Physicians provide high-intensity end-of-life care for patients, but "no code" for themselves
System biased toward overtreatment, say researchers
Executive Summary
Physicians Often Provide High-intensity Care For Patients At The End Of Life, Even When The Physicians Would Not Choose This For Themselves, According To A 2014 Study. Researchers Argue That The Current Health Care System Is Biased Toward Overtreatment. To Address This, Bioethicists Can:
- Fully inform involved parties of risks, benefits, and limitations of near-futile treatments.
- Educate providers on legal protections involving medical decisions.
- Ensure everyone involved understands the prognosis with both continued and discontinued treatment.
Physicians often provide high-intensity care for patients at the end of life, even when the physicians would not choose this for themselves, according to a 2014 study.1
Mark Pfeifer, MD, senior vice president and chief medical officer at University of Louisville (KY) Hospital, doesn’t find this too surprising. "Physicians understand they are both the gateway to modern, life-saving technology, and a beacon of hope for seriously ill patients," he says. "In those roles, I find they do feel obligated to encourage more care than they might choose for themselves."
The majority of 1081 physicians at two academic centers surveyed chose "no code" for themselves, indicating that they would refuse cardiopulmonary resuscitation. "Physicians are seen by the public as being insiders on the real value of aggressive care in the face of incurable serious illness," notes Pfeifer.
If physicians choose less intense care in certain situations, this raises the question as to whether others should do so as well. "Experts’ decisions impact the rest of us," says Pfeifer.
Determine "tipping point"
The study raises questions about why doctors continue to provide high-intensity care for terminally ill patients but personally forego such care for themselves at the end of life, according to the researchers.
"The current health care system is very much biased toward overtreatment. There is a tipping point’ in every disease trajectory, whether it is cancer, heart failure, or dementia," says V.J. Periyakoil, MD, the study’s lead author. Periyakoil is director of Palliative Care Education & Training at Stanford (CA) University School of Medicine.
Beyond this "tipping point," she says, high-intensity treatment becomes more of a burden than the disease itself. Talking to patients and families to understand what matters to them is the best way for providers to find out what that "tipping point" is, says Periyakoil. "Any doctor who cares for seriously ill patients has an obligation to do this, and to help the patient with advance care planning," she adds.
Near-futile treatments common
Ethics consults are often called because family members request more chemotherapy or surgery when these treatments are clearly futile. "But there are a whole range of near-futile treatments," says Timothy E. Quill, MD, professor of medicine, psychiatry, and medical humanities in the Palliative Care Division at University of Rochester (NY).
When treatments might possibly help a little, and they have some very small potential utility, patients can typically get access to these, says Quill, "at least in the way our health care system is currently constructed."
This may change down the road, says Quill, "but we aren’t even close to being there as a profession, or as a society. In the U.S., for better or worse, cost consideration is not really supposed to be part of the conversation for the individual patient."
Bioethicists can fully inform the involved parties of the risks, benefits, and limitations of a near-futile treatment. "But if the patient or family really wants a treatment and there is some utility, ultimately they are going to get it," says Quill.
On the other hand, a patient may indicate he or she doesn’t want treatment, but providers think there is some utility to the treatment.
"From a legal point of view, this issue is settled. But to some doctors, withholding possibly effective treatment may seem like a violation of medical ethics or seem like the wrong thing to do," says Quill. "Having a bioethicist come in can be very helpful."
In one such case, a patient asked to stop post-surgical treatments due to a difficult recovery with complications. "After a week, potential recovery was way tougher than he had imagined," says Quill. "The surgeon told the patient, We just did the surgery. You may well recover.’ But the patient was very clear that he wanted to stop."
An ethics consult was called to ensure everyone understood the prognosis with continuing treatment, and the prognosis with stopping treatment. The patient chose to stop the treatments. "Ultimately, this man had capacity to make the decision, and it was a reasonable decision to make," says Quill.
Interventions demanded by family
Stuart G. Finder, PhD, director of the Center for Healthcare Ethics at Cedars-Sinai Medical Center in Los Angeles, CA, says that decades ago, when patients indicated they didn’t want treatments, it was not uncommon for providers to disregard these wishes.
"Especially problematic was when those interventions would not change the ultimate outcome," says Finder — for instance, for a patient nearing the end of life in which, at best, intervention would prolong the dying process, and might actually increase the patient’s suffering.
"This was, in fact, the impetus for the development of the concept of an advance directive by Luis Kutner in the late 1960s," says Finder.2 "Forty-five years later, however, matters are, more often than not, reversed."
Finder says it’s now far more common for patients or families to request and even demand medical interventions that physicians, nurses, and other health care providers do not believe to be medically appropriate, especially in large tertiary or quaternary care institutions.
"It is physicians wanting to withhold interventions, as opposed to wanting to provide interventions, that now often serves as the more common scenario in which the threat of patients’ wishes not being honored by providers arises," says Finder.
Patient autonomy over-emphasized
Many health care providers fear being sued for failure to provide treatments at the end of life. "Part of that fear is based in lack of understanding of what actually is contained in various health care-related laws, and what kinds of medical decisions are, and are not, protected under those laws," says Finder.
Misunderstanding of the notion of respect for patient autonomy that has emerged in recent years carries even greater significance, according to Finder. "Unfortunately, in the effort to promote the crucial role patients’ goals, values, and preferences should play in medical decision-making, we have over-emphasized the importance of autonomy," he says. "We have made it the primary ethical consideration for medical decision-making."
As a result, says Finder, the equally important issue of the scope of responsibility of physicians, nurses, and other health care providers has been under-emphasized. "Many within the health care professions no longer recognize the breadth of input necessary for making good clinical judgments, and hence, the professional cum moral dimensions of their obligations," he adds.
What began in the 1960s as a movement to empower patients by recognizing their rights to refuse unwanted medical care has transformed into a common belief that patients can both refuse and demand medical intervention, says Finder, and that providers are obligated to respond accordingly.
"Inherent commitments associated with being a professional care provider are undercut," he adds. According to the 2014 study, physicians:
• do not feel that widespread acceptance of advance directives would result in less aggressive treatment even of patients who do not have an advance directive;
• have greater confidence in their treatment decisions if guided by an advance directive;
• are less worried about legal consequences of limiting treatment when following an advance directive.
The study’s findings show that providers know both the value and the limitations of advance directives, says Pfeifer, "and can be used to educate, inform, and counsel individuals, groups, and the broader public."
- Periyakoil VS, Neri E, Fong A, et al. Do unto others: Doctors’ personal end-of-life resuscitation preferences and their attitudes toward advance directives. PLoS One. 2014:28;9(5):e98246.
- Kutner L. Due process of euthanasia: The living will, a proposal. Indiana Law Journal 1969:44(4):539-554.
• Stuart G. Finder, PhD, Director, Center for Healthcare Ethics, Cedars-Sinai Medical Center, Los Angeles, CA. Phone: (310) 423-9636. E-mail: [email protected].
- Mark Pfeifer, MD, Senior Vice President/Chief Medical Officer, University of Louisville (KY) Hospital. Phone: (502) 562-4014. E-mail: [email protected].
- Timothy E. Quill, MD, Palliative Care Division, Department of Medicine, University of Rochester (NY) School of Medicine. Phone: (585) 273-1154. E-mail: [email protected].
- V.J. Periyakoil, MD, Director, Palliative Care Education & Training, Stanford (CA) University School of Medicine. Phone: (650) 493-5000 ext. 65039. E-mail: [email protected].
