Talking about advance care planning isn't the easiest thing to do, but it may be one of the most essential. Good advance care planning helps ensure that any health care treatment reflects patients' values, goals, hopes, and fears. And physicians and patients don't need to dread these discussions, according to Jeffrey T. Berger, MD, FACP, chief of the division of palliative medicine and director of clinical ethics at Winthrop University Hospital in Mineola, N.Y.
“Rather than a conversation about doom and gloom, I view end-of-life conversations as an opportunity for patients to become empowered,” he said. “The role of the internist in these conversations is critical, because the internist already has a therapeutic relationship with the patient and should understand some of the intangibles about the patient that another physician can't know from reading a chart.”
Daniel P. Sulmasy, MD, PhD, MACP, associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago, believes these conversations are so important that he makes them a part of his initial history and physical examination with any new patient.
“Think about other preventive procedures like mammograms or colonoscopies. … Well, I try to engage in preventive ethics by talking about advance directives, or asking if they have anyone who would be able to speak for them in the event they are unable to speak for themselves,” Dr. Sulmasy said. “This information is critical, and by doing it during an initial visit it makes it a routine part of care.”
Results of a survey published in the American Journal of Preventive Medicine in 2014 showed that among almost 8,000 respondents ages 18 or older, only about 26% had an advance directive. The most commonly reported reason for not having one was a lack of awareness. Older respondents were more likely to have completed an advance directive.
However, advance care planning is not only for older patients or those with chronic or life-threatening illnesses; these conversations should also take place with younger patients, said Janet L. Abrahm, MD, FACP, the former chief of the division of adult palliative care at Dana-Farber Cancer Institute and Brigham and Women's Hospital, and professor of medicine at Harvard Medical School.
“Accidents happen, and they happen more often with young people,” Dr. Abrahm said. “It is good for your patients to have a health care proxy, someone who knows what their values are.”
Dr. Sulmasy agreed, adding that the people who end up needing advance care planning the most are the people who expected to need it the least.
“The cases with the most difficult end-of-life decisions are often in young people who get into trouble very suddenly,” Dr. Sulmasy said.
Starting the conversation
It's best to initiate a conversation about end-of-life care early on, before there is a pressing health care issue, experts said.
“If there is time, I always recommend having these discussions during a planned visit,” said Mary M. Newman, MD, MACP, assistant professor at Johns Hopkins University School of Medicine in Baltimore. “Planned visits work well because they give patients time to gather the documents they need such as an advance directive and a power of attorney for health care, and to review the [Medical Orders for Life-Sustaining Treatment] or [Physician Orders for Life-Sustaining Treatment] forms in advance so they are ready for the types of questions that are on it.”
Beginning in January 2016, CMS established billing codes for advance care planning services. CPT code 99497 is used for the first 30 minutes of advance care planning, including the explanation and discussion of advance directives; CPT code 99498 can be used for each additional 30 minutes.
Internists can also take advantage of certain opportunities within a patient's disease trajectory to initiate or review end-of-life preferences. If a patient is newly diagnosed with a chronic illness such as diabetes or heart failure, physicians should schedule a follow-up appointment to broach end-of-life questions, Dr. Sulmasy recommended.
Patients with diseases known to limit survival, such as class III or IV heart failure or later stages of chronic obstructive pulmonary disease, often have very unpredictable clinical courses. A patient can be hospitalized and very ill one day and back in the community at close to their prehospital baseline level of function the next.
“In patients with these difficult-to-predict diseases, any appointment after a hospital discharge should serve as an opportunity for [goals of care] conversations, because it is often difficult to predict when it will be a patient's last hospitalization,” Dr. Berger said. “It is an opportunity to familiarize the patient with the fact that they have a life-limiting disease. Rather than ignoring the overall prognosis and focusing solely on managing episodes of disease, physicians should help patients to recognize the broader trajectory that they have to face.”
Dr. Abrahm acknowledged that these conversations can be easy to miss after hospital discharge when physicians are focused on adjusting medications or getting caught up on details of the hospitalization.
“It does not always have to be the first visit after hospitalization, but it should occur soon after so that patients are still mindful of the things that happened there,” she said.
Another good opportunity to initiate end-of-life conversations is when a patient mentions the death of a relative or friend. This helps to pave the way for an open conversation about what the patient would want if he or she were in a similar situation, according to Dr. Abrahm.
Physicians should also keep patients' culture and religion in mind during advance care discussions. “Religion in medicine is often thought of as taboo or something we do not talk about,” Dr. Sulmasy said. “That is wrong, though, because patients often make these decisions in the context of their own religious views.”
Dr. Sulmasy said he will often ask a patient, “What role does spirituality or religion play in your life?” and allow the patient time to discuss those issues.
“For a lot of religious people, medical care centers around hope. Patients' families are faithful and believe that God can answer their prayers and perform a miracle,” Dr. Abrahm said. “Doctors have to keep in mind that miracles can take a lot of forms, allowing not necessarily for a patient to be cured but to be healed by no longer suffering.” She recommended turning to community clergy to provide support, noting that “In some cases, clergy can help families to understand what God can and cannot do for a patient.”
Dr. Abrahm said that in some cultures, more commonly Hispanic, Asian, or African-American, there is a family-oriented decision-making process.
“A physician may try to get the patient to make a decision about their care, but they have to realize that it does not always work that way,” she said. “Physicians should adapt and ask, ‘How do you make decisions? Who makes decisions in your family? Who should be present for a conversation about your health care?’”
Conversations about advance directives may seem less natural with younger patients than with older patients or patients facing life-threatening illness, but they are just as important.
“In my role as a general internist, I would approach advance care planning conversations with younger patients as merely a part of health maintenance,” Dr. Berger said. “I would normalize the content by including it in conversations about vaccinations, when to begin cancer screening, and then a question about who they prefer to be their decision maker if something happens to them.”
In fact, Dr. Abrahm said that focusing conversations about advance directives on the topic of identifying a health care proxy rarely meets with resistance among her patients.
“The primary care physician can help the young person identify a health care proxy and then speak with them about what kind of life would be acceptable—being in a wheelchair perhaps, but not in a state where they are not able to be awake and cognizant of their surroundings or having their lives maintained by artificial nutrition through a feeding tube,” Dr. Abrahm said.
Dr. Abrahm pointed out that internists speak with young, healthy patients about safety issues like wearing seat belts all the time and said that the topic of safety could serve as a natural segue to a discussion of certain situations that the patient might consider worse than dying, for example, sustaining serious head trauma or paralysis after a car accident.
“If I do meet resistance with this or other discussions, then I explore to discover the nature of the resistance and its causes, hoping to understand my patient better and their concerns,” Dr. Abrahm said. “Sometimes there is a misunderstanding that I can correct—DNR means that nothing is done for the patient even before they have died, for example—but sometimes information won't reverse mistrust in the system, or the absolute need of a young parent to do whatever it takes to be alive for their children.”
Drs. Berger and Sulmasy said they often point out the number of high-profile cases during the last 2 decades involving people in their 20s whose families were left to dispute appropriate end-of-life care, noting that this can help convince patients who are hesitant to have these conversations.
Resistance to the conversation is less common among older patients, experts said. In fact, some patients are relieved when a physician broaches the topic, according to Dr. Sulmasy.
If a physician does encounter resistance, Dr. Sulmasy recommended patience and persistence.
“One must bear in mind that the conversation can't be forced upon them, and that it often takes a number of visits,” Dr. Sulmasy said. “I will often reassure them that this is not just about approaching death, but in the spirit of prevention.”
Dr. Abrahm said that often any encountered resistance is related to making choices about which aggressive measures a patient would be willing to have to maintain their lives, for example, resuscitation.
“I find that patients have usually been asked: ‘Do you want everything done?’ to which the usual answer is ‘Yes,’ but the real question is ‘If (or when) you die, we can allow that natural death, or we can try to bring you back with a variety of medical treatments, all of which will include a tube into your lungs that will breathe for you, and be connected to a machine called a respirator,’” Dr. Abrahm said. “Some people will then say, ‘Oh, when I die, then that's it, but I want you to do everything you can to keep me from dying.’”
If patients are resistant to getting into the details of specific medical interventions, Dr. Sulmasy said that at the very least, he asks them to provide the critical information of whom they would like to speak for them in the event they become incapacitated.
However, when treating a patient with a life-threatening illness, there is “no beating around the bush,” Dr. Sulmasy said.
“One should sit down next to the patient and engage in a conversation that puts the decision into the context of caring for them as a whole person,” he said. “I ask them how they are doing with what's going on with them, how they are coping, how the family is doing, what fears they might have, etc., and only in that context do I broach questions about prognosis and ethical decision making.”
Dr. Abrahm said that sometimes patients with these chronic conditions will question why she brings up the topic of end of life given that they are currently receiving active treatment and noted that many patients think they have more time than they actually do.
“If I know that they are aware that their condition is far advanced, I ask if they want to know how much ‘good time’ they are likely to have left,” Dr. Abrahm said. “If they say ‘Yes,’ I give them a range and watch for their reactions, and grief. If they say ‘No,’ then I mention that for anyone at their stage of disease, we like to help them plan for both ‘roads,’ so that nothing is done that they wouldn't want done if their condition worsened.”
Dr. Berger and Dr. Abrahm also noted that palliative care specialists can also be helpful in end-of-life discussions.
“If an internist feels that there are complicated family dynamics or if they are uncomfortable having this conversation by themselves, they should call on a consultant,” Dr. Abrahm said. “Many physicians are not yet well trained in palliative care, and joining in a conversation with a palliative care consultant is a great way to learn.”