Palliative Care Widely Misunderstood by Patients and Professionals
Palliative care misconceptions appear to be both persistent and widespread. In one study, 60% of adults self-reported as knowledgeable about palliative care have at least one misperception. About one-third of participants equated palliative care with hospice care, and 14.5% believe palliative care requires the discontinuation of other treatments.1
In another survey of 3,504 adults, researchers found that 70% of respondents had never heard of palliative care. Roughly half of the participants were aware that palliative care and hospice are not the same. Fewer than one-third were aware that giving patients more time is not an explicit goal of palliative care.2 A third study revealed 55% of caregivers have never heard of palliative care.3
Jeffrey Peppercorn, MD, MPH, MGH, has researched palliative care awareness among patients with metastatic breast cancer. “The most common reaction to questions about palliative care is that patients don’t know what it is, or report that they’ve never heard the term before,” says Peppercorn, cancer center director of supportive care and survivorship at Massachusetts General Hospital in Boston.
Diane E. Meier, MD, says, “Inequity in access to quality palliative care is one of the biggest ethical lapses in the U.S. healthcare system.” There is considerable evidence that palliative care reliably reduces suffering, improves quality of life, and reduces the need for burdensome, risky, and costly interventions, notes Meier, director of the Center to Advance Palliative Care in New York. “Despite all these published data, palliative care remains available to only a small percentage of people living with serious illness who could benefit from it,” Meier laments. There are some possible reasons for poor access to palliative care:
• The public misunderstands what palliative care is and who can benefit from it. “Most people have never heard of it in the first place,” Meier observes. She says ethicists can convey an accurate definition of palliative care and its benefits and ensure patients and families are offered palliative care concurrent with usual disease treatment.
• Older clinicians who had no exposure to palliative care during their training are unaware of palliative care as a simultaneous care model. In this model, Meier explains, palliative care is “an added layer of support, delivered at the same time as all other appropriate disease treatment.”
Professional awareness is improving. New generations of physicians and nurses are training in teaching hospitals with well-established and high-quality palliative care teams. “Younger cohorts of clinicians know about it, understand it, and want it for their patients,” Meier reports.
• There are structural inequities in the U.S. healthcare system. “Where you live matters in terms of access to palliative care, as well as other elements of healthcare,” Meier notes. Lack of insurance, underinsurance, income inequality, racism, and geographic variability all play a part. “This is unethical, since equity means that patients with like needs receive like care,” Meier adds.
• There are no regulatory or accreditation standards. Currently, no regulatory or accrediting entities require palliative care teams to meet specific quality standards as a condition of accreditation or of payment. “The public is unprotected from random variation in access to this crucial aspect of medical care when they are most in need and most vulnerable,” Meier says.
It is well-established that many patients misunderstand palliative care. The same is true of healthcare providers. “Indeed, healthcare providers may feed into these misconceptions if they do not have a robust construct for how to define palliative care,” says Craig D. Blinderman, MD, MA, FAAHPM, director of Columbia University Medical Center’s adult palliative care service.
Despite increasing growth of palliative care programs, there remains confusion on when it should be integrated into care. There also is confusion on the difference between generalist-level palliative care and specialist palliative care. “I have also found that among my colleagues, it is rare that they truly understand the scope of palliative care and the sorts of conditions we can help manage,” Blinderman reports.
Many referring physicians still believe palliative care should be offered only near the end of life. “In fact, we can be integrated at any point in a patient’s disease or illness trajectory,” Blinderman offers.
Some providers are unaware of the benefits of palliative care in general. “These include increased survival, improved symptom control, less depression and anxiety, and better support for families,” Blinderman adds.
Late referrals due to poor understanding of the role and scope of palliative care can result in needless suffering and worse outcomes. “This, arguably, is in violation of the principle of beneficence,” Blinderman suggests.
Failing to involve palliative care, or doing so late in the patient’s disease course, can lead to unwanted care. “This violates the principle of nonmaleficence — or at least not providing goal-concordant care,” Blinderman says.
Ethicists can help by ensuring hospital policies include screening seriously ill patients for unmet palliative care needs. For neurologically impaired or critically ill patients without decision-making capacity, hospitals should allow clinicians to treat pain and other symptoms at the end of life if they believe it is appropriate to do so (without requiring informed consent from surrogates or family members).
Ethics consult volume has decreased as palliative care has increased, Blinderman notes: “This suggests that palliative care teams may mitigate conflicts between patients, families, and providers at the end of life.”
- Cheng BT, Wangmo T, Hauser JM. Patterns of palliative care beliefs among adults in the United States: Analysis of a national cancer database. J Pain Symptom Manage 2019; Aug 10. pii: S0885-3924(19)30447-6. doi: 10.1016/j.jpainsymman.2019.07.030. [Epub ahead of print].
- Taber JM, Ellis EM, Reblin M, et al. Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample. PLoS One 2019;14:e0219074.
- Dionne-Odom JN, Ornstein KA, Kent EE. What do family caregivers know about palliative care? Results from a national survey. Palliat Support Care 2019:1-7.
In one study, 60% of adults self-reported as knowledgeable about palliative care have at least one misperception. In another similar study, researchers found that 70% of respondents had never heard of palliative care. Perhaps most concerning, a third study revealed 55% of caregivers have never heard of palliative care.
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