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Advance directives an important tool in treating dementia patients at EOL
Directives reduce treatment decision burden on families
The U.S. Supreme Court ruled in 1997 that patients have a right to palliative care to alleviate pain and suffering. But what if the patient is afflicted with Alzheimer's disease or another form of dementia and is unable to communicate whether he or she is experiencing pain?
Dementia is often a comorbidity in patients with advanced age, which further complicates treatment decisions, according to Joseph J. Fins, MD, director of medical ethics at New York-Presbyterian Weill Cornell Medical Center in New York City. This also means that physicians and other clinicians in all medical service areas must try to understand and treat the medical needs of such patients, Fins says.
To describe the serious challenge in treating dementia patients, particularly those with advanced dementia at the end of life, Fins turns to Homer's "The Odyssey."
"It's classically described in the ethics literature as the Odysseus dilemma," Fins says.
As Fins relays the story, Odysseus was taking his boat back to Ithaca to be with his wife, Penelope. On his way home, he knew he would sail past the sirens, whose call would tempt the crew to go back, an action that would not have been in their "actual, authentic interest."
As the poem goes, Odysseus advises his sailors to plug their ears, bind him to the mast, and not to listen to him as they passed the sirens, so that they would ignore his call to go back, which would have led to shipwreck and death. His sailors did as he requested, and the boat returned to Ithaca safely.
In that event, it becomes a matter of "discerning which is the authentic self," Fins tells Medical Ethics Advisor. In the modern world, patients sometimes have advance directives, but their mental status is so changed, with such patients often becoming disruptive and combative at end of life, experts say, the challenge is treating the patient according to the advance directive. That advance directive may have been determined years prior, perhaps after initial diagnosis, before the disease progressed to advanced stages.
Often, the patient will have declared in an advance directive that he or she wants no heroic efforts at end-of-life, but when the end of life comes, that patient who once declared "Do not insert a feeding tube," is insisting that he or she be fed, Fins says.
There is an ethical dilemma — to feed or not to feed, for example.
David H. Brendel, MD, PhD, is an assistant professor of psychiatry at Harvard Medical School and is chair of the institutional review board at McLean Hospital, a psychiatric facility in Belmont, MA.
Brendel indicates that the ultimate challenge in treating dementia patients is much like a psychiatric patient who may be psychotic, but who has written an advance directive when he or she is in a rational state of mind. If the patient goes into psychosis, that patient may declare he or she does not want a particular medication or other treatment — or even a particular physician to treat him or her. Brendel has written on this topic in two papers, one titled "The Ethics of Palliative Care in Psychiatry" in The Journal of Clinical Ethics1, and as one of four co-authors of a research paper on "The Use of Palliative Sedation of Existential Distress: A Psychiatric Perspective," published in November 2008 in the Harvard Review of Psychiatry2.
The first article addresses the case of a patient, "Margaret," who was in her 50s and "had developed a terrible dementia," Brendel tells Medical Ethics Advisor. "Margaret" had previously been a psychiatric nurse.
"Her kids [were] in their 20s…[and] had taken care of her for years, and she became incredibly combative; she always looked like she was in pain, but physically, she was in perfectly good shape," he recalls. "We couldn't find a problem with any organ except her brain."
Brendel says that several treatments were used, from a variety of medications to electroconvulsive therapy (ECT), but nothing worked.
"It looked as if she was in distress; she was sometimes assaultive on the unit, and ultimately the family felt that — and this was a woman who had written an advance directive, saying that she didn't want any kind of heroic care or anything like that, if she had a terminal illness," he says. "Ultimately, we did bring in a palliative care consultant, and she went to hospice."
According to the article on "Margaret's" case, the authors write, "her agitation and continual cries of distress suggested extreme pain and suffering. But the unknowable nature of this pain may have contributed to the discomfort with adopting a palliative care approach."1
The aging of the U.S. population and growing numbers of dementia patients suggest that psychiatrists, along with general medical practitioners and gerontologists, "will increasingly be faced with similar problems in the coming years," the paper suggests.
"Up to now, psychiatrists have been understandably reluctant to think of palliative care as a possibility for treatment-refractory agitation in dementia. But patients such as Margaret make it imperative that we entertain this option thoughtfully, that we heed real-event advance directives, and formulate treatment plans in collaboration with family members, clinical ethicists, palliative care clinicians, and specialists in related areas," the authors write.1
Advance directives an important tool
"The palliative care approach to dementia is further complicated by difficulties in establishing and implementing clear advance directives for patients with dementia," Brendel writes, along with co-author, Julieta Bleichmar Holman, MD.1
The Alzheimer's Association, based in Chicago, receives many calls from individuals or their families regarding advance directives among the 275,000 calls that its Contact Center receives annually, according to Beth A. Kallmyer, MSW, director of family & information services for the association.
"The Alzheimer's Association actively encourages people to set up advance directives," says Kallmyer, noting that it is important for patients and their families to take the time to discuss this option.
"Even as people get diagnosed earlier, one of the benefits is that they can participate in this [discussion]," she says. "As people participate and make their own decisions and are able to do that — that empowers them."
It also reduces the burden on the family as different treatments may be indicated as the disease progresses toward end-of-life care.
"If the person with the disease, for example, says, 'I do not want a feeding tube if I get to the point where I cannot swallow anymore' and makes that clear — and has the right advance directives in place — later on, when the patient is unable to communicate those wishes and isn't eating properly and isn't swallowing well, the family will not have to make the agonizing decision of, 'Do we put a feeding tube in, or do we not?'" Kallymer says. "That decision has already been made."
However, Brendel and Holman write that "Despite concerted efforts in recent years to encourage individuals to specify wishes for end-of-life care, most patients with terminal illnesses lack advance directives.
"Margaret's story underscores the need for continued public education on the importance of advance directives," they write.1
In fact, the authors write, the "unfortunate reality" about advance directives is that "they often go unheeded."
But Fins says that advance directives are binding under federal law under the Patient Self-Determination Act.
"Psychiatric advance directives are not perfect," Brendel tells Medical Ethics Advisor, "because clinicians may be put into a position where they have to figure out who is the real person here — is it the person who signed the psychiatric advance directive in a previous state of mind, or is the person I see right before me, who I need to treat now with respect?"
Mark Salzer, PhD, associate professor and director, UPENN Collaborative on Community Integration of Individuals with Psychiatric Disabilities at the University of Pennsylvania in Philadelphia, says psychiatric advance directives, for example, are "actually a nice tool — a nice way for patients to express their rights to make decisions about treatment." Part of Salzer's work is in the area of community integration for people with psychiatric disabilities, involving promoting self-determination and patients' rights.
He notes that advance directives can allow patients to determine everything from which medications they will or will not take to which physicians they will allow to treat them.
Although he acknowledges there are problems with psychiatric advance directives, especially in terms of implementation, he appreciates their value in empowering patients before they are ruled incompetent, as well as from a crisis-planning perspective.
"For some individuals who are hospitalized frequently, that can be helpful therapeutically," Salzer says.
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