STUDY EXAMINES CAREGIVER AND STAFF PERSPECTIVES ON TRANSITION TO HOSPICE CARE
Innovation in Aging published “‘That Little Bit of Time’”: Transition-to-Hospice Perspectives From Hospice Staff and Bereaved Family.’” The article shares about a research study of hospice staff members and bereaved family care members whose loved ones were served by hospice. The detailed methods and design of the study, along with learnings of the study, are many. The article, available at the link below, gives a full explanation of the study’s details, design, and findings, and caregiver and staff feedback and input.
A key idea of the study focuses on the importance of the initial transition to hospice care. Several findings show up throughout the study. Some of these are: caregiver concerns for greater attention to their emotional needs; smoothing transitions—especially from the hospital—to meet family and patient needs; and, caregivers’ experiences of feeling under-prepared and over-burdened with their duties. The study demonstrates a clear need for hospices to improve hospice admissions and to more fully support patients and families.
The article calls hospice admission the “front door to hospice services,” and says the admission process sets the stage for the overall hospice experience. Yet, the admission process has been understudied. Good transitions into hospice –from both the caregiver and hospice staff perspectives—can set the tone for the overall experience of hospice.
A number of issues are examined. Both caregivers and staff share that patients are often not given good information before their referral and admission into hospice. Hospice staff, then, have to “break difficult news to patients during admission.” Those referred by oncologists seem to have a greater awareness of both their illness and of hospice.
If palliative care has been involved, say staff, transitions are usually easier. Timing of the beginning of hospice is important, and families say they want to feel ready, have needed medical equipment and medication, and feel settled at home before hospice arrives. Timing and readiness, then, are both important. Additionally, patients sometimes experience gaps in pain management through the transition. Both staff and family members, as well as patients, have psychosocial needs that need to be met.
The role, tasks, and burdens of caregivers are often not understood and caregivers and staff both share the outcomes of these burdens. Researchers note the need for better education and support of caregivers. An increase in the involvement of social workers is also tagged as a need. Hospices are called on to better educate caregivers about the role they are taking on, and to attend to full explanation of medication management.
Finally, says the article, “COVID-19 has altered clinical care, challenging providers, bereaved caregivers, and patients as well as resulting in the streamlining of some care practices. Continued research should assess the impacts of the pandemic on care provision as well as the well-being of providers, caregivers, and patients.” (Innovation Aging, 1/18, https://doi.org/10.1093/geroni/igab057)
RESEARCHERS EXPLORE HOW PALLIATIVE CARE CONSULTATIONS CAN FOSTER PATIENT COMPLIANCE
How providers talk with and relate to patients can make a big difference in patient compliance. This is a significant finding of a recent study that explores how professionals encourage client compliance. Using “feeling rules,” suggests the study, corrects “patients’ lay understandings and in doing so facilitate compliance.”
Palliative care professionals name three “feeling rules that validate patients’ emotions and reattribute them to circumstances aligned with professionals’ expert recommendations for care: that patients should fear curative treatment, that patients should hope for pain relief, and that patients and family members should feel guilty for prolonging misery.” The researches of the article, published in Organization Studies, is titled “Feeling rule management and relational authority: Fostering patient compliance in palliative care consultations.” The study concludes that appropriate communication offers providers authority in the professional-patient relationship.
An article from Iowa State University News Service shares more about the study, and about Clayton Thomas, Assistant Professor of Teaching in the Department of Management and Entrepreneurship at ISU. Thomas is one of the two researchers in the study. The other researcher is Mukherjee Shibashis, with Ahmedabad University, Area of Management and Organization, Ahmedabad, India. They explore how palliative care providers fare when they talk with patients and families “about switching from curative treatments to pain management and comfort care.” By validating patients’ hopes and fears, the conversations led to significance compliance as patients became more aware of the costs and possible outcomes of continued treatment.
The article provides examples of how these conversations unfold. Moving patients’ fears — from fear of dying to fear, instead, of possible suffering imposed by prolonged treatment; making decisions about CPR after being made very aware of frequent negative outcomes of CPR; and, complications of intubation when keeping a patient comfortable may mean less suffering — are all examples of how these feeling conversations can help.
When providers listened to patient and family concerns rather than dismissing them, and validate patients’ fears rather than making light of them, patient compliance was found 73% of the time. When these conversations did not happen, compliance was 43% of the time. Thomas says, “These efforts are not aimed at changing the patients’ emotions. They’re aimed at changing their expectations.” (Organization Studies, 2/7, https://doi.org/10.1177/01708406221081625; Iowa State University News Service, 2/14, https://www.news.iastate.edu/news/2022/02/14/palliative-care )
* OIG reports that duplicate payments made for hospice beneficiaries to Medicare nonhospice providers have resulted in $6.6 billion costs from 2010 – 2019. OIG hopes the information will help CMS “further evaluate the need to potentially restructure the hospice payment system to reduce duplicate payments.” The complete report, “Medicare Payments of $6.6 Billion to Nonhospice Providers Over 10 Years for Items and Services Provide to Hospice Beneficiaries Suggest the Need for Increased Oversight,” is available at the second link below. (OIG, 2/14, https://oig.hhs.gov/oas/reports/region9/92003015.asp; OIG, https://oig.hhs.gov/oas/reports/region9/92003015.pdf )
* CMS, in a 2/20 Change Request, number 12619, issued a notice on “Gap Billing Between Hospice Transfers,” saying there is no current mechanism that prevents gap billing. The change calls for “creating system edits to prevent gap billing between hospice transfers.” (CMS, 2/10, https://www.cms.gov/files/document/r11258CP.pdf)
* Hear attorneys Meg Pekarske and Bryan Nowicki, of Husch Blackwell’s Hospice Audit team, delve into “recent developments in hospice audits. A podcast is online, “The OIG’s Impending Review of Nationwide Hospice Eligibility Demands a Robust Response from Hospices. The podcast is online at the first link below. The second link contains other podcasts in the series on the same topic of audits. (Husch Blackwell, 2/16, https://www.huschblackwell.com/newsandinsights/hospice-audit-series-the-oigs-impending-review-of-nationwide-hospice-eligibility-demands-a-robust-response-from-hospices; Husch Blackwell, https://www.huschblackwell.com/thought-leadership#page=1&series=77744)
* The Journal of Pain and Symptom Management (JPSM) includes “Low Hospice Utilization in New York State: Comparisons Using National Data. New York has a “relatively older” population, but continues to have underutilization of hospice. In a mixed-methods study, researchers found a diverse group of factors including a higher socioeconomic status, and more visits to “physicians during the last two years of life.” Researchers also used national data to explore differences between New York and the rest of the US. Combining the factors impacting utilization, and with input from stakeholders, the researchers say, “these findings may help target, and inform initiatives to improve hospice utilization.” (JPSM, 12/21/2021, https://www.jpsmjournal.com/article/S0885-3924(21)00674-6/fulltext)
PALLIATIVE CARE NOTES
* An article on CAPC’s website is titled “Countertransference in Palliative Care Practice: What’s a Clinician to Do?” Palliative care social worker Jill Farabelli explores the complicated emotions that can lead to unconscious responses in patient encounters. The article is online at the link below. (CAPC, 2/9, https://www.capc.org/blog/countertransference-in-palliative-care-practice-whats-a-clinician-to-do/)
* Colorado’s University Anschutz Medical Campus features an interview with Dr. Amos Bailey, the director of the University’s Master of Science in Palliative Care and Interprofessional Palliative Care Certificate Programs. Bailey discusses palliative care, and points out a study where persons who received palliative care for metastatic lung cancer had notably improved quality of life, less depression, and longer lives. Bailey shares about the personal rewards of being a palliative care provider, the Colorado end-of-life options act, the learning he has gotten from his patients, and his work at CU Anschutz. (CU Anschutz, 2/14, https://news.cuanschutz.edu/news-stories/palliative-care-director-its-not-about-death.-its-about-life)
* End of Life University offers “Ask Doctor Death: Tough Questions About Tough Topics with Terri Daniel and Karen Wyatt.” The two physicians share about their work on end-of-life issues, explore the meaning they have found in suffering and grief, and talk about their disagreements with “some contemporary advice given to those who are grieving.” (End of Life University, 2/14, https://eolupodcast.com/2022/02/14/ep-338-ask-doctor-death-tough-questions-about-tough-topics-with-terri-daniel-and-karen-wyatt/)
* AARP offers “Should You Get a POLST?” The article examines the POLST form, explains what it does and how it is used, and says it serves as a gift to show love to those you love. (AARP, 2/11, https://www.aarp.org/caregiving/health/info-2022/what-is-a-polst.html)
* Medscape shares “A Young Doctor Explores Near-Death Experiences.” The article, written by Stephanie Lavaud, examines near-death experiences. The article features an interview with a French physician Francois Lallier, who “conducted a retrospective study on near-death experiences for his general medicine dissertation.” The results of his study lead him to write a book. The article explores Lallier’s interest in near-death experiences, his research, and the response of his colleagues. He shares about the Greyson near-death experience scale, what he learned from interviews, and research on cardiac arrest patients. (Medscape, 1/13,
* Utah’s House Health and Human Services Committee failed to move forward with HB74 which would allow physician assistance in dying. (Salt Lake City Tribune, 2/9, https://www.sltrib.com/news/politics/2022/02/16/democratic-lawmakers-end/)
* New York Times shares an article about two Paris theater productions that portray the realities of physical decline that comes as persons age. The article shares about “A Century—Life and Death of Galia Libertad,” and “A Death in the Family.” The two productions portray the realities of grown old. In the story of Galia Libertad, the play “doesn’t shy away from portraying death, and however hard to look, there may be closure in following down that path.” (New York Times, 2/17, https://www.nytimes.com/2022/02/17/theater/alexander-zeldin-death-in-the-family.html)
* Philadelphia’s 6abc shares “Penn receives historic $125 million grant for tuition-free nurse practitioner program.” The grant comes from alumnus Leonard A. Lauder, son of parents who founded Estee Lauder. With the country’s need for nurses, Lauder says, “‘The program will ensure that more American receive the essential health care services that everyone deserves.” Penn Nursing says it “will select 10 fellows to begin classes this fall.” By 2026, the program will reach its target of 40 fellows each year. (6abc, 2/15, https://6abc.com/tuition-free-nurse-practitioner-program-university-of-pennsylvania-penn-nursing-leonard-a-lauder/11566202/)
* An article in New York Times explores the importance and value of correct causes of death being listed on death certificates. Jane Brody explores the importance of correct death certificates. Dr. James Gill, chief medical examiner for the state of Connecticut, shares how the proximate causes of death are often listed, while the underlying case can be so much more helpful and informative. One example is a 2014 study that found that the true death rate from Alzheimer’s in 2010 “may have been about six times higher than the number of deaths reported” to CDC. This matters, says Gill, because it helps track diseases and execute appropriate action. Geriatrician Emily Carter, says the wrong data can impact life insurance for patients, “estate settlement, genetic risk factors and finding closure.” The article says the wrong cause of death occurs “in 33 to 40 percent of death certificates that are completed at academic institutions….” The mistakes impacts priorities “for medical research and allocating resources.” (New York Times, 2/14, https://www.huschblackwell.com/thought-leadership#page=1&series=77744)
Thanks to Cordt Kasser for contributions.
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.
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