Retirement: Social Work Opportunity for End-of-Life Decision-Making Discussions with Individuals and Families
Overview
More advanced end-of-life decision-making planning is needed. Family members, who bear the brunt of difficult decision-making, frequently do so without adequate guidance. Social workers need to understand the prevalence, obstacles, and opportunities for intervention related to planning; as they are uniquely suited to guide such planning with individuals and families.
Abstract
Family members are often called upon to assist in end-of-life decision-making for loved ones, either as the “next in line” according to hospital policy or as a surrogate designated by the patient. In the event of either, it is often unclear to what extent family members are following the wishes of the patient (Winzelberg, G.S., Hanson, L.C., & Tulsky, J.A., 2005). Aside from potentially resulting in costly medical treatment not desired by the patient, such dilemmas can often have long-lasting effects on family members (Doukas, D.J., & Hardwig, J., 2003). With changing family structures, escalating health care costs, an aging population, and challenges to our long-term care system, this issue is growing in importance from both personal and public economic perspectives (Morrissey, 2005).
The Patient Self-Determination Act of 1990 and many state patient bills of rights recognize a patient’s right to direct his or her own care and thus require health care facilities to inform patients of their right to make advance directives; however, many individuals still do not complete such directives (Kahana, B., Dan, A., Kahana, E. & Kercher, K., 2004). While advanced directives do not guarantee that a patient’s wishes will be honored, they are a vital first step; without them (or some form of similar planning), family members and physicians are left to make decisions without input from the patient in the event of patient incapacity.
With self-determination as a primary tenet of the social work profession, social workers have a variety of essential roles in such situations, and thus, it is imperative for social workers to have a comprehensive understanding of end-of-life decision-making issues, planning, and stakeholders. Social workers may be called upon to educate, mediate, locate, facilitate, counsel, and/or otherwise assist with planning during these difficult times. Social workers’ unique set of skills well suits them for work with individuals and families in such planning. Ideally, social workers can be involved proactively at the education and planning stage, educating individuals about end-of-life decision-making and planning tools, as well as assisting in the completion of such plans. It is important for social workers to know who is/is not engaging in end-of-life planning and what factors influence such planning. This knowledge can enable social workers to better target educational, planning, and counseling interventions/programs.
Using data from the 2003-2007 Wisconsin Longitudinal Study data wave, this study examined the degree to which a sample of individuals ages 63 to 67 had made end of life preparations and who they involved. While the vast majority (83%) reported having made any end of life preparations, only 62 percent reported plans specifically regarding types of medical treatment. Just over half reported having a Durable Medical Power of Attorney (DMPOA; 53%), which overwhelmingly involved either a spouse (56%) or a child (42%), and having a Living Will (55%). Additionally, a large majority of those who had discussed plans with spouse/children did believe the spouse/child understood their wishes about medical preferences, either extremely well (78% spouse, 65% children) or somewhat well (21% spouse, 32% children).
Regression findings indicated being retired and having a higher level of education significantly increased one‘s odds of having made any end of life preparations, having medical treatment plans, having a DMPOA, and having a Living Will. Being female significantly increased one’s odds of having made medical treatment plans, and if have a DMPOA, to have named a child as the legal proxy (males are significantly more likely to have named their spouse). The psychological well-being indicators affecting the odds of having made end-of-life preparations included personal growth (made any plans, medical treatment plans, have living will); self-acceptance (made any plans, have DMPOA, have living will); and autonomy (medical treatment plans).
These findings suggest that retirement may be an opportune time to approach individuals about preparing for end-of-life decision-making. Social workers can take advantage of this life transition as a door to end-of-life planning discussions as retirees exit the workplace, or “re-enter” the community through volunteer and other senior adult programs. Findings also suggest that tailored interventions might be targeted toward individuals with lower educational attainment, to men, and to individuals with lower psychological well-being scores. Programming should be designed to further enhance the degree to which individuals and their proxies have a clear understanding about the individual’s preferences and wishes, encouraging early family/physician dialogue about patient care preferences/objectives. Future research is needed to ascertain social work knowledge, competence, and comfort level with end-of-life planning.