Bioethics for clinicians: 6. Advance care planning

Peter A. Singer, MD, MPH, FRCPC; Gerald Robertson, LLB, LLM; David J. Roy, STL, PhL, DrTheol

Canadian Medical Association Journal 1996; 155: 1689-1692

[résumé]

Dr. Singer is Director of the University of Toronto Joint Centre for Bioethics, Associate Professor of Medicine at the University of Toronto, and Staff Physician with The Toronto Hospital, Toronto, Ont. Mr. Robertson is Professor of Law at the University of Alberta, Edmonton, Alta. Dr. Roy is Director of the Centre for Bioethics, Clinical Research Institute of Montreal, Research Professor at the Faculty of Medicine, Université de Montréal, and Director and Coordinator of the Quebec Research Network in Clinical Ethics, Fonds de la recherche en santé du Québec, Montreal, Que.

Dr. Singer's work is supported by the National Health Research and Development Program through a National Health Research Scholar Award. The views expressed here are the authors' and not necessarily those of their supporting groups or employers.

Paper reprints may be obtained from: Dr. Peter A. Singer (series editor), University of Toronto Joint Centre for Bioethics, 88 College St., Toronto ON M5G 1L4; fax 416 978-1911; peter.singer@utoronto.ca

© 1996 Canadian Medical Association (text and abstract/résumé)

Abstract

Advance care planning is a process whereby a patient, in consultation with health care providers, family members and important others, makes decisions about his or her future health care. Grounded in the ethical principle of autonomy and the legal doctrine of consent, advance care planning helps to ensure that the norm of consent is respected should the patient become incapable of participating in treatment decisions. Physicians can play an important role by informing patients about advance care planning directing them to appropriate resources, counselling them as they engage in advance care planning and helping them to tailor advance directives to their prognosis.

Résumé

La planification des soins est un processus dans le cadre duquel un patient, en consultation avec des fournisseurs de soins de santé, des membres de sa famille et d'autres personnes importantes, prend des décisions sur ses soins de santé à venir. Fondée sur les principes éthiques de l'autonomie et sur la doctrine légale du consentement, la planification des soins aide à assurer que l'on respectera la norme du consentement si le patient devient incapable de participer à la prise de décisions relatives au traitement. Les médecins peuvent jouer un rôle important en informant les patients au sujet de la planification des soins, en les orientant vers les ressources appropriées, en les conseillant au moment où ils entreprennent la planification des soins et en les aidant à formuler des directives préalables en fonction de leur pronostic.

Mrs. Q is 63 years old and has no significant history of illness. She presents for a routine visit to her family physician. She recently read a newspaper article about a new law on living wills and wants to obtain some advice about them.

Mr. R is a 40-year-old man who was diagnosed 2 years ago with HIV infection. He presents to an internist with symptoms of early dementia. The internist considers what Mr. R. should be told about advance directives. What is advance care planning? Advance care planning is a process whereby a patient, in consultation with health care providers, family members and important others, makes decisions about his or her future health care.[1] This planning may involve the preparation of a written advance directive.[2,3] Completed by the patient when he or she is capable, the advance directive is invoked in the event that the patient becomes incapable. (The question of capacity is discussed in the third article in this series [see sidebar].) Advance directives indicate whom the patient would want to make treatment decisions on his or her behalf and what interventions the patient would or would not want in various situations. Why is advance care planning important? Ethics

Advance care planning helps to ensure that the norm of consent is respected when sick people are no longer able to discuss their treatment options with physicians and thereby exercise control over the course of their care. This norm is grounded in the principle of self-determination and respect for autonomy, a classic expression of which is Justice Benjamin Cardozo's statement in 1914 that "Every human being of adult years and sound mind has the right to determine what shall be done with his own body."[4]

Although the principle of self-determination places high value on individual liberty, the usefulness of advance care planning is not limited to those whose world-view valorizes individualism. Advance care planning also rests on the principle of respect for persons, and this respect must extend to those whose cultural values emphasize the interdependence of human beings and the well-being of the family or community as a whole. Advance care planning recognizes that sick people suffer a loss of dignity when they cannot command respect for their considered and cherished intentions and that such intentions may be shaped by cultural values.

Advance care planning cannot avert all ethical uncertainties and conflicts in clinical decision-making. Some patients change their views as time passes, and others request life-prolonging interventions that subsequently prove to be unrealistic. Moreover, substitute decision-makers are not always sure that a patient's situation is equivalent to that described in an advance directive.

Law

British Columbia,[5] Alberta,[6] Manitoba,[7] Ontario,[8,9] Quebec,[10] Nova Scotia,[11] Prince Edward Island[12] and Newfoundland[13] have legislation supporting the use of advance directives. (In British Columbia, Alberta and Prince Edward Island, this law has not yet been proclaimed.) An advance directive is referred to in law by various names: "representation agreement" (British Columbia), "personal directive" (Alberta), "health care directive" (Manitoba), "power of attorney for personal care" (Ontario), "mandate given in anticipation of . . . incapacity" (Quebec), "consent agreement" (Nova Scotia) and "advance health care directive" (Newfoundland). The legislation varies from province to province with respect to the scope of advance directives, who can act as proxy for the patient, requirements for witnessing the advance directive, procedures for activating the advance directive, and so on. Physicians should familiarize themselves with the legislation in their province or territory. Even when there is no legislation, legal decisions such as that made in Malette v. Shulman and other cases[14,15] suggest that advance directives may still be legally valid.

Policy

The CMA supports the use of advance directives,[16] and some hospitals and long-term care facilities have policies regarding advance directives.[17,18]

Empirical studies

Key findings from empirical studies can be summarized as follows.

  • Advance directives are generally viewed in a positive light by physicians and patients.[19–29] For example, 85% of family physicians in Ontario favoured the use of advance directives,[30] and 62% of medical outpatients wanted to discuss their preferences with regard to life-sustaining treatment.[31]

  • Only 12% of Ontarians and 10% of Canadians have completed an advance directive form.[32,33]

  • People change their preferences over time with respect to life-sustaining treatment.[34,35]

  • Cultural values play an important role in advance care planning.[36,37]

  • The implementation of programs to encourage advance care planning is associated with increased use of advance directives.[38–47]

  • Few studies have been done on substitute decision-making for incapable persons with or without advance care plans and advance directives.[48,49]

  • The effect of advance directives on health care costs has been the subject of debate.[50–54] Findings from the largest and most recent randomized trial do not support the hypothesis that the use of advance directives decreases health care utilization or costs.[55]
How should I approach advance care planning in practice? The previous article in this series addressed the role of advance directives in substitute decision-making for incapable patients [see sidebar]. In this article we focus on the process of planning care with capable patients.

The main goal of advance care planning is "to ensure that clinical care is shaped by the patient's preferences when the patient is unable to participate in decision making."56 Moreover, it has recently been recognized that such planning is a social process that requires communication among all concerned; it is not simply the act of completing an advance directive form.[1,57]

The role of the physician in advance care planning is still being defined. Some authors believe that the physician's role is central. For example, Emanuel and associates[57] describe a framework for advance care planning within the context of the physician–patient relationship. This conception does not take into account the fact that many Canadians complete advance directives with the assistance of a lawyer in the context of estate counselling, or that over 2 million people requested Power of Attorney for Personal Care forms from the Office of the Public Guardian and Trustee after the Substitute Decisions Act was passed in Ontario. A broader view of advance care planning suggests that it occurs outside the context of the physician–patient relationship. Some preliminary research findings support this view.[58]

Understanding advance care planning in a broader social context calls for a re-evaluation of the part that physicians and other health care providers have to play. If advance care planning occurs within families, for example, the physician should support that planning rather than direct it. The physician's primary role is that of educator. Physicians who raise the issue of advance care planning with patients who are unaware of their rights with respect to advance directives perform a valuable service. Patients who request assistance with advance care planning should first be directed to relevant information sources; these include documents provided by provincial governments, self-help publications such as Let Me Decide[59] and the Living Will booklet and video available through the University of Toronto Joint Centre for Bioethics.

Once a patient has obtained general information about advance care planning, the physician can help him or her to tailor an advance directive to the particular health situation of concern. Compared with the "generic" approach of preprinted advance directive forms, a "disease-specific" approach is less hypothetical and can be based on more precise prognostic information.60 For instance, a physician caring for a patient with severe chronic obstructive pulmonary disease could draw the patient's attention to the issue of intubation and ventilation in the event of respiratory failure.

The physician can also ensure that the patient has correctly interpreted the information contained in a preprinted advance directive and is capable of completing it.[61,62]

Lawyers can make an important contribution by ensuring that an advance directive conforms to provincial legislation and is consistent with the patient's overall planning with regard to future incapacity and death. (This may involve other matters such as designating power of attorney for finances and preparing an estate will.)

Research conducted at the University of Toronto Joint Centre for Bioethics has found that counselling is a valuable component of advance care planning. Whether such counselling is best performed by a physician, lawyer, nurse, social worker or other educator is unknown.

Physicians should suggest that patients review their advance care plans when their health status changes. This will help to ensure that the patient's preferences as expressed in an advance directive are current and likely to apply to future treatment decisions.

When the patient becomes incapable and his or her advance directive takes effect, the physician will seek consent to proceed with the proposed treatment plan from the substitute decision-maker appointed in the advance directive, as discussed in the previous article in this series. Cases revisited Mrs. Q is requesting information about advance care planning. Her physician should refer her to one of the available information sources and encourage her to begin the process of advance care planning with her preferred substitute decision-maker. After a period of time, Mrs. Q and her substitute might together meet with the physician. At this meeting, the physician can review Mrs. Q's treatment preferences to ensure that she has understood the information in the advance directive form and is capable of completing it. If Mrs. Q is concerned about the legal validity of her advance directive, the physician might recommend that she consult a lawyer. If her health situation changes, the physician should recommend that Mrs. Q update her advance directive.

Mr. R, unfortunately, may soon be incapable of making health care decisions. The physician should raise the subject of advance care planning with him in a sensitive manner and follow the same steps as described for Mrs. Q. However, in the case of Mr. R, the physician will have to pay particular attention to the issue of capacity. This situation also represents an opportunity for the physician to tailor the information considered by Mr. R in advance care planning to the likely future: progressive cognitive deterioration.

References

  1. Teno JM, Nelson HL, Lynn J. Advance care planning: priorities for ethical and empirical research. Hastings Cent Rep 1994;Nov-Dec:32S-36S.
  2. Advance Directives Seminar Group, Centre for Bioethics, University of Toronto. Advance directives: Are they an advance? CMAJ 1992;146:127-34.
  3. Emanuel L. Advance directives: What have we learned so far? J Clin Ethics 1993;4:8-15.
  4. Cited in Faden R, Beauchamp TL, King NMP. A history and theory of informed consent. New York: Oxford University Press, 1986:123.
  5. Representation Agreement Act, SBC 1993, c 67.
  6. Personal Directives Act, SA 1996, c P-4.03.
  7. Health Care Directives and Consequential Amendments Act, SM 1992, c 33.
  8. Health Care Consent Act, SO 1996, c 31.
  9. Substitute Decisions Act, SO 1992, c 30, am by 1994, c 27 ss 43(2), 62; 1996, c2 ss 3-60.
  10. Art 12 CCQ.
  11. Medical Consent Act, RSNS 1989 c 279.
  12. Consent to Treatment and Health Care Directives Act, Stats PEI 1996, c 10.
  13. Advanced Health Care Directives Act, SN 1995, c A-4.1.
  14. Malette v. Shulman [1990], 67 DLR (4th) (Ont CA).
  15. Airedale NHS Trust v. Bland [1993] AC 789 (HL).
  16. Canadian Medical Association. Advance directives for resuscitation and other life-saving or sustaining measures [policy summary]. CMAJ 1992;146:1072A.
  17. Rasooly I, Lavery JV, Urowitz S, Choudhry S, Seeman N, Meslin EM, et al. Hospital policies on life-sustaining treatments and advance directives in Canada. CMAJ 1994;150:1265-70.
  18. Choudhry NK, Ma J, Rasooly I, Singer PA. Long-term care facility policies on life-sustaining treatments and advance directives. J Am Geriatr Soc 1994;42:1150-3.
  19. Kelner MJ, Bourgeault IL. Patient control over dying: responses of health care professionals. Soc Sci Med 1993;36:757-65.
  20. Lo B, McLeod GA, Saika G. Patient attitudes to discussing life-sustaining treatment. Arch Intern Med 1986;146:1613-5.
  21. Shmerling RH, Bedell SE, Lilienfeld A, Delbanco TL. Discussing cardiopulmonary resuscitation: a study of elderly outpatients. J Gen Intern Med 1988;3:317-21.
  22. Frankl D, Oye RK, Bellamy PE. Attitudes of hospitalized patients toward life-support: a survey of 200 medical inpatients. Am J Med 1989;86:645-8.
  23. Teno J, Fleishman J, Brock DW, Mor V. The use of formal prior directives among patients with HIV-related disease. J Gen Intern Med 1990;5:490-4.
  24. Stolman CJ, Gregory JJ, Dunn D, Levine JL. Evaluation of patient, physician, nurse and family attitudes toward do not resuscitate orders. Arch Intern Med 1990;150:653-8.
  25. Gamble ER, McDonald PJ, Lichstein PR. Knowledge, attitudes and behaviour of elderly persons regarding living wills. Arch Intern Med 1991;151:277-80.
  26. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care: a case for greater use. N Engl J Med 1991;324:889-95.
  27. Joos SK, Reuler JB, Powell JL, Hickam DH. Outpatients' attitudes and understanding regarding living wills. J Gen Intern Med 1993;8:259-63.
  28. Pfeifer MP, Sidorov JE, Smith AC, Boero JF, Evans AT, Settle MB, for the EOL [End of Life] Study Group. The discussion of end-of-life medical care by primary care patients and their physicians: a multicenter study using structured qualitative interviews. J Gen Intern Med 1994;9:82-8.
  29. Molloy DW, Guyatt G, Elemayheu E, McIlroy WE. Treatment preferences, attitudes toward advance directives and concerns about health care. Humane Med 1991;7:285-90.
  30. Hughes DL, Singer PA. Family physicians' attitudes toward advance directives. CMAJ 1992;146:1937-44.
  31. Sam M, Singer PA. Canadian outpatients and advance directives: poor knowledge, little experience, but positive attitudes. CMAJ 1993;148:1497-502.
  32. Singer PA, Choudhry S, Armstrong J. Public opinion regarding consent to treatment. J Am Geriatr Soc 1993;41:112-6.
  33. Singer PA, Choudhry S, Armstrong J, Meslin EM, Lowy FH. Public opinion regarding end of life decisions: influence of prognosis, practice and process. Soc Sci Med 1995;41:1517-21.
  34. Danis M, Garrett J, Harris R, Patrick DL. Stability of choices about life-sustaining treatment. Ann Intern Med 1994;120:567-73.
  35. Emanuel LL, Emanuel EJ, Stoeckle JD, Hummel LR, Barry MJ. Advance directives: stability of patients' treatment choices. Arch Intern Med 1994;154:209-17.
  36. Caralis PV, Davis B, Wright K, Marcial E. The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics 1994;4:155-65.
  37. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes towards patient autonomy. JAMA 1995;274:820-5.
  38. Sachs GA, Stocking CB, Miles SH. Empowerment of the older patient? A randomized controlled trial to increase discussion and use of advance directives. J Am Geriatr Soc 1992;40:269-73.
  39. High DM. Advance directives and the elderly: a study of intervention strategies to increase use. Gerontologist 1993;33:342-9.
  40. Rubin SM, Strull WM, Fialkow MF, Weiss SJ, Lo B. Increasing the completion of the durable power of attorney for health care: a randomized, controlled trial. JAMA 1994;271:209-12.
  41. Hare J, Nelson C. Will outpatients complete living wills? A comparison of two interventions. J Gen Intern Med 1991;6:41-6.
  42. Emanuel EJ, Weinberg DS, Gonin R, Hummel LR, Emanuel LL. How well is the Patient Self-Determination Act working? An early assessment. Am J Med 1993;95:619-28.
  43. Silverman HJ, Tuma P, Schaeffer MH, Singh B. Implementation of the Patient Self-Determination Act in a hospital setting. Arch Intern Med 1995;155:502-10.
  44. Markson LJ, Fanale J, Steel K, Kern D, Annas G. Implementing advance directives in the primary care setting. Arch Intern Med 1994;154:2321-7.
  45. Luptak MK, Boult C. A method for increasing elders' use of advance directives. Gerontologist 1994;34:409-12.
  46. Cohen-Mansfield J, Rabinovich BA, Lipson S, Fein A, Gerber B, Weisman S, et al. The decision to execute a durable power of attorney for health care and preferences regarding the utilization of life-sustaining treatments in nursing home residents. Arch Intern Med 1991;151:298-4.
  47. Cohen-Mansfield J, Droge JA, Billig N. The utilization of the durable power of attorney for health care among hospitalized elderly patients. J Am Geriatr Soc 1991;39:1174-8.
  48. Danis M, Southerland LI, Garrett JM, Smith JL, Hielema F, Pickard CG, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991;324:882-8.
  49. Morrison RS, Olson E, Mertz KR, Meier DE. The inaccessibility of advance directives on transfer from ambulatory to acute care settings. JAMA 1995;274:478-82.
  50. Schneiderman LJ, Kronick R, Kaplan RM, Anderson JP, Langer RD. Effects of offering advance directives on medical treatments and costs. Ann Intern Med 1992;117:599-606.
  51. Molloy DW, Guyatt G. A comprehensive health care directive in a home for the aged. CMAJ 1991;145:307-11.
  52. Molloy DW, Urbanyi M, Horsman JR, Guyatt GH, Bedard M. Two years' experience with a comprehensive health care directive in a home for the aged. Ann R Coll Physician Surg Can 1992;25:433-6.
  53. Chambers CV, Diamond JJ, Perkel RL, Lasch LA. Relationship of advance directives to hospital charges in a medicare population. Arch Intern Med 1994;154:541-7.
  54. Teno JM, Lynn J, Phillips RS, Murphy D, Youngner SJ, Bellamy P. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? J Clin Ethics 1994;5:23-30.
  55. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT). JAMA 1995;274:1591-8.
  56. Teno JM, Nelson HL, Lynn J. Advance care planning: priorities for ethical and empirical research. Hastings Cent Rep. 1994; Nov-Dec:33S.
  57. Emanuel LL, Danis M, Pearlman RA, Singer PA. Advance care planning as a process: Structuring the discussions in practice. J Am Geriatr Soc 1995;43:440-6.
  58. Singer PA, Martin DK, Lavery JV, Thiel EC, Kelner M, Mendelssohn DC. Advance directives in dialysis. J Gen Intern Med 1995;10(suppl):118.
  59. Molloy W, Mepham V. Let me decide: the health care directive that speaks for you when you can't. Toronto: Penguin Books, 1992.
  60. Singer PA. Disease-specific advance directives. Lancet 1994;344:594-6.
  61. Silberfeld M, Nash C, Singer PA. Capacity to complete an advance directive. J Am Geriatr Soc 1993;41:1141-3.
  62. Molloy DW, Silberfeld M, Darzins P, Guyatt GH, Singer PA, Rush B, et al. Measuring Capacity to Complete an Advance Directive. J Am Geriatr Soc 1996;44:660-4.