By Liz Seegert
The COVID-19 pandemic has helped sharpened the focus on palliative and end-of-life care. However, it is critical not to confuse or conflate these two concepts. End of life, or hospice care, is for people for whom a cure is no longer possible. They must meet certain guidelines to qualify for Medicare-reimbursed services.
Palliative care, on the other hand, can be provided either in conjunction with hospice services or with curative care. Palliative care uses an interdisciplinary, holistic, team-based approach whose members work with a patient’s other health providers to address physical, emotional, social and spiritual issues people may face during their illness. The patient can still receive treatment for their condition and keep their doctors while receiving palliative care.
The Center to Advance Palliative Care estimates:
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More than 90 million Americans are living with serious illness, and this number is expected to more than double over the next 25 years with the aging of the baby boomers.
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Some six million people in the United States could benefit from palliative care.
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More than two-thirds (68%) of Medicare costs are related to people with four or more chronic conditions — the typical palliative care patient.
Palliative care focuses on relieving symptoms and stress of a serious illness such as cancer, congestive heart failure, Parkinson’s disease or HIV/AIDS. This type of care may include helping the person manage:
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Pain
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Depression
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Shortness of breath
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Fatigue
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Constipation
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Nausea
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Loss of appetite
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Difficulty sleeping
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Anxiety
“Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness,” according to the CAPC.
The team takes a patient and family-centered approach to helping a person better understand their disease, clarify their goals and options, understand and support their ability to cope with their illness, helps with making medical decisions and provides an extra layer of comfort for the person and their family, with the overall goal of improving the person’s quality of life.
Palliative care is offered in a variety of settings, including the hospital, outpatient clinic and at home. Yet, only one in 10 people needing palliative care worldwide receive it, reported the World Health Organization. In the U.S., access to palliative care continues to fluctuate, often depending on geography and hospital size. According to a recent CAPC report:
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72% of U.S. hospitals with 50 or more beds have a palliative care team, up from 67% in 2015, 53% in 2008 and 7% in 2001. These hospitals currently serve 87% of all hospitalized patients in the U.S.
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94% of hospitals with 300 or more beds have palliative care teams.
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Less than one-third of hospitals in Arkansas, Mississippi and Alabama reported a palliative care team.
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Palliative care in rural areas is scarce. Only 17% of rural hospitals with 50 or more beds report palliative care programs.
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Every hospital in New Hampshire and Vermont has palliative care programs, as do 89% in Rhode Island and 88% in Massachusetts.
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Montana, Nevada and Utah also report high numbers of palliative care teams.
According to the National Academy for State Health Policy, palliative care:
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Lowers service utilization and more cost savings during the last three months of life.
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Reduces Intensive Care Unit admissions by 37%.
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Reduces hospital costs of care.
Palliative care has been an underutilized approach for years. However, in light of the tremendous toll from the pandemic, many advocates are calling for increased funding for these services, including both patient and professional education. A palliative care strategy can help reduce health care costs, particularly among those with long-COVID, by transitioning them to community settings. It can also relieve suffering and help patients and their families cope with the physical and emotional fallout from COVID, as well as many other devastating diseases.
Story ideas
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If your local hospital lacks a palliative care team, find out why and explore the benefits vs. costs of this service.
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As states weigh in how to maintain and provide services in the face of lower revenue and increased demand due to COVID-19, palliative care may become an increasingly valuable resource. How is your state addressing options such as expanding scope of practice for nurse practitioners and physician assistants, budgeting for more community based palliative programs, etc.?
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Long-COVID patients may need support for years to come. Is your health system or hospital’s palliative care unit prepared? Are local home care agencies staffed and prepared to address this need?
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The care team provides extensive support to family members of those receiving palliative care. What difference has it made (or did it make) in helping them cope with a loved one’s serious or terminal illness?
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What provisions for supportive care are in place in your state for residents in rural or underserved/under-resourced communities?
Experts to call
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Diane E. Meier, M.D., F.A.C.P., F.A.A.H.P.M., founder, director emerita and strategic medical advisor for the Center to Advance Palliative Care. Contact: Melissa Baron, Melissa.baron@mssm.edu
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VJ Periakoyal, M.D., professor of medicine and founding director of the Stanford Palliative Care Education & Training Program. periyakoil@stanford.edu
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Jon Broyles, chief executive officer for the Coalition to Transform Advanced Care (C-TAC). Contact: Andrew Lozano at alozano@thectac.org
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Jean Kutner, M.D., professor of medicine at the University of Colorado School of Medicine and member of the executive committee at the CU Anschutz Multidisciplinary Center on Aging. Contact: Jodi Waterhouse, Jodi.waterhouse@cuanschutz.edu
Resources
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Palliative care vs. hospice is a handy one-pager from the National Hospice and Palliative Care Organization highlighting some of the differences in care. (Downloadable pdf)
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2019 state by state report card is a report on access to palliative care from the Center to Advance Palliative Care.
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2020 Palliative Care Needs Survey Report is from the National Hospice and Palliative Care Organization (2018 data).
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The Conversation project, is a project started by journalist Ellen Goodman and now a public initiative from the Institute for Healthcare Improvement to begin and continue discussions about what matters when it comes to serious illness and end-of-life care.
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Palliative Care Law & Policy GPS is a Yale University initiative that tracks legislation on palliative care and improvements in the care of people with serious illness across the 50 states, the U.S. territories, the Indian Health Service and the Veterans Administration.
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Coalition to transform advanced care (C-TAC) is a nonprofit focused on underserved and under-resourced people impacted by serious illness.
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Pediatric Palliative Care Programs in US Hospitals is a resource from the American Academy of Pediatrics.
