Teaching Rationally Sensitive Care Includes End-of-Life Care
- Learning about death is “an expected part of medical school training,” but students may not be “learning as much about dying.” Given the significant disparities in how patients experience illness, “how can we ensure that the care we provide does not also lead to difference in how our patients die? How should our medical school curriculum prepare us to provide our patients with equitable and culturally humble care not only during the prime of their lives, but also during their final days?”
- These are central questions examined in “A ‘Good Death’ for All: the need to Teach Racially Sensitive End-of-Life Care,” an article in the Journal of General Internal Medicine. The article is written by two students at Harvard Medical School, along with Harvard’s Dean for Student and Multicultural Affairs. We already know there are existing racial variations in terms of how end of life is faced. Hispanic patients are less likely to engage in advance planning. “Black, Native American, and Asian patients are less likely to die in hospice facilities.”
- Just as the HIV epidemic changed medical training in the past, the authors hope that the lessons of the pandemic “will similarly change the way we approach death and dying, especially for our most vulnerable patients.” There is end-of-life training at Harvard Medical School, says the article, but the medical training does “not include a required palliative care clerkship.” Third year medical students report that they “rarely or never” have cared for “dying patients in their core clerkships, and, if they did, teams did not formally debrief or reflect on these experiences.” And, “these data are representative of national inadequacy of end-of-life training during medical school.”
- Some medical schools, including Harvard School of Medicine, are finding ways to go beyond what is required, in order to “prepare their students for culturally humble end-of-life conversations.” Some medical schools already have “a geriatric and/or palliative care clerkship or home visit component to emphasize the importance of and varying approaches to end-of-life care.” Still others have offered courses that include interviews with bereaved family members. “They also educate medical students about the value of racially and culturally concordant care informed by community outreach. . .” “Academic medical centers that train medical students must prioritize cultural humility and diversity on care teams,” says the article.
- The authors call for more robust training that acknowledges “racial difference in care preferences as well as pre-existing inequities.” They also call for more work in measuring quality “not based on equality, with all patients receiving the same care, but equity, in which we listen to patients’ preferences and provide them care which meets their specific needs and respects their values.” (Journal of General Internal Medicine, July 2022, online 6/16, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9202963/)
Does Hospice Need to be Reformed?
- An article in Managed Healthcare Executive explores various factors in hospice, including where the care is offered, how it is reimbursed, and how to address quality concerns. The article, “Reforming Hospice,” explores various aspects of hospice.
- “Some experts want to see more funding for hospice in the home,” begins the article. “Others say the advantages of hospice in a hospital or nursing home have been underrated.” Many patients want to be at home. Alexis Drutchas, MD, a palliative care physician at Massachusetts General Hospital in Boston, says that many patients cannot be home because there is not enough family support, or enough financial viability to hire extra caregivers. And families are spread out much more than in the past. This is hard for families, says Drutchas, but “it’s not their fault that they can’t bring their mom home.” Can a way be found to have some of that funding enable families bring loved ones home? Drutchas says, “It is heartbreaking…to see patients—with their families in agreement—who want to die at home but don’t for a number of reasons.”
- The article notes that hospice has a good reputation. In fact, a 2017 study by Kaiser Family Foundation survey showed that 70% of Americans know at least a little about hospice. And, of those, 85% of those feel positive about hospice, and 47% feel very positive.
- Ben Marcantoinio, COO for NHPCO, says that what is needed is a redefined hospice benefit. Care needs to be “‘delivered in a way that meets the needs of those who experience serious illness and end of life today.’” Desire is expressed that Medicare’s requirement for a six month or less diagnosis can evolve. The article reports that “an estimated $80,000 a year per person” is spent “for medical care in the last year of life.”
- MedPAC reported, in their 2022 Report to the Congress, that 47% of hospice patients received care at “a nursing home, assisted living facility, hospital, or hospice facility.” And the cost of care increased between 2010 and 2020 by 5.7% each year, moving from 12.9 billion dollars to 22.4 billion dollars. The article explores numerous other details about payment for hospice. For-profit hospices work in order to please shareholders, Drutchas says, and they “think about picking and choosing the patients with fewer physical needs” so that they can keep more of the reimbursement. Marcantonio says he understands this concern, but also says that “for-profit and quality are reenforcing, not mutually exclusive.” Without quality in care, for-profit providers would not be successful.
- Next, The article explains the components and payment system for hospice care. Then, the article explores the advantages of the hospital as a place of care delivery, and explains how the payment system is different from that of hospice. For some families, death in a facility –hospital or inpatient hospice—“may be the better choice for families.” An inpatient facility may be the best choice for patients who have “severe symptoms and need [a] great deal of care.” The portrayal of hospital patients hooked up to machinery and dying under bad conditions, says the article, is not right. It can be peaceful, and patients and families can spend quality time together. This holds great value as time draws short.
- Patients who wish to die at home should be able to do so, the article reiterates. But many cannot afford the extra support services. Leaders who are quoted in the article wish that Medicare would “increase financial support for families.” The Department of Veteran Affairs, as well as some states’ Medicaid programs, will pay for family caregiving, the this is called a “good example.” (Managed Healthcare Executive, 7/20, https://www.managedhealthcareexecutive.com/view/reforming-hospice)
Pyschedelics Can Provide Psycho-Spiritual Growth
- Lou Lukas teaches palliative medicine at the University of Nebraska Medical School. Her clinic is one of a number of places that is using psychedelics with people nearing life’s end. Wisconsin Public Radio recently interviewed Lukas. The radio interview and the transcript titled “Dying without fear: How psychedelics can ease the anxiety of terminal illness,” are both online at the link below.
- Lukas’s clinic is using a trial of psilocybin with pancreatic cancer patients. Most of these patients receive their diagnosis late in the progression of the disease, and have only a couple of months to live. When Lukas meets a new patient, she says, she knows that they have been told they have a terminal illness and that they are terrified. They start to “shut down,” she says, and “become depressed and anxious.” Healthcare providers begin to order treatments, even if these treatment result in spending a lot of time in treatment, and less time with family.
- “Lukas believes psychedelics have the potential to transform life after a terminal diagnosis by easing the grip of fear.” She has seen the results of psylocibin therapy and says, “It’s phenomenal.” Profound experiences are reported by 60 to 80% of the patients who have this therapy, and their experiences “dramatically change their life and their perception of illness, which is remarkable because nothing else works like this.”
- The patients who choose to enter the study, receive “eight hours of preparatory counseling, a day-long dosing session, and then several sessions of integration afterwards.” Lukas reports that patients are often amazed by the experience at the end of the dosing session. People share that they feel loved. Lukas shares other examples of patient’s feedback. “We need more physicians,” says Lukas, “who feel called to edge-walking – one foot in the medical world and one foot in the psycho-spiritual world.” (Wisconsin Public Radio, 7/16, https://www.wpr.org/dying-without-fear-how-psychedelics-can-ease-anxiety-terminal-illness)
Husch Blackwell’s “Hospice Insights” podcasts offers “Quality Data Reporting Determinations Raise New and Recurring Issues.” Attorneys Meg Pekarske and Jacob Harris talk about hospices that received notices from Medicare Administrative Contractors that their payments will be reduced by 2% because they did not meet the quality data reporting requirements. They explore the issues for hospices, and “how to pursue an appeal of the 2% payment reduction.” The podcast is online at the link below. (Husch Blackwell, 7/20, https://www.huschblackwell.com/newsandinsights/hospice-audit-series-its-that-time-of-year-again-quality-data-reporting-determinations-raise-new-and-recurring-issues)
A Sacramento-area home health and hospice owner was sentenced to 18 months in prison for paying and receiving healthcare kickbacks. A number of persons who accepted the kickbacks plead guilty and are awaiting sentencing. (Shore News Network, 7/21, https://www.shorenewsnetwork.com/2022/07/21/sacramento-area-home-health-care-and-hospice-agencies-owner-sentenced-to-18-months-in-prison-for-conspiring-to-defraud-medicare/)
Physician Simran Malhotra is a palliative care and hospice physician. Malhotra is interviewed by MSN, and reflects on “What Most People Say Before They Die.” She explores common regrets that people express, lessons the living can learn from the dying, emotions people experience before they die, and words people say before death. Malhotra says she asks her patients two questions when she begins her work with them. “What brings you joy?” “What is most important to you?” Though she hears all kinds of stories, Malhotra says that regrets at the end of life “center around self-love and interpersonal connection.” (MSN, 7/7, https://www.msn.com/en-us/health/wellness/what-most-people-say-before-they-die-according-to-top-hospice-doctor-simran-malhotra-exclusive/ar-AAZkFRk?li=BborjTa)
Caregivers of patients with multiple myeloma (MM) “experience substantial psychological distress across the disease continuum, particularly anxiety.” An article in Blood Advances reports on a study of caregivers that found rates of “anxiety, depression and post-traumatic stress disorder (PTSD) symptoms” were high among these caregivers. Of the caregivers who were studied, 44.1% suffered clinical symptoms of anxiety; 15.8% were depressed; and 24.4% had symptoms of PTSD. While caregivers knew the patient’s diagnosis, and the oncologist had told the patient that the illness has no cure, “a significant portion of caregivers believe that the patient’s MM is curable.” (Blood Advances, 7/18, https://www.healio.com/news/hematology-oncology/20220718/anxiety-distress-common-among-caregivers-of-patients-with-multiple-myeloma)
Senators Cory Booker (D-NJ) AND Rand Paul (R-KY) have introduced legislation that would clarify “that the Right to Try Act should allow terminally ill patients to have access to Schedule I drugs for which a Phase 1 clinical trial has been completed.” Earl Blumenauer (D-OR) and Nancy Mace (R-SC) will introduce the legislation in the House. “Recent studies suggest that MDMA and psilocybin could represent an enormous advancement in mental health and psychopharmacology,” Booker says. Paul says, “As a physician, I know how important Right to Try is for patients facing a life-threatening condition.” Booker and Paul want the government to back off and allow more access to these medications. (Cory Bookers Senate page, 7/20, https://www.booker.senate.gov/news/press/booker-paul-introduce-bipartisan-legislation-to-amend-the-right-to-try-act-to-assist-terminally-ill-patients#:~:text=WASHINGTON%2C%20D.C.%20%E2%80%93%20Today%2C%20U.S.,clinical%20trial%20has%20been%20completed.)
GRIEF AND ADVANCE CARE PLANNING NOTES
“What Comes After Death?” appears in Medpage Today, and focuses on how to talk to children after death. In a clinical setting, says author Rebecca Morse, PhD, MA, several steps can help guide the conversation. “Be honest about what you don’t know first-hand.? Ask what children believe, and “help them process their emotions around it.” “Help the child learn to label their emotions.” It is challenging to talk with children about death, Morse confesses, and a child’s grief may manifest in many ways. (MepPage Today, 7/13, https://www.medpagetoday.com/opinion/second-opinions/99700?xid=nl_secondopinion_2022-07-17&eun=g963454d0r)
JCO Oncology Practice has an article on the importance of “Serious Illness Conversations in Outpatient Oncology” The article reports on an initiative at Dartmouth Cancer Center focused on increasing both the “occurrence and documentation” of these conversation. A team of clinicians, researchers and others worked together to increase these “Serious Illness Conversations (SIC) from a baseline of, at or near, zero to 25% eligible patients. . .” Too often, says an article in Medical and Life Sciences News that covers the study, these conversations often happen later than they should, or not at all. SIC include “two equally important parts.” These parts are “clinicians sharing information on prognosis and treatment options, and patients and their families sharing their values and preferences.” With the efforts of the team, the number of patients engaging in SIC, over 18 months, grew from near zero to 70%. The patients studied were diagnosed with head and neck cancer and sarcoma. The SIC were interdisciplinary. The work, researchers declare, was successful. It did require “resource investment (training and time) to embed into team workflows.” Now the work will focus on “scaling the approach across multiple clinics, the patient experience, and outcomes of care associated with oncology clinician-led SIC.” The first link below is to the JCO article, and the second is to the Medical and Life Sciences News article. (JCO Oncology Practice, 7/20, https://ascopubs.org/doi/10.1200/OP.22.00086; Medical and Life Sciences, 7/20,https://www.news-medical.net/news/20220720/New-evidence-based-training-program-to-improve-serious-illness-conversations-for-cancer-patients.aspx)
An article in Psychology Today offers “7 Things Everyone Should Know About Caregiving.” The article explores the process and stresses of caregiving, and offers tips to caregivers. Seven key areas that are each briefly discussed are: Expect a million little losses. Don’t compare caregiver experiences, as none are the same. “Caregiving is expensive.” Caregiving is emotional labor. Advocacy is critical. Language is important. Having secrets as a caregiver are not unusual. (Psychology Today, 7/18, https://www.psychologytoday.com/us/blog/widows-guide-healing/202207/7-things-everyone-should-know-about-caregiving)
Thanks to Cordt Kassner 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.