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There has been increasing recognition that surrogate decision-makers, often family members and friends, face many challenges when assisting incapable seniors. The literature to date has focused primarily on decisions about medical interventions or the withholding of treatment. More recently, there has also been interest in issues related to substitute consent for seniors’ participation in research. Two basic principles govern decision-making on behalf of incapable individuals (1). The primary standard is substituted judgement. Substituted judgement respects patient autonomy and asks the surrogate to make decisions according to what the patient would have decided when he or she was capable. The secondary standard is that of best interests, which obliges the surrogate to consider the patient’s well-being. The surrogate is asked to consider what is best for the patient, while taking into account the patient’s values and beliefs. Many problems arise when trying to translate these principles into actual decision-making, and there is evidence suggesting that the process of surrogate decision-making is often less than ideal. Few individuals have actually discussed or communicated their treatment wishes to their proxies (2). Some proxies make different decisions for others than they would make for themselves (2), or they make decisions that contradict the patient’s original intentions. Proxies also report not receiving necessary support from the health care team when having to make a difficult decision on someone’s behalf (3). Many factors influence the choices made by surrogates, including the cognitive status of the patient, the patient’s perceived quality of life, the caregiver burden (4), and the decision-making standard (that is, substituted judgement or best-interest standard). Family members may be influenced by emotional responses when acting as decision makers, and they may find it difficult to distinguish the patient’s interests from their own or to ignore financial concerns (5). There is also evidence suggesting that surrogates may be less concerned about the principles guiding clinicians and ethicists, such as autonomy and beneficence (6). Surrogates are increasingly being called on to make personal care decisions for incapable individuals. Decisions include arranging assistance for incapable seniors in their own home or arranging placement in a nursing home. Much less is known about the difficulties inherent in this type of surrogate decision making. These decisions often arise in geriatric psychiatry, especially in the context of dementia care. This paper presents a case vignette that highlights these difficult issues and further discusses the challenges and issues inherent in similar scenarios. Case VignetteMrs B is an 83-year-old widow who lives in an apartment alone. She was referred for psychiatric assessment when it became clear she was having difficulties managing her routine activities. She was not able to keep the apartment clean, prepare meals, or care for herself. She was found to be suffering from a progressive dementia, and it was believed that she needed extra help in the community and might ultimately require placement in a nursing home. Mrs B was incapable of making the decision to move. To arrange for the in-home services and to complete the applications for nursing homes, it was necessary to consult her granddaughter, who had a valid power of attorney for personal care. The granddaughter did not feel she could make these decisions, stating that she had not understood she might be asked to do this when accepting the role of personal care attorney. She did not feel she could overrule her grandmother’s then-stated wishes not to move and not to accept any help. Despite being informed of her grandmother’s condition and of her inability to make necessary decisions, the granddaughter was uncomfortable with the situation and needed significant support from the multidisciplinary team. DiscussionIn this case, the surrogate felt unprepared to make decisions on behalf of her grandmother. She had little understanding of her role and was not given previous directions by Mrs B to assist her in decision making. This discussion focuses on what clinicians and researchers might do to help surrogate decision-makers and to promote understanding of these issues. Advanced Planning There is clearly a role for clinicians and legal and financial advisors to assist individuals in thinking about such matters, to encourage them to discuss these issues with their families, and to plan for the future. Although dementia care guidelines emphasize the need for advanced planning and recommend that persons with dementia think about the future (7), it is not clear that the necessary discussions are taking place. Being informed about their decision-making role when drafting these documents might make the surrogates’ subsequent task easier. Honest discussion about future preferences when drafting the power of attorney (or any time thereafter) may provide surrogates with guidance in future decision-making. Identification of Problems Assisting Caregivers in Decision-Making Few caregivers actively plan for the institutionalization of their loved ones and repeatedly report that this decision is one of the hardest to make. Studies show that caregivers’ personal and social resources are factors affecting their perceptions of nursing home placement (9). Caregivers with limited resources report the most difficulties, viewing family and friends as less helpful, thereby complicating attempts to aid them during this difficult time. Lewine and Zuckerman suggest that families need education, skills acquisition, and open communication from professionals to deal with these circumstances. They encourage treatment teams to establish partnerships with families (10). This is particularly important for family members who are making decisions on behalf of another member, as shown in the above-described case. Decision-aids may be a helpful tool for treatment teams, and several innovative methods have been reported. Baergen suggests that a value history may provide some assistance to surrogates (11). Albert and colleagues developed a quality of life measure for dementia patients (12). This measure captured a great range of variation in the experience of dementia; it might be useful to clinicians helping families to assess patients’ quality of life before choosing appropriate interventions. Koch pointed out that surrogates make patient care decisions from a different perspective from that endorsed by medical professionals. He described a case study in which a caregiver sought advice online from women like his mother, hoping they could provide him with guidance on the treatment decisions he had to make on his mother’s behalf (6). Smucker and others reported that the medical treatment preferences of elderly patients in 9 hypothetical illness scenerios (including Alzheimer’s disease) were similar to the surrogates’ choices (13). The authors proposed collecting data from patients or individuals who are facing the choices in question, such as those with early dementia. This information could be very helpful for surrogates. Lewis and others describe a decision-making guide designed to assist caregivers who are facing difficult decisions (14). The Options, Outcomes, Values, and Likelihoods guide is structured as a grid and can be used by caregivers making decisions about several personal care issues. It allows caregivers to discuss and document different options, potential outcomes, important values respected by each option, and the probability of each outcome occurring. Future Research Directions Diagnosis of dementia raises additional dilemmas and research questions. Theorists are struggling with new approaches to the ethical issues facing individuals with dementia and their families. Tom Kitwood stressed the ethic of context, emphasizing the need to understand individuals with dementia in their own particular situations and to consider the influence of relationships on their well-being (15). Others have stressed listening to what persons with dementia have to say (16) and incorporating everyday ethics in the approach to ethical issues within this population (17). These approaches focus on personal care decisions that directly impact the day-to-day life of those living with a dementing illness and encourage individuals with dementia to be involved in the decision-making process. ConclusionThe discussion concerning surrogate decision making must be broadened beyond medical interventions to include the perspective of day-to-day living. Issues arising in geriatric psychiatry highlight the challenges inherent in personal care decision making and the needs of substitute decision makers. Further exploration and research into these issues is required to allow professionals to support families in developing effective partnerships to assist seniors. References1. The New York State Task Force on Life and the Law. When others must choose: deciding for patients without capacity. Albany (NY): Health Research Inc; 1992. Guidance for surrogate decisions; p 103–15. 2. Shidler S. Participation of chronically ill older adults in their life-prolonging treatment decisions: rights and opportunity. Can J Aging 1998;1:1–23 3. Mitchell SL, Berkowitz RE, Lawson FME, Lipsitz LA. A cross-national survey of tube-feeding decisions in cognitively impaired older persons. J Am Geriatr Soc 2000;48:391–7. 4. Mezey M, Kluger M, Maislin G and Mittleman M. Life-sustaining treatment decisions by spouses of patients with Alzheimer’s disease. J Am Geriatr Soc 1996;44:144–50. 5. Bopp J, Coleson RE. A critique of family members as proxy decisionmakers without legal limits. Issues Law Med 1996;12:133–65. 6. Koch, T. Principles and purpose: the patient surrogate’s perspective and role. Camb Q Health Ethics 1997;6:461–9. 7. American Psychiatric Association. Practice guideline for the treatment of patients with Alzheimer’s disease and other dementias of late life Am J Psychiatry 1997;154(Suppl 5). 8. Penrod J, Dellasega C. Caregivers’ experiences in making placement decisions. West J Nurs Res 1998;20:706–32. 9. Gaugler JE, Pearlin LI, Leitsch SA, Davey A. Relinquishing in-home dementia care: difficulties and perceived helpfulness during the nursing home transition. American Journal of Alzheimer’s Disease and Other Dementias 2001;16:32–42. 10. Levine D, Zuckerman C. The trouble with families: toward an ethic of accommodation. Ann Intern Med 1999;130:148–52. 11. Baergen R. Surrogates and uncertainty. J Clin Ethics 1995;6:372–7. 12. Albert SM, Del Castillo-Castaneda, Sano M, Jacobs DM, Marder K, Bell K, and others. Quality of life in patients with Alzheimer’s diseases as reported by patient proxies. J Am Geriatr Soc 1996;44:1342–7. 13. Smucker WD, Houts RM, Danks JH, Ditto PH, Fagerlin A, Coppola M. Modal preferences predict elderly patients’ life-sustaining treatment choices as well as patients’ chosen surrogates do. Med Decis Making 2000;20:271–80. 14. Lewis M, Hepburn K, Corcoran-Perry S, Narayan S, Lally R. Options, outcomes, values, likelihoods decision-making guide for patients and their families. J Gerontol Nurs 1999;25(12):19–25. 15. Kitwood T. Toward a theory of dementia care: ethics and interaction. J Clin Ethics 1998;9:23–34. 16. Sabat SR. Voices of Alzheimer’s disease sufferers: a call for treatment based on personhood. J Clin Ethics 1998;9:35–48. 17. Lyman KA. Living with Alzheimer’s disease: the creation of meaning among persons with dementia. J Clin Ethics 1998;9:49–57. Author(s)Manuscript received and accepted January 2004. 1. Associate Professor, Department of Psychiatry, Joint Centre for Bioethics, University of Toronto, Toronto, Ontario. Address for correspondence: Dr C Cohen, Sunnybrook and Women’s College Health Sciences Centre, Room F307, 2075 Bayview Avenue, Toronto, ON M4N 3M5 e-mail: carole.cohen@sw.ca
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