Advance Care Planning
Catherine Ferrier
This article originally appeared in Alzheimer’s Disease International’s World Alzheimer Report 2022 and is republished with permission. You can read the report at www.alzint.org/resource/world-alzheimer-report-2022.To view her 2022 Conference workshop on Advance Care Planning on Youtube, visit bit.ly/2022AdvanceCarePlanning
Advance care planning is a reflection and communication process with the goal of ensuring goal-concordant care near the end of life for people who lack decisional capacity. (Morrison RS, Meier DE, Arnold RM. What’s wrong with advance care planning? JAMA 2021; 326 (16):1575–1576.) It is grounded in the principle of autonomy, which is prominent in Western societies. The bioethical principles of Beauchamp and Childress (Beauchamp T Childress J. Principles of Biomedical Ethics [New York: Oxford University Press, 1979]), which are widely used in clinical settings, also include beneficence, non-maleficence, and justice, but many consider autonomy to have priority over all the others.
In many non-Western cultures, on the other hand, autonomous individual decision-making is a foreign concept. In Asia, for example, there is a convergence towards ethics based on duties and obligations, as opposed to Western rights-based bioethics. Autonomy may belong more to the family than to the individual, and the well-being of the whole family be considered when making a medical decision. (Tan Kiak Min M. Beyond a Western Bioethics in Asia and Its Implication on Autonomy. New Bioeth 2017; 23:2, 154–164.)
Advance care planning developed in response to the growth of technological medicine in the 20th century. Despite saving many lives, intensive care and other interventions led to the dilemma of patients being rescued from acute events only to remain gravely ill and comatose, dependent on such care to stay alive but incapable of deciding whether to continue it.
It makes intuitive sense to apply advance care planning also to situations of incipient or possible dementia, as decisions may be needed for several years after decision-making capacity is lost, regarding many aspects of life beyond medical care.
Early attempts to address this need involved creation of the “living will” or “advance directive,” documents in which patients list which medical interventions they would choose or would want to forgo, should they need care and not be able to express their wishes. The limits of this procedure soon became evident. (Fagerlin A, Schneider CE. Enough: the Failure of the Living Will. Hastings Cent Rep. Mar-Apr 2004; 34(2): 30–42.) More recent programs, without necessarily rejecting the advance directive, promote a more dynamic process of dialogue, supporting patients and their families to formulate goals of care as they move along the trajectory of a progressive illness. They combine reflection on healthcare goals and choices with naming and communicating with a surrogate decision-maker.
Research is, however, far from proving clear benefits from such programs, despite all the time and resources invested in developing and testing them. (Morrison RS. Advance Directives/Care Planning: Clear, Simple and Wrong. J Palliat Med 2020 Jul; 23 (7): 878–879) A 2020 scoping review of 69 studies could find no effect of advance care planning on goal-concordant care or on patient quality of life, despite success in “process” and “action” outcomes such as increased knowledge and completion of directives. (McMahan RD, Tellez I, Sudore RL. Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review. J Am Geriatr Soc, 2021; 69: 234–244.)
Why such a discrepancy? According to Morrison et al, “Treatment choices near the end of life are not simple, consistent, logical, linear, or predictable but are complex, uncertain, emotionally laden, and fluid. Patients’ preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden […] Surrogates find it difficult to extrapolate treatment decisions in the present from hypothetical discussions with patients that occurred in the past […], prior directives are often absent, poorly documented, or either so prescriptive or so vague that they cannot promote informed goal-concordant care.” (Morrison RS, Meier DE, Arnold RM. What’s wrong with advance care planning? JAMA 2021; 326 (16):1575–1576.)
Advance care planning relies on “precedent autonomy,” the notion that an autonomous decision in the present is perfectly applicable to an unknown future situation. This contradicts the doctrine of informed consent, which requires the provision of information on the diagnosis, the proposed investigations or treatments, their chances of success and harm in the present situation, and alternatives, before a decision is made.
There is increasing evidence in the field of psychology that individuals predict poorly their quality of life in hypothetical situations. (van den Bosch GJ, Roos RA, Otten R, Bockting C, Smulders YM. Are Patients Accurate Forecasters Of Their Emotional Response To Medical Conditions? A Scoping Review On Affective Forecasting. BMJ Open 2021; 11:e053370.) This has been attributed to a number of cognitive biases, including projection bias (projecting current preferences onto future situations), focalism (focusing on what gets worse, not what remains positive) and immune neglect (underestimation of one’s adaptive capacity). For this reason, we often observe a “response shift,” a change in preferences for care that occurs as a person adapts to and accepts advancing illness. (Sampson EL. Planning a Personalised Future With Dementia: “The Misleading Simplicity of Advance Directives.”Palliative Medicine 2013; 27(5) 387–388.)
What advice should we then offer to people who may develop dementia or are already in the early stages of the disease?
We cannot abandon the notion of planning, a sensible thing to do in any situation of advancing age and progressive disease. Plans must be made for housing, personal care, and financial management. For medical decisions, we can advise patients to choose a surrogate decision-maker, who must know the patient well, their values, hopes, and fears, and what gives them comfort. We can support and educate the surrogate to participate with confidence in medical decision-making, to help identify goals of care in the patient’s true present interest, as opposed to some hypothetical past wish, taking into account the person’s diagnoses and degree of frailty, which increases as dementia progresses. This approach is more compatible with many non-Western cultures, where family members are naturally involved in decision-making for an incapable parent or other relative.
We must teach health professionals how to discuss serious illness with patients and surrogates: what information to provide and in what way. It is not simple. “Like learning a surgical procedure, it requires specialised knowledge and skills, training with feedback from experts, and ongoing practice.” (Morrison RS. Advance Directives/Care Planning: Clear, Simple and Wrong. J Palliat Med 2020 Jul; 23 (7): 878–879.) Tools to teach such skills include The Conversation Project, Vital Talk, and others. Such tools need to be developed and applied further.
We must learn from all the efforts already made, without giving in to the “misleading simplicity of advance directives”. (Hertogh CM. The Misleading Simplicity Of Advance Directives. Int Psychogeriatr 2011; 23:4, 511–515.)