Authors Examine Barriers to and Ideas to Improve Access to Palliative Care
- An article in JCO Oncology Practice is titled, “Is Improving the Penetration Rate of Palliative Care the Right Measure?” The article begins by recognizing that palliative care presence in “oncology care improves outcomes for patients, caregivers, and health systems.” Nevertheless, the sustainability and accessibility of palliative care “is threatened by issues in specialist supply, equity, and care delivery.” The goal of the authors is to examine what optimal “integration and penetration” are, and to explore how to get there!
- The article cites one recent study that shows that the number of cancer patients receiving palliative care has increased. Authors say they are not surprised to see an increase in palliative care. Patients like this care that relieves suffering and distress. Yet, “only 36% of those with very poor prognosis and 18% of those with poor prognosis in 2016 received palliative care services.” Why, then, asks the authors, is there no palliative care for nearly 60% of patients? The answer to that question, they say, is complicated.
- There are about 13,000 active medical oncologists in the U.S., and about 6,000 board-certified palliative care specialists. But about 1.6 million Americans are diagnosed with cancer each year, and about 600,00 die from cancer. Obviously there is an issue of supply and demand. The shortage of professionals to intervene and offer palliative care is clearly a challenge to implementing “effective care.”
- Reimbursement challenges are also limiting access. In fact, “fewer than half of palliative care programs meeting the Joint Commission’s standard of at least one physician, and advanced practice or other registered nurse, a social worker, and a chaplain.” Poor reimbursement seriously limits access to palliative care. The cry for more referrals to palliative care will not, on its own, meet the need or solve the access challenges.
- How then do we move forward “‘with palliative care integration while adhering to the specific components needed to improve patient outcomes?’” To this question the authors have ideas. Oncologists can do better with symptom assessment to understand the stress and needs of each patient. And these interventions must be reimbursed.
- We tend to assume that all patients with advanced cancer are the same, and we have not thoroughly dealt with the reality that every patient is unique. Further, we have yet to understand which patients might benefit most from palliative care. Some patients with less need, or what the authors call “low symptom burden,” may not need palliative care for some time. Those with “high symptom burden” may be the ones to benefit most from early intervention. Considering the limits of available palliative care specialists, the authors say, “diagnosis-based triggers are a poor marker of patient need.”
- The authors called for “attention to innovation, implementation, and equity.” There is no ‘magical thinking to assume that papers alone will enhance penetration, uptake or existing disparities.” (JCO Oncology Practice, 5/1, https://ascopubs.org/doi/10.1200/OP.22.00370)
Lawmakers in New York continue to call on Governor Hochul to sign A0880, a bill that would launch a public awareness campaign in New York State to “promote advance care planning and the use of hospice and palliative care in the state.” In 2018, only 30% of Medicare decedents in New York were enrolled in hospice care when they died. That makes New York the second-lowest hospice enrollment rate of every state except Alaska. Providers of hospice and palliative care have backed the bill. (Spectrum News, 7/15, https://spectrumlocalnews.com/nys/capital-region/ny-state-of-politics/2022/07/15/new-york-lawmakers-call-for-advanced-care-campaign)
Boston’s WBUR shares an essay by Grace Segran, a hospice patient with cancer. Grace shares the poor quality of life she was experiencing before a nurse practitioner visited with her and asked if she would consider entering hospice. Grace agreed. To her surprise, Grace says “That’s how I got my mojo back!” She shares how the hospice supported her daughter in learning how to care for her. She shares that, with hospice care, she began to regain her physical stamina and began to have an appetite again. She started writing and taking small trips again. She still understands, “The window will close at some point, and I will go into decline as the cancer takes over.” But she is grateful for being able, for now, to live with a better quality of life. “Hospice care has given me back my life, for now,” she says. The link below leads to the transcript, the radio presentation, and links to earlier essays Grace has written about her terminal cancer journey. (WBUR, 7/15, https://www.wbur.org/cognoscenti/2022/07/15/hospice-hope-and-end-of-life-grace-segran)
Pennsylvania’s Morning Call’s editor Mike Hirsh wrote an opinion column for the paper. Hirsch is dying with ALS and writes from the family’s cabin in the mountains in New York. Hirsch shares how day and night go for him, the gift of kindnesses by his wife and children and others, and the physical realities he faces. “For decades,” says Hirsh, “I have believed in the philosophy of hospice—to die as natural and dignified a death as possible. I never saw the point of extending life simply because it is medically feasible.” And, he adds, his personal experiences now have confirmed these beliefs. (Morning Call, 7/14, https://www.mcall.com/opinion/mc-opi-als-editor-hospice-end-of-life-20220714-gl6vszozvjdutjzrja4xsqytdi-story.html)
NHPCO and HAN sent a letter to Congress, along with a number of other organizations, asking Congress to protect “access to high-quality hospice care for Medicare beneficiaries by calling on the Centers for Medicare and Medicaid Services (CMS) to make changes to the proposed payment rate increase for Fiscal Year 2023 (FY23). Gas prices, labor shortages, wages, and COVID costs have all made the provision of care more costly. The first link below is to the press release by NHPCO and HAN, and the second link is to the letter sent by the groups. (NHPCO, 7/12, https://www.nhpco.org/nhpco-and-han-urge-congress-to-protect-access-to-high-quality-hospice-care/; https://www.hospiceactionnetwork.org/fy23-hospice-rate-increase/)
PALLIATIVE CARE NOTES
Physician Samuel Mathis shares that the value of palliative care is strengthened when integrative therapies are included. These therapies include, exercise, healthy eating, aromatherapy music therapy, acupuncture and supplements. He gives a short explanation and benefit of each of these. (The Daily News, Galveston Texas, 7/6, https://www.galvnews.com/health/free/article_38ebc1f0-efbb-5099-bd08-2ce1ee234db0.html)
Physician Christian Sinclair, writing in Pallimed, calls for celebration because the December 2021 fellowship match shows that palliative medicine “is the fifth largest medical subspeciality!” Palliative medicine falls behind only the subspecialties of cardiology, pulmonary and critical care, hematology and oncology, and gastroenterology. Sinclair calls for the palliative care community to do a better job of telling its story very well. And, since this is the season for fellowship applications, “get the word out to pre-med student, med students and residents of all primary specialties to put” hospice and palliative medicine on their “shortlist.” (Pallimed, July, https://www.pallimed.org/2022/07/celebrating-hospice-and-palliative.html
“Joint Commission issues new safety guidance for palliative care” appears in Becker’s Hospital Review. Often these patients who need palliative care come to emergency rooms where their needs may not be best met. The Commission notes that palliative care is beneficial for seriously ill patients. The Commission “offers recommended actions for hospital to address the needs of seriously ill patients, including examining trends in emergency department usage and hospital admissions to determine if palliative care would be more beneficial; collaborating with local healthcare organizations that offer palliative care; and supporting efforts with emergency departments to incorporate palliative care principles into their practice.” The first link below goes to the article in Becker’s Hospital Review. The second link is to The Joint Commission’s “Quick Safety Issue 66.” (Becker’s Hospital Review, 7/13, https://www.beckershospitalreview.com/patient-safety-outcomes/joint-commission-issues-new-safety-guidance-for-palliative-care.html; The Joint Commission, 7/12, https://www.jointcommission.org/resources/news-and-multimedia/newsletters/newsletters/quick-safety/quick-safety-issue-66#.YtC2KezMJiK)
An opinion column in Cleveland.com shares about the palliative care at home program offered by Western Reserve Hospice. The service, offered by a “Western Reserve Navigator” received a 100% feedback. from patients and families served in 2021, saying they would likely recommend the service to others. The article shares more about the details of the program, which offers care from a team of “social workers, advanced practice nurses, a volunteer coordinator and trained volunteers.” There is no charge for services of the social worker or volunteers. Nursing and medical care are billed through patients’ insurance. (Cleveland.com, 6/17, https://www.cleveland.com/opinion/2022/07/palliative-care-at-home-can-improve-quality-of-life-joan-hanson.html; https://www.cleveland.com/opinion/2022/07/palliative-care-at-home-can-improve-quality-of-life-joan-hanson.html)
The California Department of Public Health has released “California End of Life Option Act 2021 Data Report. The report, available online at the link below, says that 767 persons made the two verbal requests, at least 15 days apart as required, for life-ending medications. Prescriptions were prescribed by 277 physicians to 772 individuals for aid-in-dying drugs. Of these, 448 were reported to have died by ingesting the medications. This number of persons equals 14.8 persons for every 10,000 deaths. The online report offers extended details and data. (California Department of Public Health, July 022, https://www.cdph.ca.gov/Programs/CHSI/CDPH%20Document%20Library/CDPH_End_of_Life%20_Option_Act_Report_2021_FINAL.pdf)
An article in Stat News shares frustrations of consumers and healthcare professionals on the use of “failure to thrive” as a diagnosis. Within the article, commenters call the practice ageist, “a placeholder,” or the diagnosis for when healthcare providers don’t know what is happening with a patient. Seth Fischer, who saw the words on his father’s death certificate, says this cause of death made his father sound like his death had been his own fault—“As if old age were a test his father had failed.” Several physicians have lobbied for the term to be scrapped. Geriatrician Catherine Sarkisian says physicians should just tell the truth. “‘If someone is not eating enough, say they’re not eating enough! If they can’t take a shower anymore by themselves, say they can’t take a shower anymore by themselves!’” The article offers a thorough exploration of this topic, examines issues it creates, notes the need for more gerontologists, and discusses both the implicit and explicit ageism. (Stat Health, 7/12, https://www.statnews.com/2022/07/12/adult-failure-to-thrive-label-medicine/)
PBS’s Brief but Spectacular features Alua Arthur, a death doula and founder of Going With Grace. She shares about her work and about the things people have to take care of as they near death. She shares about physical and emotional needs and the importance of the brief time left for them. (PBS Brief but Spectacular, 7/14, https://www.pbs.org/newshour/show/a-brief-but-spectacular-take-on-living-like-were-dying)
GRIEF AND ADVANCE CARE PLANNING NOTE
Autumn is a tech startup that “has developed a dying care digital market to attach bereaved households with companies” that might support them. StategyR, a market analysis agency, estimates that “‘dying care companies’ can be a $147.8 billion trade by 2026.” The first link below shares about the launch, and the second link leads to Autumn’s home page. (Technical Caps, 7/13, https://technicalcaps.com/tech-startup-autumn-launches-loss-of-life-care-digital-market/; Autumn, https://www.autumn.co/)
Michael Pollan’s is the author of the bestselling 2018 book, “How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence.” He also is co-founder of UC Berkeley’s Center for the Science of Psychedelics, which launched in 2020. Now, he has worked with Netflix to create a docuseries called “How to Change Your Mind.” The four-part series started on 7/12. In an article in Time magazine, Pollan shares extensively about his experiences with, and research of, psychedelics. He stresses his belief that the use of psychedelics should include the guidance of a trained guide; and he decries the ways that capitalism is “doing its thing with psychedelics.” The article shares more about the use of psychedelics in other times and other places. There is also a trailer of the new Netflix docuseries. (Time, 7/12, https://www.yahoo.com/now/end-life-preparedness-actions-speak-130000915.html; https://time.com/6196310/michael-pollan-interview-how-to-change-your-mind/)
Thanks to Jeannette Koijane for contributions.
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Hospice Analytics is the national sponsor of Hospice News Network for 2022. Hospice Analytics is an information-sharing research organization whose mission is to improve hospice utilization and access to quality end-of- life care. For additional information, please call Dr. Cordt Kassner, CEO, at 719-209-1237 or see www.HospiceAnalytics.com.