An 82-year-old woman with advanced Alzheimer's disease was admitted from a nursing home for treatment of a 6 cm right frontal lobe intracerebral hemorrhage, her third intracerebral hemorrhage resulting from amyloid angiopathy. She was stuporous and mute on neurology admission, and subsequently developed bilateral aspiration pneumonia and coma. Her neurologist recommended palliative care as the most appropriate treatment in this setting given her diagnosis and prognosis. But her daughter, who also was her Durable Power of Attorney for Health Care, insisted that her neurologist “do everything possible” to save her life. What should the neurologist do?
Most experienced neurologists have encountered a situation similar to this one in which a loving family member appeared unwilling to allow an obviously dying patient to die, insisting on aggressive treatment that the neurologist regarded as inappropriate given the diagnosis and prognosis, rather than agreeing with more appropriate palliative care. Explanations for the surrogate decision maker's demands in such cases may include an unwillingness to accept the bad prognosis, unrealistic expectations of medical treatment, uncertainty about the right course of action, fear of the future, and guilt over not ordering aggressive treatment. This issue arises with sufficient frequency that practice guidelines are necessary to address it thoughtfully and compassionately.
In a 2009 paper in the Annals of Internal Medicine, Timothy Quill, MD, and colleagues proposed a six-step approach for physicians faced with dilemmas like this one. First, the neurologist should explore with the daughter exactly what she means when she says to do everything possible. Most surrogates restrict the types of treatments they request to those that plausibly could be helpful. Usually they do not want physicians to order every possible life-prolonging therapy but have a more nuanced balance of the benefits and burdens of therapy. Implicit in their request is their fear of the future and their wish that physicians not abandon the patient no matter how ill or hopeless her condition becomes. Some surrogates have an unrealistic binary view of therapy as everything or nothing. They may be unaware that palliative care is a holistic and comprehensive treatment plan that is not simply “doing nothing.” Physicians can initiate the discussion of the patient's values and goals by asking surrogates open-ended questions about how they think the patient would wish to be treated in this situation, what the patient has said about others who were terminally ill, by asking them about their worries, fears, and hopes, and by asking how others in the family are handling the illness.
The second step is to propose a philosophy of treatment stating the goals of treatment that are consistent with the patient's values and health care wishes in the context of their diagnosis and prognosis. In this case, the neurologist could propose that because the patient is dying and likely will suffer unjustifiably from further aggressive therapy, the appropriate goals of therapy are palliative. The third step is to recommend a plan of treatment that achieves the goals. In this case, a palliative medicine consultation and palliative care order set would be the best way to achieve that goal. The fourth step is to provide emotional support to the surrogate decision maker through an empathic discussion highlighting the difficulty of the decision, the fact that most other surrogates faced with this problem would make the decision for palliative care, acknowledging the stresses, burdens, and anxieties of surrogate decision making, emphasizing the benefits to the surrogate in a having an agreed-upon treatment plan, and the benefit to the patient by minimizing suffering and following her wishes. The final steps are negotiating other disagreements and employing a harm-reduction strategy to prevent further treatments that do not advance the patient's health care goals.
Another way in which this type of dispute has been conceptualized is that the requested aggressive treatment would be futile in this situation, that is, it would not improve the patient's medical condition, and therefore the physician is not required to order it even if a lawful surrogate demands it. The topic of medical futility remains controversial because, although physicians can justifiably assert medical futility on quantitative grounds if they can show that a treatment will not produce a physiological effect, their claim on qualitative grounds — that a physiologic effect would not yield benefit to the patient — remains embedded in their own values and perceived quality of life. Family members may see benefit if a patient's life is prolonged even at a diminished quality whereas physicians may not see continued life in that state as beneficial for the patient. Because physicians have no special authority over deciding the benefit of a patient's continued life, and because futility disputes create an adversarial relationship between the physician and the surrogate, it is usually best to avoid relying solely on a medical futility argument when negotiating such a dispute over treatment.
Even if the dispute were conceptualized in the context of medical futility, its resolution contains similar steps. Surrogates need to be kept informed of the patient's current diagnosis and prognosis, and for their emotional and physical needs to be adequately addressed. In their discussions with the surrogate, the neurologist and other members of the health care team should reinforce the diagnosis, prognosis, appropriate treatment, and try to frame the discussion into realistic expectations. Continuity of care and compassion always should be maintained. Surrogates need reassurance that their decision for palliative care was the correct one because it respected the patient's wishes. The palliative care plan should insure the patient's comfort and encourage the surrogate to spend time as much time as possible with the patient.
In a Neurology paper published earlier this year, Antje Seeber, MD, and colleagues studied the prevalence of discussions between neurologists and neurological patients or their surrogates about treatment restrictions in six neurological diseases, including severe stroke. They found that discussions tend to be triggered by life-threatening situations despite the fact that it would be better to engage in the discussions earlier in the course of illness to be sure the patient's preference for treatment are incorporated into medical decision making. Neurologists caring for patients with chronic and progressive neurological conditions should initiate these discussions during clinic visits to assure that the patients' wishes are known and can be followed.
Requesting the assistance of nurses, social workers, chaplains, the primary care physician, or bioethics consultants may help the family member serving as surrogate decision maker to better understand the medical situation and feel supported to make the difficult decision. The mitigation of surrogate guilt over the decision is of particular importance. Guilt can be lessened by reassurance that the family surrogate is following the wishes of the patient not to be treated aggressively when doing so will not provide benefit, emphasizing that lessening of unjustified suffering is an essential goal, and therefore that the palliative approach represents a loving and respectful course of action.
James L. Bernat, MD, is the Louis and Ruth Frank Professor of Neuroscience and Professor of Neurology and Medicine at the Geisel School of Medicine at Dartmouth. He is the former chair of the AAN Ethics Law & Humanities Committee and is the author of Ethical Issues in Neurology, 3rd ed. (Lippincott Williams & Wilkins, 2008).
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