______HOSPICE NEWS NETWORK Recent News on End-of-Life Care

Volume 22, Number 32 August 14, 2018

A Service of & Association of NYS

NAHC SAYS IT WANTS TO LEARN FROM THE NRA

“Why NAHC Wants to Become the NRA of Home Care,” is an article in Home News. “It’s not the ideal comparison, according to National Association for Home Care & Hospice (NAHC) President William Dombi. But NAHC wants to be more like the NRA,” says writer of the article, Robert Holly.

National Association for Home Care & Hospice (NAHC) has a strategy to use the membership and action tactics of the NRA. Regardless of how one feels about the NRA, says the article, “Its influence on Capitol Hill cannot be debated.” Dombi says NAHC is pursuing a major strategic realignment to engage with its base and boost transparency.

The National Rifle Association is infamous for its ability to leverage its influence and membership into efforts that impact legislation. “When the NRA speaks, it has reverberations through D.C.,” Dombi says of the NRA’s influence. That power comes in part from its relatively simple organizational message that resonates with its members. As Home Health Care News puts it, “The NRA has built its momentum by convincing followers that gun ownership is a way of life and fundamental to the American experience.”

While the efforts of a gun-lobbying organization and one aimed at connecting healthcare don’t overlap, the strategies for connecting with their base could be, says the article. The NRA hasn’t tried messaging “through detached messages sent via mainstream media,” says Home Health Care. Instead, they use “persistent and clear communications sent through its own channels, included multiple magazines, online forums, newsletters and NRATV.” This direct messaging has turned into direct action by its members on the local, state, and national levels.

“For me, the real political success of the NRA is not money, not that money is not important or doesn’t matter—it does,” says Harry Wilson, a professor at Roanoke College. “The NRA’s real success comes from its membership and its ability to motivate its membership.”

With U.S. home care workers totaling over 2 million, NAHC has a huge potential pool of supporters. That number is still growing. The challenge will be to get employees involved in active pushes for the association’s goals. “We want the head of the home care or hospice company to filter things down to the staff level,” Dombi says. “When you’re looking at one CEO of a company that employs 3,000 people, we would prefer to get 3,000 messages sent to Congress rather than just one.”

1 Still, Wilson points out, the NRA’s strategy relies on asserting that its members are always in “the worst of time”—living at a moment where their rights are constantly under attack. It is perhaps the aging baby boomer population who will most actively mirror this feeling of immediate distress, and lead the effort for immediate legislative action. Right now, Wilson says, they’re largely an “untapped population” that could rally around NAHC issues. “They can sort of ring that bell,” Wilson says. “Almost like the environmentalist appeal, saying we’ve got this impending disaster out there.”

Lobbying efforts have increased during the past years, notes the article. “In 1998, in-home care providers and interest groups representing them spent at least $2.3 million on combined lobbying activities, according to publicly available data under the Lobbying Disclosure Act. In 2017, they spent at least $6.9 million.” Dombi asks, “‘Can we get to [the NRA’s] level of power? We can aspire to it,’ Dombi said. ‘We can take steps toward it, but I certainly think we can be quite powerful.’”

Alongside this push for engagement, Dombi says he hopes to boost transparency of NAHC efforts. Members have expressed concerns in this area, Dombi says, and NACH intends to share information about where finances are coming from and how money is spent. With these parallel efforts, the NAHC hopes to be poised to emerge as an even stronger force in D.C. (Home Health Care News, 8/6, https://homehealthcarenews.com/2018/08/why-nahc-wants-to- become-the-nra-of-home-care)

END-OF-LIFE CARE FOR AN AGING INMATE POPULATION

America’s incarcerated population is aging, raising the question of how we can provide for a rising number of inmates who are in need hospice care. In an article titled “As America’s Incarcerated Age, the Need for Hospice Rises,” Next Avenue explores the efforts of institutions to address the concern. Minnesota, notes the article, “launched its hospice program for inmates in 2006. The state’s department of corrections defers to hospice specialists at a third-party organization, HealthEast Hospice. Once approved, social workers counsel the inmate patient through pain, comfort management, nutrition and social needs.”

Also highlighted in the article is the Louisiana State Penitentiary prison known as Angola, which will enviably make decisions about end-of-life care options for the 80% of its 6,500 inmates serving life sentences. Both Minnesota and Angola, notes the article allows families to visit the dying inmates “in an attempt to replicate hospice practices as they would occur in the community.”

The “tough-on-crime” initiatives that brought mandatory minimum sentencing in the 70s and 80s helped ensure that prisons would find themselves in this position eventually. While The Pew Research Center has showed some states taking steps to decrease overall prison populations, prisoners over the age of 55 increased by 280% between 1999 and 2016.

“Everyone knows in our department that our offenders are getting sicker,” says Joan Wolff, the health services administrator at Oak Park Heights Correctional in Oak Park Heights, Minn. “They’re getting older and their sentences are getting longer.”

2 For many, hospice care seems to be a way to address both the needs of aging prisoners and the states that face logistical and budgetary concerns. At Angola, hospice patients are cared for in studio apartment-type rooms with basic amenities. “It gives the families and the inmate some privacy,” says Jamey Boudreaux, a social worker and CEO for the Louisiana-Mississippi Hospice and Palliative Care Organization (LMHCPO). “‘They have a bathroom in each one of those,’ Boudreaux says. ‘They’ve painted walls, and they put curtains on to try and take a little bit of the jail aspect away.’”

Still, a shadow hangs over the rooms, which Boudreaux says were once solitary confinement units, the site of inhumane treatment of Angola prisoners for over a century. “When an inmate came close to death [at Angola] they simply put them on a stretcher in a room so that they wouldn’t disturb anybody else,” Boudreaux says. “When they stopped moaning, they literally tied up the sheet [the person] was laying on, dug a hole, dumped their bodies and then covered them up.”

This led Boudreaux to join others in crafting the LMHCPO program for inmate volunteers to sign up for 40 hours of training to become part of a four-person rotation of hospice caregivers. The program has been so successful that it has inspired about 80 hospice programs nationwide. States like California and Nevada have built other volunteer models for non-hospice related medical programs as well.

Still, options exist outside of the wall of the prison. Some criminal justice advocates are pushing for “compassionate releases” for terminally ill inmates. Every state except Iowa has such compassionate release or conditional medical release for terminal illness in place, but “very few people are getting out” says Mary Price, the general counsel for Families on Mandatory Minimums (FAMM). “We really want to shine a light on the failings of these programs and spur lawmakers and policymakers to do a better job,” Price says. “Every program can stand improvement, and some could stand to be torn down and written right from the bottom up.”

Boudreaux urges for caution when considering releasing inmates. “‘While I like the idea of compassionate release,’ he says, ‘you have to make sure that it’s compassionate.’” Sometimes the most compassionate care is actually to stay within the prison, where the people you trust and have spent so much of your life with can care you for. “‘The guys— they know each other,’ he says. “‘They’ve been locked up together for 35 years together. That is their family.’” (Next Avenue, 8/3, www.nextavenue.org/greying-prisons-hospice)

HOSPICE NOTES

* Dave and Joan Rogers have established a $1million endowment fund to support Hospice Buffalo’s Center for Hospice & Palliative Care’s Essential Care for Children Program. The program provides home-based palliative care that helps manage symptoms and coordinate medical services, as well as providing psychosocial and spiritual support. “Joan and I are so moved by this important program,” Dave Rogers says. “We are both grateful and thrilled to be in a position to make this gift and establish this fund that will allow the program to grow and flourish for years to come.” (The Center for Hospice & Palliative Care, 7/12, www.hospicebuffalo.com/index.php?cID=793)

3 * A flesh-eating bacteria “once again highlights hospice’s dialysis dilemma,” writes Home Health Care News. Angel Perez, 60, came into contact with the vibrio vulnificus bacteria while crabbing in New Jersey. About one in four people infected with the bacteria do not survive. Medicare doesn’t pay for dialysis and hospice at the same time, so patients like Perez have to be willing to forgo potentially life-saving treatment to get hospice support. Perez did not choose hospice. NHPCO CEO Edo Banach is quoted in the article, saying, “Medicare generally does not pay for concurrent palliative and curative services. This is wrong… This is why we are working on building a health care delivery system that would allow for person-centered, interdisciplinary care that does not require a patient to forgo beneficial services because of a reimbursement structure.” (Home Health Care News, 8/6, https://homehealthcarenews.com/2018/08/flesh-eating-bacteria-case-once-again-highlights- -dialysis-dilemma)

* “Advanced heart failure (HF) patients who received HF-tailored hospice care used less healthcare, lived longer, and were less likely to die in the , according to a propensity score-matched Medicare analysis,” Medpage Today reports. The news comes from a study by Laura Gelfman, MD, MPH, of Icahn School of at Mount Sinai in New York City, and colleagues. The study was published in JACC: Heart Failure online. The patients enrolled in HF-tailored hospice averaged fewer visits, ICU stays, and days in the hospital. “Given these benefits of hospice for these patients, more patients should receive this comprehensive care,” says Gelfman. (Medpage Today, 8/8, www.medpagetoday.com/cardiology/chf/74481)

* A new study seeks to better understand EMS experiences when it comes to hospice patients. Only 30% of EMS providers in the survey indicated that they had received formal education on care for hospice patients, with paramedics receiving more education than EMTs. Dr. Keith Wesley points out that there simply aren’t enough papers published on this subject, agreeing with the author’s calls for expanded education and an evidence-based curriculum. Medic Karen Wesley says, “I think most would agree that the training needed and desired for the amount of ‘hats’ we’re required to wear is sadly lacking.” (JEMS, 8/3, www.jems.com/articles/2018/08/study-seeks-better-understanding-of-ems-experience-with- hospice-patients.html?c=1)

END-OF-LIFE NOTES

* A study published in Health Affairs concludes that variation in end-of-life spending based on location can be explained by availability of services and ' beliefs rather than patient beliefs. Nancy L. Keating, M.D., M.P.H., from Harvard in Boston, and her colleagues, studied data from patients with advanced cancer who were enrolled in fee-for- service Medicare. MedicalXpress writes, “Compared with those in lower-spending areas, physicians in higher-spending areas reported less knowledge about and comfort with treating dying patients and less positive attitudes about hospice.” (MedicalXpress, 8/7, https://medicalxpress.com/news/2018-08-factors-end-of-life-cancer.html)

* The End-of-Life University interviews Melissa Unfred, the “Modern Mortician.” Unfred shares how she “serves families by guiding them in choosing more environmentally friendly burial options and helping them arrange home funerals for their loved ones, including pets.”

4 Stream the audio online or follow the instructions to listen by phone. (End-of-Life University, 8/9, https://events.iteleseminar.com/?eventID=109334892)

* “Doctors should let their patients’ religious beliefs shine,” writes Christopher Zalesky for KevinMD. Drawing from his own experiences, Zalesky makes the case that, until recently, healers “would live out their calling within in the same cultural and religious milieu of the people for whom they were caring.” For doctors, that relationship is now much more complicated. “Our convenient convention of leaving religion at home is untenable when your place of work is where many people will walk through their darkest days,” Zalseky writes. Instead of “feeling frozen” when confronted with a patient’s spiritual beliefs, he offers a different approach: “Not deflecting, not downplaying, but allowing patients and families to stand upon the support they use in their most challenging days.” Zalseky writes, “People in these moments are not asking for our philosophical viewpoint or religious manifesto. They are asking for comfort and connection with another human being who is in that moment with them.” (KevinMD, 8/3, www.kevinmd.com/blog/2018/08/doctors-should-let-their-patients-religious- beliefs-shine.html)

* Dr. Jeffrey M. Drazen writes in the New England Journal of Medicine about the life lessons he learned from his brother Paul, who faced his own death. He offers personal stories about Paul’s diagnosis, activities in a congregation, and even his daughter’s wedding to share three lessons: “Look back to learn how to look forward,” “Do your job,” and “Have a goal.” (New England Journal of Medicine, 7/11, www.nejm.org/doi/full/10.1056/NEJMp1808695)

* ABC News reports on the “new breed of doulas” that is helping reshape the culture surrounding death. The article profiles Carmen Barnsley, an Australian doula who says, “Some cultures do death beautifully. It's a reflection of the person's life, whereas I think we do it pretty poorly.” She’d like to change that by making it be perceived as the other side of the coin as birth. “We celebrate birth and we deny death,” she says. Barnsley stresses that death doesn’t have to be impersonal and that there’s no set process to follow. She offers a view of death as something that has been over-institutionalized. To address this, we need to talk about our wishes, break down the fear surrounding death, and start those conversations when we’re “young and well and alive and engaged.” (ABC News, 8/6, www.abc.net.au/news/2018-08-07/death-doulas-explain-why- young-and-old-need-an-end-of-life-plan/10051472)

PALLIATIVE CARE NOTES

* A new study in the Journal of Palliative Medicine uses complaints about hospice care in the U.S. to help highlight patient needs. The authors reviewed nearly 13,000 complaints collected between 2005 and 2015, and found that 45% of the complaints regarded quality of care, 20% of the complaints were about patients’ rights, and 14% of the complaints were about administrative or personnel concerns. Though rates of complaints vary widely from state to state, the study says complaint rates were “generally quite low.” Of agencies nationally, 88% had no complaints in a given year. “These data have the potential to convey insights about the care that hospice agencies provide,” the authors conclude. “Greater attention to the perspectives of patients and their families, even when focused on shortcomings in care, can help ensure transparency and accountability and promote higher quality hospice care.” (Journal of Palliative

5 Medicine, 8/10, www.liebertpub.com/doi/pdf/10.1089/jpm.2018.0125)

* Music therapists can help clients learn, heal, and connect through music. Seven Days profiles Marcie Hernandez, who visits patients like Hannah Waterman, a 16-year-old girl with a rare neurological disorder. The article describes music’s clinical past, which can be dated back to a 1789 article in Columbian Magazine titled “Music Physically Considered.” For patients and families, the emotions it brings out are a welcome relief. Waterman’s mother says, “When Marcie comes into our home, I see a whole other side of my daughter that I don't get to see on a regular basis.” (Seven Days, 8/8, www.sevendaysvt.com/vermont/music-therapists-help-clients- learn-heal-connect-through-song/Content?oid=18948616)

* More palliative care education is needed argue Drs. Angria Patel and Kelly Michelson in an opinion piece published with The Hill. “Palliative care providers can only help if they are invited to participate” in a patient’s care, they write. When they do get involved, studies show improvements in outcomes not just for patients, but their families. Training is key to improving access, they say, not “an afterthought, or a consideration after all other possibilities in care are exhausted.” (The Hill, 8/2, http://thehill.com/opinion/healthcare/400019-palliative-care-for- the-living-more-education-is-needed)

* A new study suggests that a meditation app could help hospice and palliative care clinicians. Researchers conducted a 6-week program that included five 10-minute meditations (Calming, Nature, Nourishing, Spaciousness, and Releasing). With 36 palliative and hospice healthcare professionals participating, researchers found that the program motivated “regular use, significantly improved interoceptive awareness, and reduced compassion fatigue and burnout.” According to the authors, “The cybermeditation program is scalable, optimizing both reach and efficacy and, once normed, can be adapted for other groups.” (Oncology News, 7/31, www.oncnursingnews.com/publications/oncology- nurse/2018/august-2018/meditation-app-benefits-hospice-and-palliative-care-clinicians)

OTHER NOTES

* While the majority of older homeless adults have a potential surrogate for health care decisions, few have documented advance care planning (APC) wishes, according to a new study in the Journal of the American Geriatrics Society. Rebecca L. Sudore, M.D., and colleagues studied about 350 homeless-experienced adults over the age of 50 in Oakland, California. They found that 61% of participants reported a potential surrogate, 21.5% had discussed APC, and 19% reported APC documentation. Higher odds of APC discussions were associated with having confidants (1-5) rather than none. Illicit drug use was associated with lower odds of APC documentation. (’s Briefing, 8/9, www.physiciansbriefing.com/Article.asp?AID=736250)

* An article in Market Insiders says the Journal of the National Comprehensive Cancer Network (JNCCN) has introduced new associate editors under the leadership of Editor-in- Chief Margaret Tempero, MD. Much of the focus on the Markets Insider article focuses on the expansion of the growing impact through both academic journals and popular magazines. “In recent weeks alone, JNCCN studies have been featured in The Wall Street Journal, U.S. News & World Report, Physician's Weekly, Everyday Health, and numerous other outlets. Studies have

6 featured topics such as: breast cancer survivor mammogram rates, the ‘’ on emergency colorectal cancer surgery, and the importance of communication around end-of-life care.” (Markets Insider, 8/6, https://markets.businessinsider.com/news/stocks/jnccn-journal-of- the-national-comprehensive-cancer-network-strengthens-editorial-focus-on-original-impactful- research-into-cancer-care-delivery-1027434547)

* Christine Whaley writes about her frustration in being denied the ability to access physician aid in dying in San Luis Obispo, California. Whaley shares that, at age 42, she feels too young to die, and says she has tried everything to stay alive. She says, however, “I became eligible several weeks ago for a prescription for medical aid in dying because my prognosis to live is six months or less (three to six months). Without the prescription, the tumor in my throat will likely tighten my airway, suffocating me. It’s scary. It’s terrifying.” Unable to get a prescription locally, she says, “ I called numerous doctors and hospice services to try and find a way to obtain a legal prescription before I found a medical provider in Los Angeles: UCLA. That is a long way to go, nearly 200 miles, for someone as ill as I am today.” She “prays” the courts figure this out soon, and says terminally ill people deserve better. (The Tribune (San Luis Obisbo), 8/8, https://www.sanluisobispo.com/latest-news/article216240770.html

Hospice Analytics is the national sponsor of Hospice News Network for 2018. 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.

Hospice News Network is published 45-46 times a year. Copyright, 2018. All rights reserved to HNN subscribers, who may distribute HNN, in whole or part, to provider members of the subscribers’ state organizations. If readers need further information, they should consult the original source or call their state association office. HNN exists to provide summaries of local, state and national news coverage of issues that are of interest to hospice leaders. HNN disclaims all liability for validity of the information. The information in HNN is compiled from numerous sources and people who access information from HNN should also research original sources. The information in HNN is not exhaustive and HNN makes no warranty as to the reliability, accuracy, timeliness, usefulness or completeness of the information. HNN does not and cannot research the communications and materials shared and is not responsible for the content. If any reader feels that the original source is not accurate, HNN welcomes letters to the editor that may be shared with HNN readers. The views and opinions expressed by HNN articles and notes are not intended to and do not necessarily reflect views and opinions of HNN, the editor, or contributors. Only subscribing state hospice organizations have rights to distribute HNN and all subscribers understand and agree to the terms stated here.

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