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A Good Death: Not Just an Abstract Concept

From the Hospice of Boston Inc/Hospice of Greater Brockton and Palliative and Supportive Medicine Program, Harvard Vanguard Medical Associates, Boston, MA.

Address reprint requests to Gail Gazelle, MD, Harvard Vanguard Medical Associates, 133 Brookline Ave, Suite 6115, Boston, MA 02215; email: gail_gazelle{at}vmed.org.

THEY WERE starting to wonder. Another three patients had died, and once again I had asked for the details. Had Mr H, the 55-year-old Vietnam veteran with the eroding neck mass, bled into a major artery? Did Mrs C suffocate from a final episode of shortness of breath? And Mr N, the young man with the brain tumor, had he ended up with uncontrollable seizures?

It had been 3 months since I became the medical director of this outpatient hospice, and the staff had come to expect my questions. Each time, the nurse who had attended the patient gave some variation of the answer, "Oh, they just died."

They "just died?" I thought. What could that possibly mean? Were these people so inured to death that they didn’t even notice the distress the patients endured in their last moments?

It came to a head. I knew they were thinking I was macabre, wanting to know the dark details of each person’s trajectory into death. So when I aired my disbelief, they breathed a sigh and we talked. Again, the nurses told me they really did "just die." Patient after patient just died. For the almost 20 years the hospice had been in existence, the chief nurse could count on two hands the number of patients who had suffered in their last hours and minutes. There were a few who had bled out. Most of these were expected, and the nurses had kept red towels at the home and tended to the patients to spare the families the anguishing sight. There were two they could remember with horrendous delirium, not controlled by any combination of medications. And, yes, there were five or six with refractory pain despite neuroablative procedures and high-dose epidural opioids. But for the approximately 4,000 other patients, they simply died.

We live in a society that chooses to hope that death can somehow be averted. As physicians, we suffer from the same death phobia, often offering dying patients therapies we know to be ineffective.¹ Our medical education and texts include little information about the skills needed to treat symptoms common at the end of life,^2,3 and few residency programs require hospice rotations. We are also taught throughout our training that no matter how dire the circumstance, we cannot take away a patient’s hope. As a result, the psychologic and spiritual suffering that patients experience, often expressed as intractable physical pain, remains untreated. We are not taught that, for most patients who are in the final phase of an incurable disease, hope for cure or even for increased longevity will be proven tragically false. Dying patients and their families need our help in redirecting hope toward living without undue suffering, having time with loved ones, and preserving some sense of control and dignity. These are things we can help patients achieve.

And most of us have never seen a home hospice death. Hospitals have sophisticated systems for treating disease; in comparison, systems for caring for the dying are in their infancy. I, like most of my colleagues, have seen many bad deaths. Deaths where a frail, elderly, imminently, and irreversibly dying patient was subjected to chest compressions and traumatic intubation; deaths where pain was not optimally treated. Deaths where patients choked on their secretions, or ones where faces bore terrified expressions of anxiety and fear. Deaths in the intensive care unit without family members present, and deaths where family members were foisted out of the room when the code alarm went off and as many as 20 or 30 medical staff descended on the patient. It is against the backdrop of approximately 50% of all deaths in the United States occurring in acute care hospitals⁴ that the concept of a good death arises. Although this concept has begun to receive attention within the medical community,^5,6 without witnessing hospice deaths, it may be difficult to believe that a peaceful death can actually be the norm.

So, what is it that hospices do to make the experience less awful? First, they bring to light the many symptoms that patients are often reticent to bring to their doctor’s attention: pain, constipation, depression, nausea, anxiety, insomnia, dyspnea, anorexia, and fatigue, to name a few. Then, they treat these as aggressively as a cardiologist treats a myocardial infarction.

Second, they address the impact of the illness on the quality of life of the patient and family. They bring in social workers, home health aides, pastoral counselors, and volunteers to assist with psychosocial and financial issues and with the many challenging day-to-day tasks that come with terminal illness. With early enough referral, they have the time needed to teach coping strategies, preparing the patient and family for the losses of function, relationship, and life that lie ahead.

Third, they are present through all that a patient and family experiences in the last days, weeks, and months of life; they bear witness to the existential as well as the physical, emotional, and spiritual suffering that accompanies terminal illness. Most importantly, hospices help people live as well as possible until they die, with as much dignity as possible, and without fear of dying alone or of being in pain. And, although most of us would agree that death is rarely good, it is this constellation of factors that add up to a "better" death.

So, hospice team meetings run much more smoothly now. I am saddened when I hear of yet another death but am comforted to know that the patient and family’s suffering was minimized and that the patient left this world as peacefully as possible.

	REFERENCES

TOP REFERENCES

 
1. American Society of Clinical Oncology: Cancer care during the last phase of life. J Clin Oncol 16:1986–1996, 1998[Abstract]

2. Billings JA, Block S: Palliative care in undergraduate medical education: Status report and future directions. JAMA 278:733–738, 1997[Abstract]

3. Rabow MW, Hardie GE, Fair JM, et al: End-of-life care content in 50 textbooks from multiple specialties. JAMA 283:771–778, 2000[Abstract/Free Full Text]

4. National Center for Health Statistics: Multiple Cause-of-Death File. CD ROM Series 20, No. 17, 1996

5. Steinhauser KE, Clipp EC, McNeilly M, et al: In search of a good death: Observations of patients, families, and providers. Ann Intern Med 132:825–832, 2000[Abstract/Free Full Text]

6. Emanuel EJ, Emanuel LL: The promise of a good death. Lancet 351:21–29, 1998 (suppl II)

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