Expert Commentary

Covering stories about palliative care: 4 tips for journalists

Tip #1: Know the differences between palliative care and hospice.

Palliative care
(The Noun Project)

The COVID-19 pandemic has brought a surging demand for palliative care clinicians to help care for critically ill patients in hospital emergency rooms across the U.S. Palliative care is a subspecialty of medicine that focuses on treating seriously ill patients to maximize their quality of life by providing relief from pain, stress and other symptoms.

Historically, palliative care specialists don’t typically work in emergency rooms. However, these clinicians are experts in having “goals of care” conversations, which have become crucial in emergency rooms overwhelmed with COVID patients. In a goals of care conversation, clinicians talk to the patient or family members about their medical situation and ask questions about what kind of care the patient would want if they get sicker with COVID. One COVID-era study showed that many elderly patients who are critically ill with the virus do not want aggressive life-sustaining measures, including intubation and CPR. A goals of care conversation allows patients to have a voice in their own care and prevents them from enduring aggressive medical interventions that are incompatible with their wishes and values.

Palliative care doctors were embedded in the emergency department at Massachusetts General Hospital during the first surge of COVID-19 patients. Journalist’s Resource spoke to Dr. Vicki Jackson, chief of the division of palliative care at Massachusetts General Hospital who took ten hour shifts in the emergency department to care for COVID patients.  “Some people came in saying, ‘There’s no way in hell I want to be on a ventilator.’ That allowed us to be clear in our discussions about whether intubation would be beneficial,” says Jackson. Patients who refuse intubation and CPR are still given therapeutics with the hope that they will recover.

Journalist’s Resource also interviewed Dr. Diane Meier, director of the Center to Advance Palliative Care, based at the Icahn School of Medicine at Mount Sinai Hospital in New York.  She notes that palliative care clinicians are doing the crucial work of connecting with families when doctors in the intensive care units and emergency departments don’t have time. “You have one patient after another patient and you don’t have time to call the family. That’s what the palliative care teams are doing, that human communication aspect of medical care. That’s what helps patients and families feel cared for and cared about. And that sounds touchy feely, but it’s not. It’s really important.”

Here are several tips for reporting stories about palliative care, based on conversations with Meier and Jackson:

1. Know the differences between palliative care and hospice.

There is a persistent myth among patients and the public that palliative care is the same as hospice care, or that it is appropriate only for patients at the end of life. Some doctors also make this mistake. It’s important to be clear about what palliative care is and what it does for patients. Palliative care is a type of medical care for people with serious illness. It focuses on bringing relief from the symptoms and stress of illness with the goal of improving the patient’s quality of life. A patient with a serious illness can be referred to palliative care at any point in the disease trajectory, including at the time of diagnosis. Palliative care is offered alongside curative treatments. For example, a patient with serious cancer can see a palliative care specialist while they are receiving chemotherapy.

Hospice, by contrast, is a type of end-of-life supportive care offered to patients who are terminally ill and believed to be in the last six months of life. Patients have to be medically eligible for this care, which means that their primary care doctor or specialist needs to attest that the prognosis is likely less than six months.

In many insurance plans, including Medicare, patients are eligible for hospice only if they have stopped receiving curative treatment. So, a cancer patient entering hospice is unlikely to be receiving chemotherapy, but might be eligible for palliative radiation because this can help relieve pain.

2. When explaining palliative care to your audiences, avoid direct comparisons to end-of-life care or hospice.

It’s tempting to report that “palliative care is not the same as hospice,” which is true, as noted in the tip above. However, this sentence structure reinforces that pairing in the minds of readers, viewers and listeners, says Meier. “When you put those two things together in one sentence, that’s what people remember,” she says.

Meier recommends stressing what palliative care is rather than what it isn’t. “You can say, ‘Actually, palliative care is delivered at the same time as curative and life prolonging treatment in an effort to maximize quality of life,’” she says.

3. Keep in mind that palliative care isn’t equally available everywhere.

CAPC publishes a report card online that grades the availability of palliative care programs in hospitals by state. You can search for your state to see how it rates. This report card also describes palliative care nationwide, showing that the prevalence of palliative care is growing. According to the most recent report, published in 2019, 72% of U.S. hospitals with more than 50 beds have a palliative care team. This is up from 67% in 2015. Availability is also limited in rural areas. Just 17% of rural hospitals with 50 or more beds report a palliative care program, according to CAPC.

“The other message is that the public needs to hear is that very often their physicians and other clinicians don’t know what palliative care is and don’t understand its benefits,” says Meier.  “Patients and families have to advocate for themselves.”

CAPC has an online directory where patients (or reporters) can type in their zip code and find palliative care providers near them. CAPC also has a press kit with more information on palliative care and the organization.

For investigative reporters, there are opportunities to explore how and whether the COVID-19 pandemic has affected palliative care in their local hospitals. While some hospitals have increased their palliative care by embedding specialists in their emergency departments, Meier says, “we’ve also heard a few stories about palliative care departments being defunded during the first surge when elective surgeries were cancelled. But we don’t have any quantitative data on that.”

4. Explore racial and ethnic disparities in palliative care.

There is not yet a lot of academic research on racial and ethnic disparities in palliative care. A 2018 systematic review, published in Families in Society: The Journal of Contemporary Social Services, looked at 22 different studies on this subject, but noted that the studies often conflated palliative care with end-of-life care. It identified several observed barriers for non-white patients to receive this kind of care. The first was financial. Patients feared they couldn’t afford another medical service or lacked insurance. The second was a cultural preference for aggressive life-sustaining measures. Some studies found that patients are treated at hospitals or in regions of the country that don’t have palliative care available. One study found that stroke patients of any ethnicity were less likely to receive palliative care if treated at a mixed or majority minority hospital relative to those at majority white hospitals. Two studies looking at Native Americans/Alaskan natives found that rural health systems were underresourced for culturally competent and accessible palliative care services for this population. Other patients have never heard of palliative care or mistrust the medical system in general because of their previous experiences with poor medical care. Other studies in this review pointed out that language barriers inhibit goals of care conversations, or documented cases in which family members felt that the provider who could have made a palliative care referral didn’t do so because of racial bias.

Researchers did note that four of the studies included in this review found no racial disparities in the use of palliative care, per hospital chart reviews.

COVID-19 has prompted palliative care to address racial and economic inequities. “That’s the other big piece that became super clear,” says Jackson. “For us, we had to create a Spanish language palliative care team because the vast majority of our critically ill patients were Spanish speaking.”

The CAPC website has several resources outlining how the profession can address health inequities in palliative care. These include information on how telemedicine can exacerbate the disparities in health care delivered to patients living in poverty, and a communication guide for clinicians to help them work better with patients and families who have experienced racism in previous health care encounters.

For more on health care amid the pandemic, see these tips for covering Medicaid.

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