End-of-Life Care takes a Village
– guest blog by Dr. David Quisenberry, Ph.D
A clear understanding of what patients, families, and health care practitioners view as important at the end of life is important to the success of improving care of dying patients. Moreover, it is important to maximize the special and unique skills and talents that each can best provide.
The results of a survey published in the Journal of the American Medical Association* provide some insight. Hundreds of seriously or terminally ill patients, bereaved family, physicians, and care providers (nurses, social workers, chaplains, and hospice volunteers) were asked to rank the importance of 44 attributes of quality at the end of life from their perspective and experience.
Twenty four items were universally supported by all groups, and are listed in order:
- Be kept clean
- Name my decision maker
- A nurse with whom I am comfortable
- Know what to expect about my physical condition
- Have someone who will listen to me
- Maintain my dignity
- Trust my physician
- Have my financial affairs in order
- Be free of pain
- Maintain my sense of humor
- Say goodbye to important people
- Be free of shortness of breath
- Be free of anxiety
- Physician whom I can discuss my fears
- Physician who knows me as a whole person
- Resolve unfinished business with my family and friends
- Have physical touch
- Physician who is comfortable discussing death and dying
- Share time with my close friends
- Believe my family is prepared for my death
- Feel prepared to die
- Presence of my family
- Treatment preferences in writing
- Not die alone
- Reminded of my personal accomplishments
- Receive care from my personal physician
While there are no surprises on this list, this evidence gives us confidence about what a good death includes. It takes us beyond our own experience and biases to improve end-of-life care by documenting the range of preferences of all stakeholders and professionals. It is important to note though, that quality care at the end of life is highly individual and can only be achieved through a process of shared decision making and clear communication about the specific values and preferences of each patient.
This study also highlights the need for dialogue during this challenging and uncertain process.
Eight items were consistently rated as very important to patients but were less important to physicians.
- Being mentally aware
- Having funeral arrangements planned
- Feeling that one’s life was complete
- Not being a burden to family
- Not being a burden to society
- Being able to help others
- Coming to peace with God
Physicians tend to focus on physical aspects, while patients and families tend to view the end of life with broader emotional, social and spiritual meaning, shaped by the individuality of lifetime experiences. While physicians’ biomedical focus is a natural outgrowth of medical care that emphasizes the physical self, physicians should recognize patients’ other needs and facilitate ways for them to be addressed.
Patients, families, and care providers each play a critical role in shaping the experience at the end of life, and need to have frequent conversations about quality end-of-life care, and what represents a good death.
* Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., McIntyre, L., & Tulsky, J. A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Jama, 284(19), 2476-2482.
Interested in more on this topic? Take a look at “Making Your Healthcare Wishes Known”.