Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice
- 459 Downloads
Adults who are incapacitated and alone, having no surrogates, may be known as “unbefriended.” Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for “public guardianship” or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the consequences of inadequacies on the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: (1) work to restore capacity; (2) find previously unknown surrogates; (3) work with agencies to obtain surrogates; and (4) access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient’s values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population.
KeywordsGuardianship Surrogates Ethics Healthcare providers Incapacitated adults Unbefriended
This project was funded by the Guardianship Community Trust. In addition, this material is the result of work supported with resources and the use of facilities at the Boston Veterans Administration Healthcare System. We thank the individuals who participated in our research interviews and who each gave generously of their time to speak with us about this important issue. Their commitment to the clients they serve was palpable and sincere.
- American Bar Association/American Psychological Association Assessment of Capacity in Older Adults Project Working Group. (2008). Assessment of older adults with diminished capacity: A handbook for psychologists. Washington, DC: American Bar Association and American Psychological Association.Google Scholar
- Doukas, D. J., & McCullough, L. B. (1991). The values history: The evaluation of the patient’s values and advance directives. The Journal of Family Practice, 32, 145–153.Google Scholar
- Isaacs, E. D., & Brody, R. V. (2010). The unbefriended adult patient: The San Francisco General Hospital approach to ethical dilemmas. San Francisco Medical Journal, 83, 25–26.Google Scholar
- Karp, N., & Wood, E. (2003). Incapaciated and alone: Medical decision-making for the unbefriended elderly. Washington DC: American Bar Association Commission on Law and Aging.Google Scholar
- Moye, J., Wood, E., Teaster, P., Catlin, C., & Kwak, J. (2016). Examining the need for a public guardian in Massachusetts: Phase 1. Andover: Massachusetts Guardianship Policy Institute.Google Scholar
- Pope, T. M., & Sellers, T. (2012). Legal briefing. The unbefriended: Making healthcare decisions for patients without surrogates (Part 2). The Journal of Clinical Ethics, 23, 177–192.Google Scholar
- Sabatino, C. P. (1991/1992). Death in the legislature: Inventing legal tools for autonomy. NYU Review of Law and Social Change, 19, 309–399.Google Scholar
- Schmidt, W. C., Miller, K. S., Bell, W. G., & New, B. E. (1981). Public guardianship and the elderly. Cambridge: Balinger.Google Scholar
- Teaster, P. B., Wood, E., Schmidt, W. C., Lawrence, S. A., & Mendionodo, M. (2010). Public guardianship after 25 years: In the best interest of incapacitated people? Santa Barbara, CA: Praeger Publishing Company.Google Scholar
- Teaster, P. B., Wood, E. F., Lawrence, W. F., & Schmidt, W. C. (2007). Wards of the state: A national study of public guardianship. Stetson Law Review, 37, 193–201.Google Scholar