997 Ranchi hospital decision-making due to lack of familiarity with biomedicine, the technical language of physicians, social stratification and gender relations; a significant difference between decisions made on behalf of female and male elderly by their children (higher for females with a 53% range) and an impressive predominance of joint spousal decisions among elderly Bengalis of Meghalaya in 2000; family patriarchs among the Digaru Mishmis of Arunachal Pradesh in 2003 seeking out medical treatment on behalf of family members; and finally, reliance on local healers for traditional medicine treatment regimes and a lack of familiarity with biomedicine among the Saora in 2003. Having briefly explored two textual genres within law and anthropology to begin to uncover health care decision-making in India, I found some temporal and spatial variation but, overall, many signs that patient autonomy has increasing value and that there is room for a collaborative middle-ground between doctor-centric and patient-centric models.
Citations
Banerjee, Mrinmayi. “Some Psycho-social Problems of Old Age among the Bengalis of Meghalaya.” Human Science:
Journal of the Anthropological Survey of India 49 (2000): 69-82.
Behura, N.K. “Health culture, Ethnomedicine and Modern Medical Services.”
Journal of the Anthropological Survey of India 52 (2003): 27-67.
Bhowmik, D.C. and Anadi Pal. “Indigenous Health Practices Among the Nocte of Arunachal Pradesh.” Human Science:
Journal of the Anthropological Survey of India 33 (1984): 35-53.
Bhowmik, D.C. “Indigenous Health Practices among the Digaru Mishmis of Arunachal Pradesh.”
Journal of the Anthropological Survey of India 52 (2003): 1-8.
Datta, Asha. “A Study of Diagnostic Patterns of Mental Illness in Calcutta Hospitals and their Relation to Some Social Variables.” Bulletin of the Anthropological Survey of India Vol. XXIX (1982): 85-97.
Health Care Consent Act (Canada), 1996 (As of August 31 2007).
Kumar, Jyotica Pragya. Informed Consent in Judicial Discourse: India and Canada 1996-2003. UMI Dissertations Publishing, 2005.
Kumari, Pratibha. “Health Hazards among the Tribals and their Cultural Cognition for Modern Medical System: A Case Study of Rajendra Medical College and Hospital, Ranchi.”
Journal of the Anthropological Survey of India 46 (1997): 67-86.
Nandimath, Omprakash V. “Consent and Medical treatment: The Legal Paradigm in India.”
Indian Journal of Urology: IJU: Journal of the Urological Society of India, V. 25 (3), (2009): 343-347.
Pietkiewicz, Igor. Culture, Religion, and Ethnomedicine: The Tibetan Diaspora in India. University Press of America, 2008.