Caring For The Person,
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., FACP
PsychoSocial Oncology Task Force
Chao Family Comprehensive Cancer Center
Univ. California, Irvine


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 Care
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 End-of-life Care 
In March 1992, I was still an optimistic medical student when I wrote: "Physicians play an integral role in the death system, directly as the messengers of unfortunate news to patients and family and indirectly by shaping how people develop their own death systems. It is impossible to know how many maladaptive behaviors and depressive episodes are triggered by physiciansí insensitive delivery of negative information. Prior to being confronted by death, physicians need to be conscious of their own attitudes if they are to enable patients and their family members to cope effectively with dying."[1] 

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 compassion.
Bob had been the promise of a "great surgical case," one to be studied by the house staff, to learn about this interesting pathology. However, the residents were learning more than just how to treat esophageal cancer., they were being taught the "art" of detachment by their attending physicians. Without some balance to their training, these doctors-in-training would become another generation of cold, uncaring physicians. Even more disturbing was the realization that members of my chosen profession were failing Bob in his final days because they themselves were unable to deal with his terminal diagnosis. This was particularly evident when Louise discovered the extent of the disease by reading Bobís chart, not because a doctor told her.

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 Disease
I was saddened to acknowledge that the students and residents who cared for Bob were taught more about the treatment and pathology of esophageal cancer than they were about the person coping with the disease and the impact of the diagnosis on him and his family. This case exemplifies those physicians who still believed the too prevalent falsehood that "once a terminal diagnosis is made and clinical skills prove ineffective, physicians misconceive that they have nothing more to offer and equate inability to cure the disease with failure."[1]

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 Care
From this experience in 1999, I realized that education is still needed for attending doctors, residents, interns and medical students in the area of death and dying. Fortunately in the past year there has been a growing recognition by the public and medical institutions of the need for education in what is now being termed "End-of-Life Care." Through incorporating death education into medical school, residency training, and continuing medical education programs, physicians may eventually realize that their role does not end when a terminal diagnosis is made and that we can focus on helping patients live until they die.

Projections for the Future in Death Education
What can be done to promote End-of-Life Care?

  • Death education or education on End-of-Life Care should be included as part of medical school and residency curriculum. For those not in training, courses should be offered as continuing medical education.
  • Multidisciplinary teams can help coordinate end-of-life care issues across the specialties, in particular, when the patientís physician or consultants are uncomfortable with providing end-of-life care.
  • Physicianís adept at End-of-Life Care, particularly those comfortable with exhibiting care and compassion could accompany teams on attending rounds to share their expertise with medical students and residents. 
  • A new type of positionó"Physician Grief Counselor" could serve as medical liaisons between the medical staff and the patient and family members to translate the medical terminology, enhance communications and provide support. 
  • 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.

    Summary Points

    • Physicians play an integral role in the death system as messengers of unfortunate news and by influencing how patients and family members may deal with a death.
    • Physicians need to be conscious of their own attitudes towards death if they are to enable patients and their family members to cope effectively with dying.
    • Physicians need to learn that death is not a failureóit is part of the life cycle.
    • Physicians need to learn how to deliver bad news with sensitivity, to choose their words with care and compassion, to help the patient and the family cope with difficult issues, painful choices and provide all the care options available.
    • Physicianís role to treat and heal their patients does not end with a terminal diagnosis.
    • One of the most difficult roles of a physician is knowing when to let go of treatments and when to just "be" with our patients.
    Questions to Ponder - The Unanswerable "Why's":
    • "Why were these physicians neglecting Bob and his family during his treatment?" 
    • "Why did these physicians abandon Bob during his final days?" 
    • "Why didn't this team discuss hospice options with the patient and family?"
    • "Why didn't the surgical team arrange for a multi-disciplinary team meeting?"
    • "Why is the medical profession afraid to deal with the subject of death?" 
    • "Why do physicians believe that their only role as physician, is with the living, not with the dying?"
    • "Why canít physicians see the person behind the disease?" 
    • "Why donít hospital have physician grief counselor or family mediators on staff?" 
    • "Why canít a doctor take the time to hold the patientís hand and just be there?" 
    • "What is the physicianís role with the terminal diagnosis when there are no treatment options?"
    • "What could have been done better to improve the outcome in this case? From the patient's perspective? From the family's perspective?"

    In Memory of Robert David Lertora 8.24.35-3.23.99

    References:

    1. Dyer, K. Reshaping Our Views of Death and Dying. J Am Med Assoc 1992;267:1265-70.
    2. Grollman, E. Living When a Loved One has Died. Boston, MA: Beacon Press; 1995, p. 8.
    3. Grollman RA. Why? Journeys Newsletter. Washington D.C.: Hospice Foundation of America, March 2001 p. 3. 



    Healers and Healing
    © 1996 Kirsti A. Dyer, MD, MS


    Healing,
    the ancient covenant between physician and patient
    a promise to cure,
    to save,
    and to restore.

    Healing
    appears in many forms--
    The right antibiotics for an infectious organism
    The curative chemotherapy for a malignant tumor
    The correct diagnosis in a complex case.

    But what of the terminal diagnosis
    with no treatment options
    when your diagnostic skills are no longer required
    your presence will not alter the course?

    Then
    Healing manifests on the purest level--
    an extension of the soul,
    aiding in the acceptance of the process
    finding peace and serenity
    on the path leading to transition.

    Healing
    of  pain,
    suffering,
    and emotional distress.
    No longer with technical devices
    and the newest medication.

    But just
    A cheerful smile
    An open ear
    A gentle touch
    A warm embrace
    Taking the time to listen, to be
    to share a part of yourself.

    Healing
    becomes an expression of caring and love.
    The greatest gift of all
    may be the ability
    to walk with a person
    help provide them with strength 
    and courage
    on their path to transition
    and then let go.


    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: griefdoc@kirstimd.com


    © 2001 Kirsti A. Dyer, MD, MS. Journey of Hearts, www.journeyofhearts.org
    This article may be reproduced for educational purposes provided this copyright is included.