Ten Commandments for the Care of Terminally Ill Patients
Am Fam Physician. 1998 Mar 1;57(5):935-940.
One criticism of physicians is our difficulty in responding to the emotional circumstances of patients who are terminally ill. Working as a consultation-liaison psychiatrist for many years, I have had an opportunity to assist physicians from all specialities in attending their patients who are terminally ill. Even the most thoughtful physicians struggle with issues that arise during their care of dying patients. I am not referring here to euthanasia or assisted suicide of the terminally ill,1 but rather the entire emotional climate that surrounds this final process when everything that can be done medically is being done.
About a decade ago, I read an article titled “The Ten Commandments of Medical Etiquette for Psychiatrists”2 that helped me focus on my responsibilities as a consulting psychiatrist. Also, I was aware of another article that made a similar contribution to internal medicine.3 I am offering a similar outline for the emotional care of the patient during the terminal stages of illness. Although much more could be said about each area listed below, this outline is meant only to form the foundation for the individual variations that each case will demand:
I. Be a “ straight shooter.” For years, I have observed that patients and their families insist that the physician be a “straight shooter.” This means to me that the physician should use the truth when it is requested and in the amount it is requested to assure the optimal sense of well-being under the circumstances. It may not cure or bring happiness, but being truthful indicates to the patient that the physician can be counted on to accurately describe and negotiate the difficult times ahead. Listening to the patient or their families will, in large part, indicate when they need plans for negotiation of difficult times. Remember, ethnicity and culture may make a difference,4 so ask patients if they wish to receive the information and make decisions or if they prefer the family to handle such matters.
II. Be empathetic. The quality of understanding how another person feels and to be in “tune” with your patients is extremely important and forms the basis for all contact with the patient and the family. Temporary or partial identification with your patient will allow you to understand what he or she is feeling. Patients feel better when you show them that you are aware of their emotional experiences.
III. Ask about consultations. Patients and their families should be asked about the use of additional subspecialty consultations. This topic should be raised by the attending physician at any time during the terminal stages, but it is especially important in the final stages. At this time, the patient and the family are most vulnerable and dependent on the attending physician and may be reluctant to ask for additional professional help because they do not wish to offend. Introduce the idea of medical, psychiatric, surgical or other sub-specialty consultation early. Your willingness to assemble a team of caregivers will not be perceived as an indication of inadequacy, and you will only gain respect from the patient and the family.
IV. Do not abandon. One of the most distressing situations for the patient or the family is for the primary physician to “sign off” of the case, leaving the care to an unfamiliar physician, such as a hospice or a nursing home physician. Even if the primary care physician is not directly involved with the treatment, he or she should spend time with the patient and the family. It is especially important to be there during the bad times and be aware of the family's needs, because this is indeed a family affair.5
V. Maintain a regular routine of hospital calls. Just as it is important not to abandon the patient to a consultant, it is equally important to maintain regular visits to the patient who is terminally ill. The patient and the family are acutely aware of the frequency and the duration of visits. Physicians have a tendency to change their schedule and shorten their visits when patients enter the final stages of illness. One does not have to be a psychiatrist to be aware of the impact of this behavior on the patient and the family. This distancing tactic is well described.6 Keeping up the frequency and duration of the visits will increase your understanding of the patient, the family and yourself.
VI. Obtain support from colleagues and family. There are many causes of burnout in those who care for the terminally ill.7 Also, it goes without saying that physicians frequently need support or possibly personal involvement with a mental health professional. However, to avoid the peaks and valleys of emotional response, it is acceptable to seek support from your colleagues and hospital staff by discussing patients' feeling and situations. Once a discussion is started, many colleagues and staff may join in the exchange of information and feelings. These discussions often take place at the nurses' station in the intensive care unit or the coronary care unit. The physicians' lounge and the surgical dressing room are other areas where discussions can be held. Maybe the best of all situations is to discuss your feelings about a certain patient with a spouse or a close family member. The practice of medicine is also a family affair.
VII. Communicate with the patient's family. Family members can be a great source of information, supportive advocates and decision makers for the patients. But, they can also oppose the wishes of the patient and the treatment team. Like the patient, they reveal a wide range of responses to the terminal illness of a family member that requires understanding at critical junctures.8 Appointing family members with whom to communicate regularly can be helpful. When talking with the family, remember to use as little medical jargon as possible and expect that, as with the patient, there will be anger, distrust, fear of the medical surroundings, depression, frustration, guilt and a great deal of anxiety.9
VIII. Preserve the humanness of the patient. It is essential to maintain the idea that “quality of life” is an important issue even for patients in whom a cure is no longer expected. This is true even for patients who are close to death.10 Human values remain important.11 Again, the physician's response can be one of distancing to preserve the “powerful healer” image. Also, physicians can hide behind the machines, charts, bottles, tubes and mechanical apparatus that overwhelm the family and dehumanize the patient. While all of these machines are necessary, we should remind ourselves that a cure is not the objective, and our goal is to help the patient remain a human being during the process of dying.
IX. Be concerned about where the patient dies. We assume that if the patient is in the hospital or in a hospice that necessary care will be available. However, some patients and their families will want to spend this time in other places, such as the home. Then, the availability of urgent care, financial help for the patient from local charities, pain control and administration of adequate amounts of medication become real issues. Physicians must be aware of what support is available in their communities.
X. Preserve hope. I leave this point to last because the preservation of hope should be the last to leave. When physicians think, “No matter what I do, she (the patient) is going to die,” they may be unable to help their patients preserve hope. Most patients, even the most realistic, leave some room for the possibility of a cure. It is this glimpse of hope that sustains them. Here, as so often, humanity depends on honesty. Do not use false evaluations in the response to the inevitable question of “How long do I have?” Usually what the patient wants is someone to listen to them in an objective manner. Share the hope and do not paint the picture as completely hopeless or emotionally abandon the patient with words such as “always” or “never.” 9 We should be aware of our own feelings such as guilt, helplessness and inadequacy. We do not need to validate our competency as physicians by the survival of every patient. When hope is preserved, the patient will show much confidence and appreciation.12
Dr. Whitten is assistant professor of psychiatry at the University of Missouri at Kansas City and senior attending psychiatrist at Western Missouri Mental Health Center in Kansas City. He is also director of the Consultation-Liaison service at Truman Medical Center, Kansas City.
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Copyright © 1998 by the American Academy of Family Physicians.
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