Executive Summary
Physicians played the biggest role in whether terminally ill patients were referred to hospice care, according to a recent study. Some reasons why many fail to refer patients to hospice include the following:
- Providers often wait for the patient and family to bring up hospice.
- Physicians can’t accurately estimate patients’ survival.
- Physicians lack training in end-of-life discussions.
Physicians — not age, race, gender, or where patients lived — played the biggest role in whether terminally ill patients were referred to hospice care, according to a recent study.1
Researchers focused on patients who died with a diagnosis of poor-prognosis cancer from 2006–2011, for whom palliative treatment and hospice would be considered the standard of care. The proportion of a physician’s patients who were enrolled in hospice was a strong predictor of whether that physician’s other patients would enroll in hospice.
“In some ways, it makes a lot of sense that physicians matter; part of our job is to offer advice,” says Ziad Obermeyer, MD, the study’s lead author and an assistant professor at Harvard Medical School in Boston.
Many physicians struggle with discussing end-of-life care with patients. “Some physicians are good at talking about end-of-life matters, but most of us aren’t,” says Obermeyer. “So it’s surprising that the best predictor we know of whether a patient will enroll in hospice is the particular physician they see.” The following changes are needed to increase referrals to hospice care, he suggests:
- Physicians need better estimates of patients’ survival in order to counsel them effectively.
“It’s really difficult to predict the future and understand how long someone has to live,” says Obermeyer. Advanced analytic techniques could improve predictions of survival. “These methods have worked incredibly well in the private sector, but haven’t yet been widely applied in medicine,” he says. “I think this could make a huge difference.”
- Doctors need to take responsibility for having end-of-life conversations.
“They are hard, no question. But they are incredibly important,” says Obermeyer. “Training is needed, in medical school or residency, as well as for practicing physicians.”
- Policymakers and administrators need to give doctors feedback on their end-of-life discussions.
Doctors typically don’t know how they are doing compared to their peers in their own institution or nationally. “Better data and monitoring can help doctors understand their needs for focused training and interventions,” says Obermeyer.
Patients and family typically assume that healthcare providers will let them know when the time is appropriate to consider a change in treatment focus. Providers often wait for the patient and family to bring up the desire to stop certain treatments or investigate hospice.
“This leads to a ‘waiting game’ that pushes critical discussions of goals and values off, for far too long,” says Rebecca Benson, MD, PhD, medical director of the Pediatric Pain and Palliative Care Program at University of Iowa Children’s Hospital in Iowa City. Benson is also medical director for clinical ethics and director of the ethics consult service at University of Iowa Hospitals and Clinics.
Patients may worry that if they bring up hospice, the provider will be disappointed that they want to stop “fighting.” “Patients often deeply value their relationship with the healthcare team that has helped them through their illness,” says Benson. “They may grieve the anticipated loss of those relationships if they choose a different approach.”
Healthcare providers sometimes fear if they bring up hospice, the patient or family will feel they’re giving up or abandoning them. “Ideally, the provider should take the lead in letting the patient know their options,” says Benson. “They have the medical expertise to guide the timing and topics of the conversation.”
A physician who lacks the ability to competently share challenging information with patients is not likely to bring up hospice. “If she does, it is not likely to go over well,” says Benson.
Here are some approaches Benson uses to introduce the idea of hospice to patients and family:
- She asks several key questions to get a sense of their understanding about the illness, what they are hoping for from treatment, and what worries they have about the future.
“If I start a conversation by summarizing their condition as I see it, I have set the agenda for the visit,” explains Benson. Instead, she asks, “What do you understand about where things are with your illness now?” or “How have things changed for you in the past few months?”
“I get a sense of their prognostic awareness,” she says. “Often, they will begin to bring up their hopes and worries in a way we can explore together.”
- She uses a combination of “hope” and “worry” phrases.
Benson might say, “I hope the treatment works, too. But I worry, given what has happened in the past, that we may have to consider what to do if your health gets even worse.”
- She often asks about goals of care and expectations of treatment.
“It is important to realize that even if the primary goal is to be cured, it is acceptable to ask about what else is important to them,” says Benson. The patient might talk about being comfortable, staying at home, being able to interact with loved ones, or living as long as possible.
“This helps the provider to learn about what tradeoffs they might be willing to make — or not — in the future,” says Benson.
- Initially, she brings up hospice circumstantially, without recommending it to the patient at that time.
Benson recounts how hospice helped another family solve a problem or get support. “This helps patients and families get over the shock of hearing the word ‘hospice,’” she explains. “At the same time, it lets them know I am open to talking about it.”
In future conversations, Benson brings up hospice, but without pressing the issue. She clarifies that the patient and family have a realistic understanding of illness progression.
“When the time comes that I really feel it is time to make a referral, it is likely that the patient and family will understand that I am recommending this because I feel it will help them meet their goals,” says Benson.
REFERENCE
- Obermeyer Z, Powers BW, Makar M, et al. Physician characteristics strongly predict patient enrollment in hospice. Health Aff 2015; 34(6):993-1000.
SOURCES
- Rebecca Benson, MD, PhD, Medical Director, Clinical Ethics, University of Iowa Hospitals and Clinics, Iowa City. Phone: (319) 356-7880. Fax: (319) 384-6295. Email: [email protected].
- Ziad Obermeyer, MD, Assistant Professor, Harvard Medical School, Boston, MA. Email: [email protected].
Physicians played the biggest role in whether terminally ill patients were referred to hospice care, according to a recent study.
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