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• Focus on autonomy neglects the essential role of personal interconnectedness
  Shanil Ebrahim
  Published on: 18 May 2017

• Published on: 18 May 2017

  Focus on autonomy neglects the essential role of personal interconnectedness

  • Shanil Ebrahim, MSc

  Informed consent involves several challenges in palliative care including patient autonomy, patient competency, advanced directives, and interpreting the family's role. The goal at the end of the day is the same --providing a quality death served under the best interests of the patient.[1] Dreyer et al. presented key findings in their study including relatives' lack of understanding of their role in decision-making, lack...

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  Informed consent involves several challenges in palliative care including patient autonomy, patient competency, advanced directives, and interpreting the family's role. The goal at the end of the day is the same --providing a quality death served under the best interests of the patient.[1] Dreyer et al. presented key findings in their study including relatives' lack of understanding of their role in decision-making, lack of end-of-life knowledge, and a lack of understanding the concept of patient autonomy. The study illustrated the importance of enforcing national guidelines and internal routines in institutions in order to protect patients who are not competent to give consent. Although the study was performed adequately, the conclusions drawn from the results may be undermined by its insufficient methodological details and in its lack of identification on issues of cross-cultural values during end-of-life.

  Critical steps in the methodology were not addressed. Firstly, it was reported that 8 out of 20 patients were deemed capable or partly capable of giving consent before death. However, the readers are given insufficient information on how patients' competency was evaluated. Secondly, how were relatives' knowledge of ethical and legal considerations examined? Considering the complex nature of these concepts, they may be difficult to evaluate or interpret. Thirdly, although the study explored relatives' subjective experiences retrospectively, the authors did not state this as a limitation. It is widely accepted that retrospective accounts are limited by problems of memory and recall and since palliative care is associated with intense grief, it may lead relatives to repress certain memories or alternatively, disguise them. As a result, this can significantly impact conclusions drawn from these interviews.

  This study also overlooks the attitudes of patients from different cultures and religions that may hold divergent views from that of Western medicine.[1] This is especially important when considering patient autonomy. In many developed nations, the value of independence is the ethical and legal foundation of contemporary medicine--a belief in the uniqueness and sovereignty of each individual life.[2] This focus on self- determination neglects the essential role of personal interconnectedness and the social and moral meaning of inter-relationships that holds utmost importance in many eastern cultures and religions.[1, 2] This may explain the findings presented by Dreyer et al. reporting that relatives lack an understanding of patient autonomy and demonstrated a high degree of paternalism. Although healthcare professionals seldom agree with paternalistic views, this outlook may not be uncommon in many cultures that believe it protects the patient from undue harm and additional suffering. Moreover, due to our differences in interpreting the meaning of illness and/or death, we may not appreciate other cultures' approaches to handling end-of-life issues. This may explain the finding that reported that relatives rely largely on doctor's decisions (common in many cultures) and they had little to no discussion regarding death as it is commonly personified as a "taboo" subject.[3] Considering that many cultures are apprehensive about communicating about death with their relatives, it may not be unreasonable that written living wills or advanced directives are frequently not in place.

  Although I am in agreement with the authors that patient autonomy should be valued, autonomy need not be considered a direct conflict with the notion of paternalism. The authors quoted a study reporting 70% of competent elderly patients wanted the family and physician to make decisions during end-of-life rather than it being based on previously stated wishes.[4] This finding may help us appreciate that non-autonomous decisions can be the expressed wishes of the individual, similar to the beliefs of many ethnic cultures. In order to bring these views to the forefront while respecting patient autonomy and family dynamics, healthcare workers must focus on open and balanced communication. When necessary, mediation through the involvement of neutral third parties can be a useful tool.[2]

  It is imperative to stress the importance of a detailed methodology and address the limitations of the study as it allows readers to recognize the extent to which the conclusions are drawn. It is equally important to appreciate the significance of cross-cultural awareness during end-of-life care. These allow for studies to be carried out with a sound methodology and also facilitates in implementing guidelines that account for the dimensions of patient interests, family wishes and cross-cultural values.

  References

  1. Bowman K, Ebrahim S. Understanding and respecting cultural differences in end-of-life care. In: Hawryluck L, Hodder R, ed. End-of- Life Communication in the ICU. Ottawa: CRI Critical Care Education Network, 2008.

  2. Bowman KW. Communication, negotiation and mediation: Dealing with conflict in end-of-life decisions. J Palliat Care 2000;16 Supplement:S17- S23.

  3. Rando TA. Loss and Anticipatory Grief. Toronto: Lexington Books, 1986.

  4. Puchalski CM, Zhong Z, Jacobs M.M., et al. Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to understand prognoses and preferences for outcomes and risks of treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr 2000;48(5 Supplement):S84-S90.

  Conflict of Interest:

  None declared

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  Conflict of Interest:
  None declared.

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