Planning A Dignified Death
Mike Magee

Decision making at the end of life is a critical challenge for the patients, families and physicians involved. (1) In the not-too-distant past, families and physicians were often complicit in hiding information from terminally ill patients. Studies show that this practice is much less frequent today. However, physicians in a 2001 study were found to understate the severity of a terminally ill patient’s prognosis 63 percent of the time, and there is general agreement that physicians and health institutions continue to overuse technology and under-use communication when dealing with terminally ill patients. (2)

To reinforce this point, an examination of hospital records of 164 patients with significant dementia and terminal metastatic cancer showed that nearly half of the patients received aggressive non-palliative treatments and a quarter received cardiopulmonary resuscitation. (3)

While it’s easy in retrospect to critique such behaviors, the reality is that managing the progression toward death is highly complex. The physician is often asked to bridge the chasm between life-saving and life-enhancing care. 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.

Considering all these, thecare team, patient, and family are expected to explore all curative options, provide clear and honest communications, invite family input, provide their best recommendations, and ultimately affirm and support a patient’s decision. (1)

Walking the road of terminal illness carries special burdens for all involved. For the patient and family, shock gives way to a complex analysis that often intersects with guilt, regret and anger. Fear must be managed and channeled, and loss and its implications for family and loved ones cannot be avoided. On top of this, there are multiple complex decisions that must be addressed within specific time constraints.

While all this is extremely difficult for patients and families, it’s also demanding of physicians and care teams. (4,5) The sheer complexity of individualizing and humanizing each passage is complicated by a heavy emotional burden that comes with accepting responsibility for the care of others. Caring professionals 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. Managing both physical and mental health and distinguishing between normal grief and clinical depression add to the challenge.

Finally, incorporating the unique culture and spiritual context that can help define the right course of action for each individual demands a special set of eyes and ears and an ability to reach out and touch.

Studies confirm that 85 percent of terminally ill patients desire as much information as they can get, good or bad. Prognostic information is the most important. Only 7 percent of terminally ill patients seek “good news” exclusively and only 8 percent want no details. (4,5)

When a diagnosis is first made, everyone’s focus is on life preservation. But a sharp decline, results of diagnostic studies, or an internal awareness can signal a transition and lead patients and families to recognize that death is approaching. Once acceptance arrives, end-of-life decision-making naturally follows. Denying 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 goals become quality of life and comfort. Physicians, nurses, hospice, family, and other caregivers can focus on assessing physical symptoms, psychological and spiritual needs, quality of support systems, estimation of prognosis, and defining a patient’s end-of-life goals. (2) 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?

One issue that often gets confused in the process of planning a death with dignity is hope. It is possible to die with hope, with self-control, and with dignity, but it requires some time and planning. Physician participation is critical. End-of-life care expert Dr. David Weissman offers this counsel: “Physicians are often reluctant to provide specific information largely out of fear of destroying hope …. Dying patients can still have hope for system control, of resolving personal relationships, and for a dignified death.” (1)

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. Recognizing when that time has arrived is a critical challenge for each of us.

References

1.Weissman DE. Decision making at a time of crisis near the end of life. JAMA. 2004;292:1738-1743.

2.Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med. 2001;134:1096-1105.

3.Ahronheim JC, Morrison RS, Baskin SA, et al. Treatment of the dying in the acute care hospital. Arch Intern Med. 1996;156:2094-2100.

4.McCahill LE, Krouse RS, Chu DZJ, et al. Decision making in palliative surgery. J Am Coll Surg. 2002;195:411-423.

5.Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt by deceit hurts more: communication in palliative care. Palliat Med. 2002;16:297-303.