PAPER EXAMINES CHALLENGES HOSPICES FACE IN SERVING IN LONG-TERM CARE FACILITIES DURING COVID
Kim Mooney is a Colorado-based thanatologist, hospice and bereavement expert, and founder of Practically Dying. Mooney is also author of “The Challenges of Providing Hospice Care in Long-Term Care Facilities During COVID-19.” The paper is a comprehensive review of these challenges, and a source of solutions in facing these challenges. Among multiple challenges the pandemic has created, Mooney says, there is a “particularly painful and contentious clash” in offering hospice care for facility patients. Indeed, hospice care has been “highly compromised as nursing homes have struggled to protect their residents.” From here, Mooney explores “both sides” and looks for solutions.
Both hospices and nursing homes, notes Mooney, share the goal of putting patients’ needs first. But with the rapidity which the pandemic engulfed us, there was not time to develop “collaborative strategies” together. Now we are called to address the needs. Grief, trauma and moral distress are high. CDC and WHO have both spoken about the “mental and behavioral emergencies that COVID-19 created.” And studies indicate that there will ongoing and “longstanding deleterious effects on families.”
The goals that dying patients consistently express are: “pain and symptom management;” “preparation for death;” “achieving a sense of completion;” “decisions about treatment preferences;” and, “being treated as a ‘whole person.’” Though only the first goal relates to “medical management,” all the other goals are core to what hospices provide…..and goals that COVID-19 compromised.
Mooney works to identify some of the most difficult challenges that hospices and long-term care facilities have faced in their mutual work of serving their patients. She shares numerous stories of patient and family suffering because of restrictions made on visits by hospices and family members. Hospices, when concerned, could only file complaints…and often feared that doing so would further damage current relationships. The difficulties with these “compassionate visits” caused much grief for everyone.
Another disruptive factor hospices have faced is facilities’ inconsistent policies and implementation of policies. Again, she offers stories from the programs she spoke with in Colorado, her home state. “Clash in care, not in care goals,” is a third distressing factor. How patients were treated and informed and kept aware are areas of concern Mooney addresses. Yet another factor of concern is infection control. Mooney agrees the residential facilities were faced with criticism. As physician Joanne Lynne says, “The scorn heaped on nursing homes for their infection and death rates is for the most part, misplaced.” Not one facility Mooney spoke with “denied that patient rights were violated” in the lockdowns.” And patient safety was their first responsibility. The risks of having higher infection rates extended to allowing hospice nurses to visit.
Staff of facilities suffered grief and trauma, and many left their jobs. This “devastation in the long-term care community culture” is another factor of concern. Further, there was “no time to regroup.” Fears for patients’ safety, fear for personal safety, and staff shortages all added to the crisis.
One complicating factor in Colorado related to conflicting guidance. Colorado Healthcare Ethics Resources developed “Crisis Standards of Care” for hospices. It reviewed protocols, legalities, and standards for hospices. Long-term care facilities, on the other hand, were reporting under Emergency Preparedness Plans that were in place. The leaders of these facilities felt they had no “clear and confident guidance.” Mooney shares a number of the tough questions that facility leaders continually faced.
Mooney says, “Visitation policies will remain one of the great tragedies of this pandemic.” This grief is felt by all providers, patients and families. Some of the creative efforts made to minimize this grief are described, and suggestions are offered.
Mooney offers a number of potential solutions to help as we move on. Some of these suggestions include having hospice staff meet with the ombudsman in each facility to discuss problems faced; designating a single staff member as communicator with hospice patients and families; meeting at least yearly to better understand one another’s industry and rules; making “formal agreements to prioritize meetings between hospice reps and facility management:” and, sharing educational tools.
Mooney’s grasp of the issues, as demonstrated in the paper, and her discussions with Colorado healthcare leaders, offers insight and ideas for moving forward. (Practically-Dying, https://practically-dying.com/wp-content/uploads/2021/09/THE-CHALLENGES-OF-PROVIDING-HOSPICE-CARE-IN-LONG-TERM-CARE-FACILITIES-DURING-COVID-19.pdf)
* The Office of Inspector General (OIG) found that “Medicare Improperly Paid Suppliers and Estimated $117 Million over 4 Years for Durable Medical Equipment, Prosthetics Orthotics and Supplies Provided to Hospice Beneficiaries.” OIG conducted the audit to know if durable medical equipment, prosthetics, orthotics, and supplies (DMEPOS) were properly paid when provided to hospice beneficiaries. In 121 of 200 samples, Medicare was found to have paid improperly for DMEPOS items for hospice beneficiaries. Top reasons for these errors include lack of awareness by suppliers that DMEPOS items were going to hospice beneficiaries, ineffective system edit processes, and supplier errors in adding modifiers. OIG recommended to CMS to 1) improve prepayment edit by educating DME contractors; 2) to engage in a postpayment edit; 3) to “direct the DME and hospice Medicare contractors, or other contractors as appropriate, to conduct prepayment or postpayment reviews of supplier claims billed with the GW modifier;” and 4) to “ study the feasibility of including palliative items and services not related to a beneficiary’s terminal illness and related conditions within the hospice per diem.” CMS agreed with the first and third recommendations, but “did not concur” with the second and fourth. OIG then revised the fourth recommendation but maintains that the second one is valid. (OIG, 11/16, https://oig.hhs.gov/oas/reports/region9/92003026.asp)
* Mayo Clinic has a Q&A podcast titled “The important role of hospice care.” The podcast focuses on the life of Ashley Evenson, who spent her whole life with Cockayne syndrome. Ashley, who died in 2019, was a hospice and palliative care patient. Her mother, Lynn Evenson, tells Ashley’s story to help people “‘understand and learn what hospice is really about and how it can make a big difference—not just for the patient but for the caregiver as well.’” The podcast is online at the link below. (Mayo Clinic, 11/17, https://www.youtube.com/watch?v=GEPBtQY4jO8&ab_channel=MayoClinic )
* “Proactive Hospice Care: 3 Steps for Moving Up the Referral Food Chain” is a white paper offered by Enquire. The paper offers advice on educating those who refer patients to hospice, creating a “liaison outreach playbook,” and managing referrals in ways that guarantee fast response. The eight-page document is available online, at the link below, and is offered free to those who register to receive it. (Enquire, https://www2.enquiresolutions.com/resources?&confirmation_url=https://www2.enquiresolutions.com/submit/download/5615 )
* NHPCO issued a press release thanking the U.S, Senate “for officially recognizing the essential work of hospice and palliative care providers across the U.S.” A Senate Resolution recognizes November 2021 to be National Hospice and Palliative Care Month. (NHPCO, einpresswire, https://www.einnews.com/pr_news/556736229/nhpco-statement-on-u-s-senate-s-national-hospice-and-palliative-care-month-resolution)
* USA Today tells of a hospice nurse who posts videos via TikTok. In her posts, she shares what life is like for people near life’s end. Known as Hospice Nurse Julie, she has over 400,000 followers. She has shared about the “rally” near life’s end that many patients experience, and the experience of patients who have visitations from “dead relatives, friends and even pets.” (USA Today, 11/20, https://www.usatoday.com/story/news/nation/2021/11/20/nurse-tiktok-videos-unexplained-death/8663818002/)
PALLIATIVE CARE AND END-OF-LIFE NOTES
* An article in Times News Express explores the growth of digital end-of-life services and the questions some people have about the ethics of these companies. The companies approach end of life from a variety of perspectives. One example is HerefterAI, “a subscription service that enabled users to develop bots of their own loved ones,” including use of avatars. Another example is GoodTrust that offers end-of-life services. “Earlier this month, academics and entrepreneurs in the death tech industry gathered to explore these ethical issues at the 2021 Digital Legacy Conference.” The article explores the developing field and the challenges ahead.(Times News Express, October 2021, https://timesnewsexpress.com/news/finance/banking/digital-end-of-life-services-are-a-booming-business-not-everybody-says-thats-a-good-thing/)
* Palliative Care Physician Michael Pottash writes in Pallimed about “The Limits of Advance Care Planning.” Responding in part to an October article in JAMA that questions the value of advance care planning, Pottash adds that “focusing on advance directive may not even be ethical” because it puts people in the position of making decisions now for their future, more disabled selves. JAMA physician authors R. Sean Morrison, Diane E. Meier, and
Robert M. Arnold address issues in their “What’s Wrong With Advance Care Planning?” The JAMA article, says Pottash, advises that planning should focus on choosing surrogates and “training clinicians to have ‘high-quality discussions” in the moment” when actual decisions must be made. An abstract of the JAMA article, as well as some responses to it, are posted at the second link. (Pallimed, 11/22, https://www.pallimed.org/2021/11/the-limits-of-advance-care-planning.html; JAMA, 10/8, 2021;326(16):1575-1576. doi:10.1001/jama.2021.164300
GRIEF AND ADVANCE CARE PLANNING NOTES
* With a grant from the American Nurses Foundation, five associations, including the Hospice and Palliative Nurses Association, created a series of five short videos on dealing with grief. The videos are online at the link below. (HPNF, https://www.youtube.com/playlist?list=PL49Ueck36ETiYL_cCpeB236TZJCTIkjfi)
* Mourning Hope Grief Center offers free 10-week grief sessions to those “dealing with the death of someone close to them.” The “Hospital Room” is a special room set up to resemble a hospital room. The room allows children “a chance to revisit a place that may have been traumatic so they can move forward in their grief journey.” Bryan Health partnered with Mourning Hope to help add props to the room. The story and video are online at the link below. (1011 NOW, 11/9, https://www.1011now.com/2021/11/09/mourning-hope-grief-centers-hospital-room-helps-children-grieve-process-traumatic-hospital-experiences/?fbclid=IwAR2kHJqTbhJSelm7D4Hr28d8hOsKVxcoPEZmvzr-zmP5HaxqNpwXhu0sVWU)
* Geripal features a video podcast with physician Wes Ely. Ely is a critical care physician who experienced “horror and shame at discovering that his ICU practice of heavily sedating patients for days on end was leading to lifelong physical, cognitive, and psychological harm…” Ely has been on a “redemptive journey” of finding better ways to care for ICU patients. Ely is author of “Every Deep-Drawn Breath: A Critical Care Doctor on Healing.” A summary of the podcast, a transcript, and the podcast are all online at the length below. (Geripal, 11/18, https://geripal.org/every-deep-drawn-breath-podcast-with-wes-ely/#transcript)
* C-TAC’s recent summit on advanced illness care gathered leaders of fields working to improve care for the seriously ill. The two-day virtual conference, says C-TAC, found numerous organizations making “bold commitments” to work toward this goal. The summit is on-demand through 1/21/22 at the link below. (C-TAC, 11/17, https://www.thectac.org/2021/11/field-leaders-commit-to-progress-at-c-tac-national-summit/)
* “Bringing Patient-Focused Palliative Care to Kidney Cancer” appears with Cancer Network. The article calls for a need for more research in palliative care in kidney cancer patients. Little data, says the article, currently exists. The article reports on a presentation at the 2021 International Kidney Cancer Symposium: North America. One physician says, “‘When patients actually understand what’s happening, they make different choices. When patients have accurate prognostication understanding they chose differently.” The physicians call for good communication and shared decision-making, with patients actively involved. The article explores two frameworks for communications. (Cancer Network, 11/16, https://www.cancernetwork.com/view/bringing-patient-focused-palliative-care-to-kidney-cancer)
* “Opioid regulations may result in poorer pain management for people with terminal cancer” appears in Healio News. The article explores how the opioid crisis has impacted pain management. Between 2007 to 2017, end-of-life patients receiving at least one opioid medication declined from 42% to 35.5%. Total opioids given to persons near life’s end has declined 38%. And the mean dose of medication fell by 24.5%. “‘Many patients with advanced-stage cancers only receive mild analgesics, which are completely inadequate for the very severe pain that they experience. Opioid regulations may exacerbate the heartbreaking problem of undertreatment of cancer pain at the end of life.’”
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