WCOE: Patient Empowerment in Discussing End-of-Life Care

In Elana Gordon’s segment with NPR titled, “Hello, May I Help You Plan Your Final Months?” she reports on the work of Vital Decisions, a company that provides counseling via phone to beneficiaries of participating insurance companies in efforts to facilitate discussions about end-of-life care. Counselors often cold-call patients after attempts to reach them via postal mail have failed. During their sessions, they encourage patients to begin to consider their goals with the hope that over time the patient will feel empowered to communicate those goals with their physicians and family members.

For example, as described through partial transcripts that were released with the patient’s permission, a patient discloses that she has a malignant brain tumor and the medications she has been prescribed leave her dizzy and unable to drive. This symptom affects her quality of life as she is often left isolated in her home. The conversation results in the patient concluding that she is not able to have open conversations about seeking less aggressive treatments that could relieve this symptom because her son, who is often in the room for visits with her physician, insists that she “keep fighting.”

This conversation demonstrates how complex the end-of-life decision making process can be as patients are often not only considering their wishes, but also the wishes and feelings of those close to them. Every cancer patient entering this last stage of survivorship deserves to have the option of having these discussions facilitated by an unbiased professional to ensure their goals and objectives align with their care.

Mitchell Diatz, CEO of Vital Decisions states, “The goal of these conversations is to get what the patient wants. That may be the most aggressive care possible, or just the easing of symptoms. Studies show that when patients are able to have these conversations, and understand their various treatment options, they often choose to have less aggressive care.”

As we continue to assert, there are a number of factors that explain the disconnect between patient wishes and the care they receive, including reluctance of both physicians and patients to have difficult conversations about end-of-life, the fragmented health care system, the lack of coordinated care, and reimbursement policies that do not reward physicians’ time spent with patients.

NCCS’ popular resource, the Cancer Survival Toolbox, can help patients with this stage of survivorship.  The advocacy skills of information seeking, communication, problem solving, and negotiation take on special importance when making decisions about discontinuing treatment or how and where a patient wishes to die. The special topics module, Dying Well—The Final Stage of Survivorship, is designed to educate patients about their choices, provide resources, and inform them about what to expect during this last stage of survival.