Advance directives covering dementia care: Patient preferences can change over time
Ethical challenge to comply with patients prior — or current — wishes
Advance directives covering dementia care are complex, according to Rebecca Dresser, JD, Daniel Noyes Kirby Professor of Law and Professor of Ethics in Medicine at Washington University in St. Louis, MO.
Although the mental capacities of individuals with a dementia diagnosis diminish over time, she notes, they remain able to experience benefits and harms and maintain relationships and enjoy activities for much of that time. "These considerations can make it difficult for competent persons to anticipate the treatment decisions that would be best for them in the future," says Dresser.
At the bedside, clinicians, designated proxy decision-makers, and informal surrogates may face conflicts between what the patient once requested in a directive and what seems best for the patient in his or her current situation.
"Many of the things that are important to them as competent persons might not matter to them as dementia patients," Dresser says.
Bioethicists can help clinicians and families make treatment decisions that respect a patient’s previous competent wishes, says Dresser, while giving adequate protection to the vulnerable and dependent dementia patients before them.
Individuals making advance directives don’t always take into consideration that their preferences can change over time.
"Bioethicists can raise these issues with people making advance directives, and give them a realistic sense of the control that directives offer over future care," says Dresser.
Few hospices have VSED policies
The use of advance directives to indicate what a patient wants at a later point in time, when he or she no longer has decision-making capacity, is "problematic" when it comes to voluntarily stopping eating and drinking (VSED), argues Timothy Kirk, PhD, assistant professor of philosophy at the City University of New York-York College.
"On the one hand, it seems to fit in with how we use advance directives already," he says. Many patients indicate in an advance directive that they don’t wish to be put on a ventilator, for instance. Patients may believe they should be able to do the same thing with VSED.
Patients hastening death by VSED is not a new issue, notes Kirk. "This is one of the oldest ways people have used to die more quickly. Given that, it’s surprising that there isn’t more public discussion about it," he says.
Kirk is chair of the National Hospice and Palliative Care Organization’s Ethics Advisory Council and chair of the American Society for Bioethics and Humanities’ Hospice and Palliative Care Affinity Group. "In states where aid in dying is not legal, VSED has become one of the primary ways that advocacy groups counsel folks to die because it’s not illegal," he says. "I suspect the practice is a lot more common than we realize."
Kirk says VSED differs from declining more complex treatments because very few dementia patients do not have the capacity to decide whether they want to eat or drink. "Decision-making capacity is always evaluated relative to specific decisions that need to be made," he explains.
Patients with dementia may not have the capacity to understand the risks and benefits of a complicated surgical procedure. But even people with moderately advanced dementia understand whether they are hungry or not, says Kirk, and can make those decisions even if they’ve lost the capacity to make more complicated decisions.
"It’s usually only in the most advanced stages of dementia that people can lose the capacity to know whether or not they want to eat or drink," says Kirk. "If the patient has the capacity to make a decision now about eating or drinking, that should override any prior wishes."
There is also a significant question regarding the extent to which using advance directives to begin VSED in dementia patients is voluntary. "By definition, VSED is a voluntary course of action," says Kirk. "If a patient is sufficiently incapacitated such that his advance directive comes into effect regarding eating and drinking, it is not clear to me how withholding food and drink from him — even if this was a prior expressed wish — is voluntary."
Kirk estimates that only a handful of hospices have policies on VSED, and is unaware of any existing case law on this issue.
"There is very little guidance in the law and the literature on this," he says. "We also don’t know how many people are putting clauses like this in their advance directives. In 10 years, we may see a wave of these clauses."
Disincentives to respecting patients’ wishes
Kirk hears of several cases a year of patients whose advance directives indicated they would not want a feeding tube inserted, and nursing homes insert them anyway. "There are individual clinicians who don’t respect patients’ wishes involving medical procedures that are much higher risk than VSED," says Kirk. "So it’s not hard for me to imagine that a facility would not honor that piece of their advance directive."
A patient’s right to refuse a medical procedure is uncontested in terms of the law, and is a well-established right, but feeding tubes are nonetheless occasionally inserted against a patient’s will. "It still happens for any number of reasons — because a family member insists, or maybe the nursing home is owned by a religiously affiliated organization," says Kirk.
Honoring patients’ stated wishes is a "settled question" in the world of health care ethics, says Kirk. This isn’t necessarily the case elsewhere.
"Outside that world, for many people who run hospitals and nursing homes, providers sometimes feel comfortable evaluating whether patient preferences should be followed," he says. Providers want to do the right thing, but they are managing competing pressures. "There are some disincentives out there to listening to patients’ wishes," says Kirk.
Nursing home providers may be concerned that their quality indicators will be negatively impacted if they don’t insert a feeding tube and the patient loses weight. This comes from a misunderstanding about Medicare quality indicators which assess a patient’s weight loss to ensure that patients are getting appropriate care, says Kirk. The measures exclude patients who are losing weight because they decline a feeding tube.
"Unlike some regulatory bodies, Medicare is concerned about patients’ rights," he says. "But nursing home managers may not know that there is that exception in there."
Providers often believe they are at risk if they don’t do everything they can for a patient, including inserting feeding tubes. "I spend a lot of time as an ethics consultant correcting that misconception," Kirk says. "Providers’ perception of risk is often skewed. What puts your organization at risk is treating people without their consent."
• Rebecca Dresser, JD, Daniel Noyes Kirby Professor of Law/Professor of Ethics in Medicine, Washington University, St. Louis, MO. Phone: (314) 935-8769. Fax: (314) 935-5356. E-mail: Dresser@wulaw.wustl.edu.
• Timothy Kirk, PhD, City University of New York-York College, Jamaica, NY. Phone: (718) 262-5316. E-mail: email@example.com.