Making difficult decisions is part of the work of medicine. Good decision making depends on a variety of factors, including knowledge and clinical reasoning skills. Deciding which antibiotic to use or what particular surgical approach to follow are examples of difficult decisions that require professional expertise on the part of the clinician. In caring for very sick and dying patients, decisions are particularly difficult because professional expertise and opinion mix with very personal choices on the part of patients and families. Whether a feeding tube should be placed is not just a technical problem or a dispassionate weighing of known benefits, burdens, and probabilities.31 Patient and family preferences must be incorporated into the process if a good decision is to be made.
Mr. C, who was introduced at the beginning of this chapter, and the ICU staff faced such a difficult decision-should aggressive life support be continued or not. This decision was not a purely medical decision but revolved around Mr. C's understanding of his condition and his goals for the future. Clinicians encounter many such decisions that require patient and family participation. What is the patient's resuscitation status, full code or DNR? Should a further round of chemotherapy be tried? Should a patient with chronic obstructive pulmonary disease and recurrent admissions to the ICU be electively intubated during the next medical decompensation? Should a feeding tube be placed in a patient who has swallowing difficulties? Should a patient be referred to hospice? Should a patient be transferred from the nursing home to the acute hospital? Should antibiotics or IVs be used if a patient develops pneumonia? Studies suggest that physicians do a poor job when talking with patients about relatively straightforward medical decisions.32 How much more difficult these decisions must be!
Difficult decisions can be understood to represent major branches in patients' story lines. Depending on which road is taken, the patient's life will change in profound ways. For example, being admitted to home hospice has multiple effects on the system of care for the patient and family. Beyond this, the symbolism involved in being admitted to hospice may allow patients and families to acknowledge that dying is actually happening and result in dramatic changes in how they deal with the illness and one another.
Many physicians are extremely ambivalent about incorporating patient and family preferences into difficult decisions. Some years ago I was teaching a mixed group of physicians and nonphysicians about how to discuss patients' resuscitation statuses. I asked everybody, "Do you think we should incorporate patient preferences into these decisions?" All nodded in the affirmative. I then addressed only the physicians: "Physicians. Be honest. When do you ask a patient about their preferences? Do you ask all seriously ill people or only those who you think should have a DNR status?" They sheepishly admitted it was usually when they thought a DNR order was a good idea. The lay members were appalled to hear this. Before we collectively lambaste the medical profession on this point, perhaps we should consider more deeply this ambivalence.
Most physicians tend to agree, in principle, about patients' rights to be involved in decision making. However, many also are skeptical of the lay public's ability to make intelligent decisions about health care. Some would say that proper incorporation of preferences means that the physician suggest a therapy and the patient agree, a process called informed consent.
Informed consent, as it is commonly understood, is a process whereby the physician suggests a therapy or procedure and the patient (or proxy) consents. Many clinicians have taken a very literal interpretation of informed consent and construe it to be the completion of a form required for certain invasive procedures. A lumbar puncture (the doctor's idea) is consented to by the patient, who signs a form. Medical culture has required such form signing for certain procedures but not for others. A less literal interpretation of informed consent would mean that any additional therapies or changes in the plan of care would require the understanding and agreement of the patient or proxy. Such an interpretation certainly expands expectations for patient or proxy involvement. However, this interpretation is still a very narrow way of construing an incorporation of preferences. The physician remains the primary decision maker. The patient's job is to consent (or not).
There is some wisdom in this approach. Most physicians can tell horror stories of patients and families who have ordered very specific therapies, much like ordering a pizza: "I want antibiotics with a side-order of intravenous fluid to go." This extreme of consumerism is very difficult for physicians, who often think such orders are ludicrous. They (we) resent being treated like short-order cooks. In other fields of medicine this is a minor annoyance. If a patient presented to a surgeon with abdominal pain and insisted on an appendectomy for something clearly not appendicitis, the surgeon would probably feel quite comfortable refusing and say the procedure "is not indicated." In end-of-life care things are more complicated. Many hospital and health care policies presume the almost absolute primacy of the patient or proxy regarding end-of-life decisions. Clinicians may feel strongly that intubation, cardiopulmonary resuscitation (CPR), or antibiotics are "not indicated," yet most hospitals (and society) treat these decisions very differently. No matter how strongly "not indicated" CPR might be considered by clinicians, many hospitals see the full code choice as an absolute right of the patient that cannot be abrogated. The message is: decisions at the end of life are somehow different from other medical decisions; patients and their families are in charge. I think most of us would agree this is not such a bad thing, in and of itself. You may think, "That's the way I want it to be for me!" The problem, as doctors are fully aware, is that sometimes patients and families make very, very foolish choices - not that this is a surprise; people make foolish choices everyday. However, physicians and other clinicians may feel coerced into providing treatment that they feel is of little, if any, benefit. Indeed, sometimes we feel coerced into doing things we feel will be downright harmful, and that feels really awful.
Hence, physicians are rightly wary of extreme consumerism. If that is what "incorporating preferences" means, they (and I) want nothing to do with it. On the other hand, the narrow "informed consent" approach preferred by many physicians serves equally poorly. If a patient prefers to die at home rather than in the hospital, is this something for the physician to offer (like a procedure) and to which the patient must consent? I think not. The issue for many seriously ill and dying patients is not so much a choice of this procedure or that or whether to take out an appendix or not, but how that person and that family want to live and to die. Patient and family wishes and values are not some peripheral issue, they are the main issue.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.