"CE Corner" is a continuing education article offered by the APA Office of CE in Psychology.
To earn CE credit, after you read this article, purchase the online exam at www.apa.org/ed/ce/resources/ce-corner.aspx.
Upon successful completion of the test — a score of 75 percent or higher — you can immediately print your CE certificate.
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CE credits: 1
Learning objectives: After reading this article, CE candidates will be able to:
- Define palliative care and how it is different from hospice care.
- Discuss the benefits of palliative care.
- Describe areas where psychologists can become more involved in end-of-life care.
Several times a year, “CE Corner” presents a hypothetical ethical situation and asks ethics experts to offer insights on how to address it. Here is this month’s vignette:
The patient was nearing the end of his life. A former combat veteran, he was receiving inpatient hospice care at a Department of Veterans Affairs (VA) hospital. He was agitated and distressed, startling often and calling out while he slept. Then a psychologist came to evaluate him.
"The patient had never been formally diagnosed with post-traumatic stress disorder, but the psychologist realized that he was showing subclinical PTSD symptoms that were exacerbated by the hospital environment," recalls Heather Smith, PhD, lead psychologist at the Milwaukee VA Medical Center. Nurses were waking him up to give him medications or take his vital signs, and inadvertently triggering his anxiety.
That experience, well over a decade ago, led VA psychologists to create a protocol to help health-care providers avoid actions that might aggravate trauma-related symptoms when caring for someone at the end of life. "Those precautions really make a difference in someone's comfort and quality of life," Smith says.
The case is just one example of the ways psychologists can improve care for people in the final days, weeks or months of their lives. Yet while the field of palliative care is growing rapidly, the health-care teams that provide such care outside the VA don't often include psychologists.
That discrepancy was noted in the updated APA Resolution on Palliative Care and End-of-Life Issues, which APA's Council of Representatives adopted in August. The resolution calls for APA to actively promote and support psychology's involvement in palliative care and end-of-life issues.
"There are a handful of us psychologists out here doing this work. But as a field, we're not stepping up," says Maureen E. Lyon, PhD, a clinical health psychologist at Children's National Medical Center and the George Washington University School of Medicine and Health Sciences who studies advance care planning and complex chronic conditions.
Yet psychologists are well positioned to assist patients at the end of their lives and to support family members and the physicians who provide care. "With our training in research and clinical practice and our grounding in ethics, we can help make sure the care people want at the end of their life is the care they receive," Lyon says.
A holistic approach
When people think about end-of-life care, they often think of hospice. In fact, a minority of people receive hospice care in their final days. Hospice is defined by its Medicare benefit and is available to those who are given a prognosis of six months or less to live and who have elected not to pursue certain types of curative treatment.
In contrast, patients can receive palliative care services for a much longer period, from the time they are diagnosed with a serious or life-limiting illness. While palliative care medicine also emphasizes symptom management and the patient's comfort, it is sometimes delivered in concert with curative treatments, such as chemotherapy.
Palliative care is particularly relevant in today's health-care landscape, in which technological advances and new treatments are helping people live longer with serious illness, says Brian Carpenter, PhD, a professor of psychology at Washington University in St. Louis who studies the clinical psychology of aging.
But longer doesn't necessarily equal better, he adds. Palliative medicine emphasizes quality of life and takes a holistic view of dying. "Dying is not just a medical event. It's also a psychological and social experience," Carpenter says. "Palliative care addresses the medical, psychological, social and spiritual needs of a person with serious illness and their care partners."
Palliative care gained its footing in cancer centers, where physicians realized the need for specialists who could help manage the symptoms and side effects of the disease and its treatment. Now, palliative care is spreading to patients facing other serious illnesses, such as respiratory or neurologic diseases.
In a 2015 review, Amy S. Kelley, MD, and R. Sean Morrison, MD, of Mount Sinai Health System in New York City, reported that palliative care programs in the United States grew more than 150 percent over the previous decade, particularly in large hospitals (New England Journal of Medicine, Vol. 373, No. 8, 2015).
And patients are benefiting from those programs. In their review, Kelley and Morrison also reported that palliative care interventions have been shown to improve patients' symptoms and their reliance on health-care services, enhance quality of life for patients and increase satisfaction for their families. Those benefits were realized in a variety of patient populations, including those with cancer, neurologic disease, lung disease and older adults with multiple coexisting conditions.
"There's good evidence that palliative care does improve quality of care, quality of life and quality of the dying experience," Carpenter says. More surprisingly, it also saves money. "Palliative care tends to direct people away from more aggressive, expensive treatments that may have relatively small gains to offer in terms of quality of life," he explains.
In an earlier study, Morrison and his colleagues examined data from patients enrolled in Medicaid at four New York hospitals from 2004 to 2007. Compared with patients receiving care as usual, those who received palliative care had hospital costs averaging $6,900 less per admission. Patients who received palliative care also spent less time in intensive care and were less likely to die in the intensive care unit—outcomes that most patients and their families say they prefer (Health Affairs, Vol. 30, No. 3, 2011).
Those who work in the palliative care field say that many more people could benefit from it. "The field of palliative medicine has grown exponentially, but in some ways, it is still in its toddlerhood," Smith says.
A 2016 study of U.S. hospitals by Tamara Dumanovsky, PhD, at the Icahn School of Medicine at Mount Sinai, and colleagues found that 67 percent of hospitals with more than 50 beds, and 90 percent of those with at least 300 beds, have palliative care programs. But access to those programs is patchy. While 88 percent of New England hospitals offer palliative care, fewer than half of hospitals in Southern states do (Journal of Palliative Medicine, Vol. 19, No. 1, 2016).
Geography isn't the only barrier to end-of-life care, as Kimberly S. Johnson, MD, at Duke University described in a 2013 review. Johnson reported that among Medicare beneficiaries, white Americans are significantly more likely than those of other racial and ethnic groups to use hospice services.
Johnson also found differences in the types and quality of care people from different racial groups receive. Compared with white Americans, black and Hispanic Americans are more likely to be hospitalized and receive aggressive medical treatments in their last six months of life, and are more likely to die in the hospital. In a survey of bereaved family members, black Americans were less satisfied than white Americans with the end-of-life care that their loved ones received (Journal of Palliative Medicine, Vol. 16, No. 11, 2013).
Disparities in end-of-life care can often be attributed to access and education. "As with most health-care resources, people from rural areas, those with low socioeconomic backgrounds, and those with less education or lower health literacy are also less likely to get palliative and end-of-life care," Carpenter says.
In some cases, cultural differences may also be driving the disparities in who receives end-of-life care. "There are some important cultural differences about how patients think about the end of life, how they share information about terminal illnesses and their comfort in talking about it," Carpenter says.
End-of-life care can be a touchy subject, and one that's often misunderstood. "In the U.S., people can talk so much more easily about sex than death. There's a need for palliative care literacy," says Rebecca S. Allen, PhD, a clinical geropsychologist at the University of Alabama who studies psychological interventions for people with chronic and terminal illnesses.
"We need to help people in the community understand why it's important to consider your values and how you want to live your final days. Planning for the end does not mean you're ‘fixin' to die,' as they say in Appalachia, where I'm from," Allen adds. "Everyone has end-of-life preferences, but most people never have a conversation about them."
VA leads the way
Psychologists are well trained not only in helping people make decisions about their care, but also in helping them manage the complex emotions that can occur at the end of life. Yet psychologists are not often involved in the process. For example, although Medicare covers the cost of advance care planning for patients who wish to create an advance directive stating how they would like medical decisions to be made for them if they become unable to do so themselves, that benefit only reimburses physicians and nurse practitioners for advance care planning. Similarly, hospice teams traditionally include physicians, nurses and social workers. And while psychologists are involved with some hospital palliative care teams, their presence is less common than one might expect.
The notable exception is in the Department of Veterans Affairs. "The Veterans Affairs system has embraced psychology, and psychologists in that system are almost always a member of the interprofessional care teams," Allen says. That commitment dates back at least two decades, Smith says. "The VA recognized that palliative care is also about psychosocial care and spiritual care, and that's where psychologists really come into play."
About 15 years ago, she says, the VA created an Interprofessional Palliative Care Fellowship Program that provides advanced training in hospice and palliative care to people from a variety of professions, including a psychology postdoctoral fellowship with a focus in palliative care. The VA's team-based approach integrates all aspects of a patient's care in ways not typical in other settings, Smith says. Psychologists are accustomed to helping people manage anxiety, for instance. But VA psychologists often "take that show on the road," she says—guiding patients in relaxation techniques while they're sitting in the radiation suite or receiving injections. "To work in these interdisciplinary teams, you have to be flexible in your approach and comfortable delivering psychological services in nontraditional settings, often in front of other health-care providers," she says.
That approach could easily be applied to end-of-life care in civilian hospitals, medical centers and care facilities such as nursing homes. In fact, psychologists are much more integrated into palliative care in hospitals in Japan and some European countries, Carpenter says.
Most psychologists working in end-of-life care agree that systemic factors have prevented members of their field from being more involved in end-of-life care. Palliative care services in the United States are typically written into the structure of the hospital, rather than billed through a pay-for-service model. That system favors social workers, who have been embedded in the hospital setting longer than psychologists have. "Our health-care system is continuing to shift toward an interdisciplinary model, but it's a culture shift—and we're not there yet," Smith says.
Opportunities exist for psychologists to become more involved at various points along the end-of-life spectrum. They can encourage healthy clients to consider their own wishes for end-of-life care and create advance directives. They can help people accept and cope with serious medical diagnoses, and support them as they reach their final days. And they can provide psychological support to bereaved family members after a loved one has died.
Ideally, those psychologists would have specific training in end-of-life care, Allen says. As yet, there's no specialty board for palliative care, she adds, but those with training in health psychology or geropsychology are well suited to helping patients in their final months or days. "It would be lovely to have more training programs in palliative care, but there are a variety of paths to this destination," she says. "We need more boots on the ground."
A variety of psychotherapeutic models bring comfort to people facing the end of their lives, Allen says. Meaning-centered therapy, for example, was designed to benefit patients with cancer by enhancing meaning, spiritual well-being and quality of life. The Legacy Project Intervention, which Allen developed, guides terminally ill patients and their families as they create family scrapbooks, cookbooks, audiotaped stories or other keepsakes. Such projects can decrease caregiver stress and improve family communication (Journal of Pain and Symptom Management, Vol. 48, No. 4, 2014).
"There are a number of models, but they all involve letting the people who are dying tell their stories and share their wisdom, and involve others around them in that process," Allen says. "These psychological models can help facilitate family reconciliation, forgiveness and healing in the final years or months of life."
Even in families that do not have rifts to heal, psychologists can help improve communication, says Lyon. She became interested in palliative care several decades ago, while providing psychological services for HIV-positive adolescents. Surveying her patients, she found that the ill teens often wanted to be more involved in making decisions about their end-of-life care. In several cases, she worked with dying youth who wanted to stop aggressive treatment but hadn't been able to tell their parents for fear of upsetting or disappointing them. Psychologists can help to facilitate those types of difficult but critical conversations, she says.
Psychologists working in palliative care can also help physicians and health-care providers better communicate with their patients, Carpenter says. "We can help other providers understand what the experience is like for patients, and the psychological needs they have at the end of their lives," he says.
And that role is often much less sad than people think, he adds. "It's a gift to help an individual or their family members at one of life's most poignant moments," Carpenter says. "To help people through that moment is very fulfilling."
● Next month, "CE Corner" will cover the psychologist's role in assisted dying.
Health Affairs: Advanced Illness & End-of-Life Care
Weil, A.R. (Ed.) 2017
Palliative Care for the Seriously Ill
Kelley, A.S., & Morrison, R.S.
New England Journal of Medicine, 2015
Opportunities for Psychologists in Palliative Care: Working With Patients and Families Across the Disease Continuum
Kasl-Godley, J.E., King, D.A., & Quill, T.E.
American Psychologist, 2014
Meaning-Centered Psychotherapy: A Form of Psychotherapy for Patients With Cancer
Montross Thomas, L.P., Meier, E.A., & Irwin, S.A.
Current Psychiatry Reports, 2014
Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life
Institute of Medicine, 2014
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