While there's no way to predict what a patient's death will be like, physicians can ensure that his or her wishes are carried out to the greatest extent possible by discussing advance care planning.
Timothy E. Quill, MD, FACP, Georgia and Thomas Gosnell Distinguished Professor in Palliative Care and professor of medicine, psychiatry, and medical humanities in the palliative care division at the University of Rochester School of Medicine in New York, separates advance care planning scenarios into 2 general categories, advance directives and current care directives.
“Advance directives ask patients to anticipate what kinds of medical treatment they would want if they lose the ability to speak for themselves and make decisions in the future, as with Alzheimer's or other conditions that cause cognitive impairment,” Dr. Quill said. There are 2 main kinds of advance directives: 1) living wills where patients set out particular treatments they would want or not want if they lose the ability to make decisions in the future, and 2) health care proxies where patients designate a person to represent them for medical decisions if they cannot participate themselves in the future.
“Current care directives cover the kinds of treatments one would and would not want if they develop an acute medical problem right now. Would they want to have CPR or breathing tubes? How aggressive should treatment be in an emergency?” Dr. Quill said. A new potentially life-threatening diagnosis, complications from chronic illness, or a general worsening of health might prompt this discussion, he added. These directives are often captured on Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) forms.
Although it's ideal for all healthy adults to have an idea of what they would want if they cannot make decisions for themselves, it's most efficient for physicians to introduce the need for advance care planning when patients are 55 to 65 years old, said Bernard Hammes, PhD, director of medical humanities and medical director of bereavement and advance care planning services at Gundersen Health Services in La Crosse, Wis.
“To have those discussions with every patient wouldn't be possible, effective, or appropriate,” Dr. Hammes said, but talking to patients in late middle age during an annual visit, for example, is more logistically reasonable.”
At Gundersen facilities, physicians start the conversation, but other professionals provide assistance and go in-depth with patients.
“We learned early on that for these conversations to be helpful, they take an average of 30 to 45 minutes, so we came up with the concept of training social workers, nurses, and sometimes chaplains to be advance care planning facilitators,” said Dr. Hammes. “The planning process is largely conducted as a team that includes the physician.”
It would seem the team approach works. As part of a study appearing in the July 2010 Journal of the American Geriatrics Society, Dr. Hammes and his colleagues examined the medical record and death certificates of 400 adults who died in 2007 and 2008 in various facilities in different health systems in La Crosse (hospice programs, nursing homes, hospitals, assisted living facilities, and home health agencies. Since this was a community study, researchers were often looking at records at multiple health organizations for each subject.) They found that 96% had either some type of advance directive or a POLST in place at the time of death. Yet according to the results of 2 surveys that included more than 7,900 adults nationwide and were published in the January 2014 American Journal of Preventive Medicine, only 26% of adults have such directives.
A more practical point that physicians, and primary care physicians in particular, have to contend with is knowing which patients are due for the talk and remembering to bring it up, Dr. Hammes said. At Gundersen, prompts are built into the electronic medical record, but physicians in independent practices or smaller practices may not have the resources for that. Fortunately, there are low-tech ways to cue both physician and patient, Dr. Hammes said.
“It could be as simple as a medical assistant identifying patients at the beginning of each day, putting advance care planning materials in the exam room, and alerting patients that it will be a topic of conversation during the visit when they show them in,” Dr. Hammes said. Once a physician introduces the topic, he or she can refer the patient to a nurse or assistant on staff who can answer the patient's questions.
Elderly patients and patients in declining health, with complications of chronic illness, in treatment for cancer, or coming to terms with slim odds, have decisions to make. The physician's role in discussing advance care planning with these patients should expand to incorporate knowledge about the patient's medical condition and prognosis, said Dr. Quill.
“We have clinical experience, we've done the reading, and we know the about the patient's prognosis and the benefits and burdens of particular treatments. Here's where we should help patients take advantage of our expertise so they can make an informed decision,” he said.
He suggested that physicians eventually ask if a patient wants their recommendations about the best path given what they know about the patient and about the disease process and prognosis. Such recommendations generally enhance rather than undermine patient autonomy and allow patients to take full advantage of the physician's expertise.
When patients seek his input, he couches it in terms of his own experience. “I'll say, ‘Given what I know about your disease and other patients I've taken care of with it, here's my impression of the course I think you're taking.’”
One way to help patients make decisions is to help them envision the clinical possibilities.
“Set up the scenario, and ask patients if they would want to remain alive with current technology, considering how it works and what condition they'll be in, when there is really no chance that doctors could actually improve their condition,” said Thomas Magnuson, MD, associate professor in the department of psychiatry at the University of Nebraska in Omaha. “Some may still say yes, even when faced with futility, but it has to be spelled out in certain situations that physicians can't do everything.”
“The plan is not to limit treatment, but to help people understand the progression of their illness and what may be coming for them,” said Dr. Hammes. “The question is about outcomes, and which outcomes would be so bad that we would change the goals of care [from life-saving to palliative].”
The single most important thing about advance care planning is to encourage patients to talk to their loved ones about their preferences and values should they one day not be able to speak for themselves about health care decisions, said Lois Snyder Sulmasy, JD, director of ACP's Center For Ethics and Professionalism.
“Physicians should raise this routinely—early and often—in the patient-physician relationship, and have these conversations with patients as well, but the most good comes from patients thinking aloud and talking about their wishes and values with those loved ones who might one day speak for them,” she said. “Many patients never document their wishes in a written directive or their directive may not address issues that ultimately arise; but they may appoint a proxy who can authentically speak for them, or someone close to them may end up serving as surrogate by default.”
ACP offers patient education materials on end-of-life care, include on surrogate decision making, such as Patient Education and Caring: End-of-Life (PEACE) Brochures.
The reluctant patient
Dr. Quill said the advance directive discussions with healthy patients tend to be easier to initiate than the current care discussions about plans for managing acute medical events in those whose health is deteriorating.
“During an initial or well visit, you can tell the patient that you talk to everyone about advance directives because you want to know how they feel about medical treatments and what they would want if they lose the ability to speak for themselves in the future,” he said. “You can provide them with some materials and forms and give them a chance to think it over before you talk again.”
At Gundersen, physicians use motivational interviewing. “These conversations have the goal of changing behavior [to get the plans in place], and it's not much different than motivating a patient to lose weight or stop smoking,” said Dr. Hammes.
Sometimes this means repeating the message several times. “Even when you initiate the conversation, it results in immediate interest in only about half of patients, so like other lifestyle changes, don't expect that because you do a good job of introducing the idea that your patients will jump on board. It often takes months, sometimes years, to move people from contemplation to actually doing something,” Dr. Hammes said.
The discussion about potentially setting limits on current emergent or potentially life-saving treatments is tougher, especially when patients are confronted with a serious, life-threatening diagnosis, Dr. Quill said. “The prospect of death is very real, and you have to talk about prognosis and the limits of what medicine can do. It's often an emotional discussion, but it's critical to have because aggressive treatment is the default and the patient may not want that,” he said.
Dr. Magnuson suggested couching the discussion in terms of empowerment. “Propose advance care planning as something the patient can control at a time when they might lose control over other things, like if they have cancer and don't respond to treatment. Stress that it's a decision to make for themselves and not leave it to their families.”
Dr. Hammes agreed, noting that if the patient doesn't take on the responsibility, the family may be faced with decisions that leave serious emotional scars.
“Sometimes the conflicts are so tremendous it tears families apart permanently. But that's avoidable,” he said. “Planning will help the family come through it together and know they did the right thing. They will be sad about their loss, but they won't have any guilt over decisions they made. It's really a gift the patient gives them.”
Mary Butler, PhD, MBA, assistant professor of health policy and management at the University of Minnesota School of Public Health in Minneapolis, cautioned physicians that discussing advance care planning, whether in general or for acute needs, requires both sensitivity and diplomacy. “These conversations require the person who is facilitating to be sensitive to all kinds of different philosophical stances—religious, cultural, and individual values and beliefs,” she said.
She added that physicians should be aware of their own thoughts and state of mind when broaching the subject.
“Talking about this is a lot to ask of physicians when their training is to heal and preserve life,” Dr. Butler said. “It also requires meeting a patient where the patient stands on the matter, and that's tough to do when a doctor is stressed out, tired, busy, or distracted, as can be the case in a clinic. There might be days when it's better to just not go there, and approach it another time.”
It's one thing for patients to know what they want and put it in writing. It's another thing entirely for all clinicians who come into contact with the patient to receive a copy of the resulting directive. The process depends on state regulations, whether the practice is part of a larger health care system like Gundersen, and the resources available to the physician.
“Often the document we receive includes medical orders that are signed by a physician, nurse practitioner, or, in some states, a physician's assistant. The forms stay with the person at various points of care like the nursing home or doctor's office and would go with them in the ambulance and [get] handed off to emergency department staff,” said Dr. Hammes.
Dr. Quill said that while all clinicians potentially caring for the patient should have a copy of all pertinent documents that have been completed, including those drawn up by attorneys, it's a good idea for patients to carry a miniaturized copy of their advance directives and current care directives in their wallets. If the patient's health care system has an electronic medical record, these documents should be scanned in. It is also important that all close family members be made aware of the documents and their content. “Given the current fragmentation in medicine, this increases the likelihood that the patient's wishes and values will be honored in a medical emergency, especially after patients have made the effort to make them clear in writing,” he noted.
Despite that caveat, Dr. Magnuson said he is hopeful about the future of advance care planning in medicine as young physicians come up through the ranks. “There is more interest in end-of-life issues and advance care planning than there was 20 years ago. It's the single biggest paradigm shift since I was in med school,” he said.