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Barriers to End-of-Life Care Conversations

By Jamie Santa Cruz

Although physicians recognize the importance of conducting discussions about their patients' end-of-life care options, few make concerted efforts to ascertain patient desires for future care and treatment.

As of January 1, 2016, physicians are eligible to receive reimbursement from Medicare for providing end-of-life care counseling to patients. But although reimbursement is available, a relatively small percentage of physicians are taking advantage of it to date. A new survey from the John A. Hartford Foundation in cooperation with the Cambia Health Foundation and the California HealthCare Foundation finds that many barriers remain in the way of advance care planning conversations, and physicians are often reluctant to initiate the discussions with their patients.1

Of the physicians surveyed, all of whom regularly treat older adults, there was near unanimous agreement that end-of-life care counseling is of value. Almost all (99%) said it is important for physicians to have advance care conversations with patients, and 95% expressed support for the new Medicare benefit reimbursing providers for the discussions. Three-fourths of the physicians also indicated that the new benefit would make them more likely to have such conversations with patients.

But while physicians theoretically recognize the value of end-of-life care conversations, there is a gap between their beliefs and their practice: Only 14% of those surveyed have actually initiated such a conversation with a patient and billed Medicare for it since the new benefit became effective.

The findings are in line with multiple previous surveys showing that physicians are reluctant to talk about end-of-life care. A 2014 study found that only 12% of providers were following American Heart Association recommendations to discuss end-of-life care with heart failure patients at routine annual visits.2 Similarly, a 2010 study found that most providers put off discussions of advance care planning even with terminally ill patients as long as those patients were still feeling well.3

Better Training Needed
Lack of training is a significant obstacle to end-of-life care conversations. About two-thirds of physicians in the new survey said they have never received any training specifically on how to conduct such discussions. Furthermore, close to one-half reported frequently or sometimes being unsure of what to say when talking with patients about end-of-life matters.

"There's an enthusiasm and support for the new reimbursement," says Terry Fulmer, PhD, RN, president of the John A. Hartford Foundation, "but the other thing that the report showed us is that there is some uncertainty. […] So we want to make sure we get [physicians] comfortable with what they need to be talking to their patients about."

Training positively impacts physician willingness to begin the conversations. Those who have received training were more likely to report having advance care planning discussions with patients (19% vs 12%), and they were also substantially more likely to find those conversations rewarding (46% vs 30%).

Medical schools need to take the initiative on training, Fulmer says. To date, the topic of end-of-life care counseling "has not been systematically addressed in the curriculum," but she says the survey data and the clear physician interest in training should inform curricula revisions.

Physicians also need ongoing training after graduation, however. "There's a lot of content in medical schools, but then it has to be reinforced once you are practicing," Fulmer says. Practice sites and health systems need to provide improved support for physicians, such as by incorporating trigger questions into the electronic health record asking doctors whether they have had an end-of-life conversation with patients. They also need to promote ongoing education, such as the training provided through resources like Vital Talk, a nonprofit with the mission of nurturing healthier connections between patients and clinicians, and the Center to Advance Palliative Care, which has an annual meeting where physicians can receive ongoing education on the topic.

"We know that as people become more comfortable with the content and with the process of asking these end-of-life questions, they are more likely to do it—they have a level of confidence about it," Fulmer says.

Barriers to Advance Care Planning
In addition to the general issue of lack of training, several other specific barriers to end-of-life care conversations are evident in the survey results. Lack of time is the biggest perceived barrier, with two-thirds of respondents citing this as an issue that "frequently" or "sometimes" stands in the way of an end-of-life care conversation. Other common reasons for avoiding the conversations included disagreements between family members and the patient, uncertainty about the right timing for a discussion, and fear that the conversation would be uncomfortable.

Besides these physician fears and attitudinal barriers, structural barriers to advance care planning are also evident in the survey. Specifically, the majority of physicians (67%) report that their practice or health system lacks a formal system for assessing patients' end-of-life care wishes. A significant minority (41%) also say that either there is no place in their electronic health records indicating whether the patient has an advance care plan or they are unsure. Both of these structural impediments are associated with a reduced likelihood of physicians engaging in end-of-life care planning with patients.

Overcoming the Barriers
Despite the impediments they encounter, the majority of physicians (75%) continue to perceive that the responsibility for talking with patients about end-of-life matters falls on them—not on patients or another health care provider. Anthony Back, MD, a professor of medicine at the University of Washington and the Fred Hutchinson Cancer Research Center, says physicians are right to view the responsibility as theirs.

"Physicians are the professionals who can put together the technical issues about the medical care with the patient's preferences and goals and values," says Back, who is also executive director of Vital Talk. "To have a good conversation, you not only have to know what the medical situation is and know what's possible, you also have to know the patient—who that patient is and what they're hoping for and what their life is about. So it's not something you can easily outsource."

As for how to overcome the various uncertainties physicians feel regarding end-of-life care discussions, Back suggests the following strategies:

Barrier: Limited Time
It's true that physicians often cannot manage an hour-long conversation all at once, but there is no need to try, Back says. Instead, he recommends breaking up the conversation into multiple chunks. If there are only a few minutes available, for example, a doctor can ask patients whom they would want as a surrogate decision maker in the event that they were suddenly unable to make a decision for themselves. That's a decision, he says, that most patients can make in just a few minutes, but it's an important first step.

If a patient is seriously ill, a more extended conversation is in order, but not all of it needs to fall on the physician's shoulders. Doctors can tell patients they'd like to start the conversation about goals of care but can indicate that another staff member, such as a trained nurse or social worker, will follow up and continue. Then the whole team can loop back. "That's a way to distribute the conversation over a couple of different professionals, but the doctor has played the important role of endorsing the importance of the conversation," Back says.

Barrier: Disagreement Between Family Members and the Patient
In a case where the patient's wishes don't align with those of family members, it is often best to bring in outside support in the form of another trained professional. A social worker, for instance, can do some groundwork in helping resolve disagreements between the patient and the family. "The physicians don't have to do all the conflict resolution themselves," Back says.

Barrier: Not Knowing When the Time Is Right
The reality, according to Back, is that the time is always too early or too late, and thus physicians cannot wait for the "right" time to open a conversation about the end of life. Instead, doctors should concentrate on shifting from a reactive approach (dealing with whatever just happened) to a proactive approach (preparing patients for what may be upcoming).

"Figure out what's the piece of communication you need to do with the patient so the patient is prepared for the next thing that could happen," Back says. "Preparation means you have to introduce something like an advance care directive."

A caveat: Introducing a topic such as advance care planning will likely make patients nervous, but that's not a reaction physicians should fear. To help alleviate patient anxiety, Back suggests a response such as, "It sounds like you're worried. Can you share with me what you are worried about?" It is also helpful, he says, for physicians to let patients know that they talk about advance care planning routinely with all patients.

Barrier: Fear That Patients Will Give Up Hope
To overcome this barrier, approach the concept of hope in a broader way. "Find out about all the things a patient is hoping for," Back says. When you ask about hopes, "often patients will start with one, but it's important to find out the whole portfolio of hopes a patient has. Then show that your medical care, the things you are recommending, are things that will support their hopes. You have to align your treatments with what the patient is interested in."

For physicians who continue to feel uncertainty, Fulmer says, the key message is that there are resources available to provide assistance. "Nobody has to feel alone in this," she says. "The most important thing that physicians can do is reach out when they need help."

— Jamie Santa Cruz is a freelance writer based in Englewood, Colorado.


Related Resources
Back A, Arnold R, Tulsky J. Mastering Communication With Seriously Ill Patients: Balancing Honesty With Empathy and Hope. 1st ed. New York, NY: Cambridge University Press; 2009.

Center to Advance Palliative Care (www.capc.org)

The Conversation Project (http://theconversationproject.org)

VitalTalk (vitaltalk.org)


1. John A. Hartford Foundation, Cambia Health Foundation, California HealthCare Foundation. Physicians' views toward advance care planning and end-of-life care conversations: findings from a national survey among physicians who regularly treat patients 65 and older. http://www.jhartfound.org/images/uploads/resources/ConversationStopper_Poll_Memo.pdf. Published April 16, 2016. Accessed May 5, 2016.

2. Doctors reluctant to discuss end-of-life care with heart failure patients. American Heart Association website. http://newsroom.heart.org/news/doctors-reluctant-to-discuss-end-of-life-care-with-heart-failure-patients?preview=5988. Published June 4, 2014. Accessed February 8, 2015.

3. Keating NL, Landrum MB, Rogers SO Jr, et al. Physician factors associated with discussions about end-of-life care. Cancer. 2010;116(4):998-1006.