Viewpoint
Nov 2000
Bill Moyers' PBS series "On Our Own Terms" looked in on real people facing end-of-life decisions. The 4 part, 6 hour program, had an implicit question for viewers to contemplate: "What kind of care do you want at the end of your life?
Part II of the program reflected on the importance of that question by introducing viewers to the dying process of several patients; some determined to make their last moments more tolerable, others unable to speak for themselves. The patients' experiences illustrated how, even in the absence of effective medical treatment, choices about how to care for a dying person remain. Health care teams, hospice, and loved ones try to address physical, emotional, and psychological needs in an effort to make people who are dying more comfortable. Direct feedback or prior input from the patient about end-of-life care preferences certainly helps in this attempt to allow individuals to die on their own terms. The following vignettes, taken from the program, contrast 3 individuals' involvement in end-of-life planning.
"It' s her life. She' s going to lead it."
Ms. Curr is dying from late-stage ovarian cancer. The viewer meets her after she has decided to stop chemotherapy and to receive comfort care measures only. Homebound, she will lead the remainder of her life as she sees fit, with her family and her garden. Dr. Sean Morrisson, one of her physicians and a pain management specialist, has helped her plan the process that lies ahead in a way that reflects her wishes. Hospice will visit Ms. Curr at home regularly to assess whether she can be made more comfortable. Dr. Morrisson will continue to care for her if she needs a doctor or if she changes her mind about wanting to be at home. "There is no right way to do this," we hear him tell her. Still, there is a sense that with the support of all her caregivers, she is achieving the dying process that is right for her.
"It would be nice to know if he wanted this."
Upon arrival to the emergency room for an episode of acute illness, Mr. Gentry went into respiratory arrest. With no information immediately available about possible advance directives or family contacts, the decision was made to intubate him though he could not provide consent. In the words of one of his physicians, "treat the acute problems first, ask questions later." We first meet the unconscious patient in the intensive care unit. According to the hospital team, his prognosis is dismal; life support, as they see it, is prolonging his dying. Mr. Gentry' s brother and niece have been convened for a family planning meeting, at which they are presented with the question about whether to withdraw care. They are asked to provide substituted judgment for their incompetent relative or to anticipate what course of action the patient would want if he could comment on his situation. Uncertain as to what the patient would do in this instance, the providers and the family can only guess how he would have chosen to orchestrate his dying.
"Comfortable and pain free"
In a nursing home room, 3 daughters introduce us to their mother, Ms. Lane, a woman with late-stage Alzheimer's who has suffered 3 strokes. They describe how, despite the impossibility of communicating with her coherently, they come to visit her daily: to talk to her, feed her, and make certain that she is being cared for respectfully. What they want for their mother is that she be made comfortable and pain free. Given her advanced disease status, they oppose the future use of tubes or machinery, which they consider dehumanizing. Ms. Lane's dying process reflects the values of her daughters who want to promote what they think is in their mother's best interest.
Where Ms. Curr actively participated in determining how she would spend the rest of her life, the 2 other patients lacked decision-making capacity and advance directives. No one felt able to infer what choices Mr. Gentry would have made if he could have commented on his current situation or what values he would have used in the process. Family and members of the health care team had to reach decisions for the patient based on what they consider to be in his best interest. Ms. Lane's daughters directed their mother's care according to their notion of what was acceptable, partly informed by values the patient once held.
According to a Gallup poll a majority of Americans would like to die at home, free of pain, and surrounded by loved ones. The discrepancy between this stated preference and reality--most people continue to die alone in the hospital, experiencing discomfort--is regrettable. The program made a good-faith effort at laying out different approaches to end-of-life care and at generating a discussion with the general public about end-of-life planning--, a first step toward reducing the gap between how we would like to die and how we do.
