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
"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
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
"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
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
Barrier: Not Knowing When the Time Is Right
"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
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.
Center to Advance Palliative Care (www.capc.org)
The Conversation Project (http://theconversationproject.org)
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.