Dealing with the end of life and the decisions that accompany it bring critical challenges for everyone involved-patients, families, friends and physicians. In fact, “managing” the progression toward death, particularly when a dire diagnosis has been made, can be a highly complex process. Each person involved is often challenged in a different way.
Communication is the first objective, and it should start with the physicians. In their role, physicians are often tasked to bridge the chasm between lifesaving and life-enhancing care; thus, they often struggle to balance hopefulness with truthfulness. Determining “how much information,” “within what space of time” and “with what degree of directness for this particular patient” requires a skillful commitment that matures with age and experience.
A physician’s guidance must be highly personalized and must consider prognosis, the risks and benefits of various interventions, the patient’s symptom burden, the timeline ahead, the age and stage of life of the patient, and the quality of the patient’s support system.
At the same time, it’s common for the patient and his or her loved ones to narrowly focus on life preservation, especially when a diagnosis is first made. They must also deal with shock, which can give way to a complex analysis that often intersects with guilt, regret and anger. Fear must be managed and channeled. This stage of confusion can last some time, but a sharp decline, results of diagnostic studies, or an internal awareness usually signals a transition and leads patients and loved ones to finally recognize and understand that death is approaching.
Once acceptance arrives, end-of-life decision-making naturally follows. Ongoing denial that death is approaching only compresses the timeline for these decisions, adds anxiety, and undermines the sense of control over one’s own destiny.
With acceptance, the ultimate objectives become quality of life and comfort for the remainder of days, weeks or months. Physicians, hospice, family and other caregivers can focus on assessing the patient’s physical symptoms, psychological and spiritual needs, and defining end-of-life goals. How important might it be for a patient to attend a granddaughter’s wedding or see one last Christmas, and are these realistic goals to pursue?
In order to plan a death with dignity, we need to acknowledge death as a part of life-an experience to be embraced rather than ignored when the time comes. Will you be ready?
Mike Magee, M.D., is a Senior Fellow in the Humanities to the World Medical Association, director of the Pfizer Medical Humanities Initiative, and host of the weekly Web cast “Health Politics with Dr. Mike Magee.”