|Caring For The
Not Just The Patient In End-of-Life Care
Kirsti A. Dyer MD, MS, FAAETS
|This is an excellent
two pages for every 3rd and 4th year medical student to read frequently.
These students come into the program with
compassion, but we "train" it out of them during these years.
C. Ronald Koons, M.D.,
Doctors are taught in medical school to view death as a failure. When faced with caring for a patient with a terminal diagnosis, we are taught that there comes a time when "there is nothing more you can do." These are the times when a test, a study, a surgical treatment, a medication, or an x-ray no longer make a difference. It is at this point in a patientís life that all of the technical skills of modern medicine can only help to make a person more comfortable. Nothing more.
|A Case of Inadequate End-of-life
In March 1999, I learned an invaluable and unfortu-nately unflattering-lesson about my profession as I witnessed the medical treatment of my sisterís father-in-law. I watched how Bob and his family were treated by surgeons at a premier Bay Area teaching hospital. The family came to the big city university hospital with hope and the implicit promise that something could be done surgically to cure his esophageal cancer. They left with their hope shattered, their faith in physicians shaken, and the clear impression from the medical team that "Heís broken. Letís not waste time now."
This encounter gave me a greater understanding of a patientís and familyís frustrations with medical treatment and the impact of poor physician communication skills. I found myself translating for physicians who didnít have, or wouldnít take, the time to talk with the family about tough questions, such as what to do about CODE status and what was the prognosis. I became disgusted with myself when I instinctively made excuses for unknown colleagues, covering for other physicians who couldnít see outside the narrow window of their discipline. This experience left me feeling embarrassed, disappointed and disillusioned with my own profession. This personal case left me renewed my conviction of the need for medical education in the areas of death and dying; furthermore it underscored the importance of communication and caring for physicians in dealing with patients and their families.
The Need for Education on
At that time, I was hopeful that the medical field would recognize the need for "death education." Yet, as I discovered in 1999 at this premier university teaching hospital, this was not the case. During Bobís time at the hospital one intern told Bobís wife, Louise: "He is pretty anxious and is using a lot of morphine. The best thing for him would be to get out, walk around, and go down to the cafeteria." I stood nearby, aghast, realizing that he was talking about a person with a feeding tube who hadnít been able to tolerate any food for a month because of intense vomiting. Perhaps the intern wasnít even aware of what he said, or he was only mirroring the communication skills he had been taught. However, the insensitivity of this team of physicians and those in training was severely impacting Bobís quality of life.
The family felt abandoned by the "lifesaving surgeon"
who was brought in on the case with the expectation of a cure, only to
perform a quick open-and-shut operation because of the extent of the disease.
Unable to fix the problem, the surgeon never visited again. Instead the
case was left in the care of his "lemmings," the familyís term for the
entourage of residents, interns and students, a group in toto that seemed
to know little of pain management, hospice options, and even less about
As a result of this experience, I found myself questioning the medical teamís interpretation of the basic covenants of the doctor-patient relationship that I had been taught: the promise to treat, to heal and to restore. I realized they had a much different view of this sacred relationship. The team judged that a dying patient was less deserving of time and consideration. "We have time to care only for the living," was the clear unspoken message.
The situation was made worse by the teamís paternalistic attitude, telling the family it was best for "their patient" to stay in the hospital. "We can keep him more comfortable here." I gave the family another option. By educating the family about hospice care, they had a choice. With information about hospice and what they might expect they felt empowered to go against the wishes of the medical team and take Bob home.
Bob went home, not to die, but to live until the time came. The end came "On his own Terms," two days after leaving the hospital. This country boy was home, living in his own bed with his family, not dying in a big-city hospital.
What has been taught: Terminal
Medical education places a high priority on teaching how to diagnose, treat and cureóthe concerns of the living. Teaching how to help patients to live until they die has been ignored. Skills such as caring, listening, patient contact, and connecting with another person are often devalued. Why canít a doctor take the time to hold the patientís hand and just be there? The answer is simple. In taking someoneís hand, a doctor risks losing the objectivity and the distancing we are so carefully taught in training and possibly connecting with someone who is dying.
Unfortunately, we are practice medicine in an era where "hand holding and listening" are considered to be major time-sinks, not ICD reimbursable diagnoses, and are often viewed as tasks for nursing or ancillary staff. During my training, I was told by a respected attending, that there was no point in pursuing hospice as a physician, since it was all about nursing. We can only hope that with a bit more time and effort, public education and pressure on the medical community the attitudes towards terminal care will change.
What should be taught: End-of-Life
Projections for the Future
in Death Education
The Gift in End-of-Life Care
Colleagues often ask why I am drawn to End-of-Life issues. The answer is easy. Some of my most powerful memories in practicing medicine are from connecting with terminally ill patients and families; they have been my expert teachers and provided me with some of my most cherished, memorable experiences.
Helping patients in their final journey often is not easy, but it can be very rewarding. Still, in this area of medicine we are faced with so many unanswerable "Whyís?" I find the thoughts of Pabbi Earl Grollman helpful in coping with this difficult question:
"Why" may be more than a question. It may be an agonizing cry for a heart-breaking loss. It is an expression of distress, disappointment, bewilderment, alienation, and betrayal. There is no answer that bridges the chasm of irreparable separation. There is no satisfactory response for an unresolvable dilemma. Not all questions have complete answers. Unanswered "Whyís" are part of life. The search may continue but the real question might be "How [do I] pick up the pieces and go on living as meaningful as possible?" [2,3]I wrote the poem, "Healers and Healing," as the answer to my question "What is the physicianís role with the terminal diagnosis when there are no treatment options?" At the time I was struggling to find my role in caring for a 38-year-old patient with terminal cancer. With her courage in living with her disease she taught me the importance of knowing when to let go of treatments. I also learned that one of the greatest gifts we can give our patients is the ability to just "be there," "walk" with them, and provide them support courage and strength on their final path.
In Memory of Robert David Lertora 8.24.35-3.23.99
1. Dyer, K. Reshaping Our Views of Death and Dying.
J Am Med Assoc 1992;267:1265-70.
Healers and Healing
© 1996 Kirsti A. Dyer, MD, MS
About the Author
Kirsti A. Dyer, MD, MS, FAAETS, BCETS, BCBT is an internist in North California. She has been interested in education on death and dying since a medical student and published several articles on various topics. She is also the Domain Designer of the Journey of Hearts Web site www.journeyofhearts.org, an online resource for anyone who has experienced a loss. She can be reached via e-mail at: firstname.lastname@example.org
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