No one should face death alone
It was just before dawn when I found the 40-year-old woman -- pale, sweaty and anxious -- cradled in bloody sheets and towels. A victim of end-stage cervical cancer whose kidneys were also shutting down, she had recently decided enough was enough. To be specific, she wanted no more radiation, no more transfusions, no dialysis and, above all, no heroic measures if her breathing stopped or her heart slowed to a standstill. The “do not resuscitate” order was duly entered in her hospital chart, alerting medical personnel to forgo life support when the final crisis came.
But no one expected the crisis to come so soon. When the new hemorrhage began, no family members were at the patient’s bedside. The already short-staffed night nurses were passing medications and caring for other critical patients. The patient’s intern, resident and attending doctor were not in the hospital.
Which left me -- a fourth-year medical student merely passing by -- with a dilemma.
I also had work to do before my long night on call became another grueling day. But this patient was alone and scared. And so I debated: Should I stay with her until others arrived? Whether her death was an hour or a day away was not the point. She was dying, and she wanted someone by her side.
Last month, this poignant scene from long ago came back to me as I listened to a lecture at my hospital in a six-week series on pain management and end-of-life issues. Admittedly, I had not taken my plush auditorium seat entirely by choice. Rather, I was fulfilling an obligation. To maintain a medical license, California physicians must complete 12 hours of continuing medical education on these topics by the end of 2006.
But once the speaker -- a radiation oncologist and palliative care specialist -- started to talk, she captured my attention. Palliative care, Judith Ford explained, is not just about relieving pain but also easing the loneliness of death. Plus much more. To borrow Ford’s words, “We don’t just sing ‘Kumbaya’ and hang morphine drips.” Ford only wishes more people took advantage of palliative care services -- physical and psychosocial -- at earlier stages of illness.
Ford told the story of another dying woman in her 40s. Her greatest pain stemmed from the fact that none of her children -- including two young adults -- were able to accept her diagnosis of terminal cancer. Instead, they would prop her in a wheelchair, take her to the mall and buy her new clothes and other pretty things, all the while declaring she would soon be well. Not until she confessed her profound loneliness to a palliative care professional did a family meeting produce the support the mother desperately craved.
Is it possible that end-of-life isolation -- or abandonment, to use a blunter term -- is more widespread now than ever, despite medical advances?
In thinking about this, take a step back in time. During the 19th century, a borning room was the place in many houses where babies entered the world and the sick and elderly exited. As a result, few people were shielded from death. Today, in contrast, roughly 70% of all Americans die in hospitals -- literally, behind closed doors.
Yes, hospitals often provide essential services to dying patients, but their very mission -- to sustain life -- can send a hidden message that dying represents failure.
At the root of the problem is not hospitals, but people. Me and you. After a “do not resuscitate” order is written, some doctors feel their job is done. The DNR order allows them to drift away, both professionally and emotionally.
In other cases, dying patients and their family members, as well as doctors, do not accept the inevitable. It’s easy to see why. Modern medicine offers many straws for the desperate to clutch. But some measures get in the way of final goodbyes.
Perhaps the time has come for new acronyms. DNAR, or “do not attempt resuscitation,” would remind the overly aggressive that medical resuscitations of the very sick and elderly are often futile, thus re-focusing attention on human and spiritual needs at the end of life. An editorial in the popular doctors magazine Medical Economics recently proposed another acronym -- AND, for “allow natural death” -- to convey a similar message.
When I remember the bleeding woman with cervical cancer, however, “do not abandon” sums it up for me. In her case, a thoughtful end-of-life decision still went terribly awry. Although I and several others remained with her throughout her last day, her family never did appear.
Whether they were called too late by hospital staff or unwilling to come, I never found out. Perhaps the patient herself kept them in the dark.
All I know for sure is that she died as few would choose -- deeply lonely. Many people do. As healthcare professionals, patients and family members, we can all do something about it.
Claire Panosian Dunavan is an infectious diseases specialist and professor of medicine at the David Geffen School of Medicine at UCLA.
