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

Volume 22, Number 21 May 29, 2018

A Service of Hospice & Palliative Care Association of NYS

DEATH CAFES, ANGELS, AND CHOICES AT THE END OF LIFE

Anita Neff is an end-of-life doula or, as she says, “a death angel.” Her role is to sit with the dying and their families during the dying process, but she also deals with practical matters like an up-to-date will or passwords for online accounts.

Her efforts are profiled in “Going this way? Death is still inevitable, but 'angels' and cafes want to change our last days” published with The San Diego Union-Tribune. Writer Peter Rowe describes the personal touches Neff provides for the dying—from poetry readings to live music and even “the soothing aroma of fresh wood shavings.”

“Everybody has their own thing,” she says.

Neff is part of a loosely-linked movement that questions the dying process and what really defines a “good death.” Its practitioners come from a wide range of beliefs, or ascribe to none at all. “These activists are united by a common desire to make dying less painful and more dignified,” Rowe writes.

Rowe spoke with Pacific Beach Christian Church’s senior pastor Rev. Brian Daly, who says, “Hospice used to be one of those words that had a stigma attached to it. That has changed completely.” Still, within the world of peaceful transitions, some topics are controversial.

Dr. Robert Uslander has advocated for the End of Life Options Act, a California law permitting terminally ill patients with capacity to make medical decisions to be prescribed an aid-in-dying medication. Dr. Uslander emphasizes that patients end their own lives peacefully, and that they “take the medication on their own, willingly, voluntarily.” The debate over the topic was reignited this month as California Superior Court Judge Daniel A. Ottolia struck down the law.

Within Death Cafes, a space in 56 countries where people congregate to discuss the end of life, Rowe says conversations are safe, thoughtful, and emotional. One session was hosted by Barbara Bailey, a palliative and hospice care nurse educator. Guests talked over questions like “What would you like on your tombstone?” or “What are the most important things to prepare before your death?”

“I see there’s so much fear,” says recent widow and Death Cafe attendee Gloria Andrade, “and no one wants to talk about it. This is comforting and it takes away the fear.”

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Dr. Uslander also praises the conversations as a positive thing, “helping to advance the conversation, making the conversation about death and dying more comfortable and acceptable.” It’s also a special period for those nearing death, he says. “I experience this as a very spiritual and sacred time,” she said. “I see a person dancing between two worlds — whatever that next world is or is not.”

We must all face the end of life at some point. But, Neff reminds us, “There’s no one way.” (San Diego Union-Tribune, 5/20, www.sandiegouniontribune.com/lifestyle/sd-me-death-trends- 20180517-story.html)

A SLOW ROAD TO HONORING DNR’S DURING SURGERY

Charles Harris was diagnosed with Parkinson’s disease in 2012 at the age of 90. The next year, he signed a “do-not-resuscitate” (DNR) that prohibited the use of intubation, mechanical breathing machines, and artificial feeding tubes. The official physician orders for life-sustaining treatment (POLST) were in place to ensure that his patient’s rights were respected during treatment. However, those wishes weren’t honored when his heart stopped this March during a surgery to repair his hip at PeaceHealth St. John Medical Center.

Harris’ situation was the focus of an article in Longview, Washington’s The Daily News. Instead of following the DNR, the medical team performed CPR, which cracked Harris’ sternum and placed him in the ICU. He was connected to a breathing machine, fed through a tube, and put in a coma-like state.

His family suspects he suffered a mild stroke. When he was conscious and told what had happened, “he literally broke down crying,” his daughter-in-law Patricia Harris remembers. “He was angry they brought him back.” The next six weeks were spent in severe pain.

Don Harris was faced with the choice of whether to allow his father to recuperate and have another surgery, or let him die. He felt stuck in the decision and pressured by physicians to consent to another procedure. “They kept saying, ‘You don’t want to kill your dad, do you?’,” he remembers.

Don and his sister Nancy consented to the surgery, but when the DNR order was brought up, they were told the team would “administer life-sustaining medication” and provide the heart “at least one pump if it stopped again.” It was hospital policy to rescind DNR orders during surgery, they were told. Charles Harris’ surgery was successful, but he was left weak, with a failing short- term memory, and in excruciating pain.

“I don’t know how many times he cried because he was hurting so much,” Don said.

Dr. Eleen Kirman, St. John’s chief medical officer, says the hospital adopted an official policy in 2017 requiring surgeons to respect patients’ DNR orders and discuss POLST forms prior to surgery. Kirman is an anesthesiologist, and that DNR orders are routinely suspended during surgery. However, in recent years the American Society for Anesthesiology and the American College of Surgeons have developed guidelines stating that patients have a right to choose

2 whether to be resuscitated during surgery.

“Really now our goal is to have the surgeon and the anesthesiologist have that discussion with a patient who has come into the hospital and said do not resuscitate me,” she says. “No anesthesiologist wants to bring someone into the operating room and see their heart stop and say, ‘OK, we’re done.’ But this is the evolution of patients’ rights, and we need to honor their wishes and re-educate everybody.”

Don Harris says he hopes others will speak up at hospitals to get the care they need. “We wanted to get the word out,” he says, “so people don’t have to go through the same thing.” (The Daily News, 5/14, https://tdn.com/news/local/local-patient-died-in-pain-after-do-not-resuscitate- wishes/article_eb7b4ba0-130c-59d5-b89c-305805e3dac2.html)

ADDRESSING RACIAL DISPARITIES IN HOSPICE CARE

The racial disparity of hospice patients is the focus of a new article from Home Health Care News. “VNSNY, Vitas Want to Fix the Racial Disparity in Hospice Care” opens with a jarring statistic: 87% of hospice patients are white, according to the National Hospice and Palliative Care Organization (NHPCO). Those numbers aren’t moving towards representation of U.S. demographics, but in fact the percentage of white hospice patients has risen by over 10% in the past few years.

Providers agree, Home Health Care News writes, that the use of hospice among minorities is far too low. In an interview with Diane Deese, vice president of community affairs for Vitas, Deese said they’re “keenly aware” of the underutilization. She cites “misconceptions about hospice” as a significant issue in accessing those services at the same rates as white patients.

The attention to this issue coming from Vitas is important, as the company is the largest end-of- life care provider in the United States. Michelle Drayton, VNSNY’s director of hospice and palliative care outreach for Manhattan and the Bronx, says, “Across the board, when we’re talking about people of color…there are cultural barriers and systemic barriers that contribute to that number.”

In 2015, VNSNY launched Project Hope, an outreach program focused on New York’s Harlem neighborhood. One misconception they targeted was the idea that hospice is offered exclusively at a facility. “That misperception can cause anybody to shy away from hospice, but it can be especially restrictive in Harlem, where people often have strong attachments to their historic community,” Home Health Care News says.

Research also suggests that many minorities are offered hospice too late, resulting in much shorter stays. “We went into [Harlem Hospital Center], worked with physicians and discovered that there was this absence of having that hospice-as-an-option discussion with patients,” says Drayton. The hope is to shift hospice from a last-resort to something that’s integrated into a plan of care. This strategy has seen increased numbers—rising from five referrals in 2014 up to 50 referrals and 25 admissions in the first quarter of 2018 alone.

Hospice care has been linked to lower health care spending overall, so efforts like these are not

3 only equitable, but could have wider financial benefits.

“Appropriate hospice utilization is an effective use of resources for acute care providers and payers,” says Joel Wherley, executive vice president and chief operating officer of Vitas. “This includes reducing readmissions, mortality rates and use of intensive services through use of hospice and palliative care options over continued aggressive treatments.” (Home Health Care News, 5/21, https://homehealthcarenews.com/2018/05/vnsny-vitas-want-to-fix-the-racial- disparity-in-hospice-care)

HOSPICE & END-OF-LIFE NOTES

* Vanity Fair highlights Kate Middleton’s support of Children’s Hospice Week. Just days after the royal wedding, the Duchess of Cambridge released an open letter supporting the campaign to raise awareness for children’s palliative care. “Kate focused on this year’s theme, ‘Life’s Short,’ and encouraged supporters of the effort to ‘spread joy and positivity across the U.K.’ She went on: ‘Spending quality time together is such an important part of family life, and for me, as a mother, it is the simple family moments like playing outside together that I cherish.’” (Vanity Fair, 5/23, www.vanityfair.com/style/2018/05/kate-middleton-supports-childrens-hospice-week)

* A new study published in JAMA Internal Medicine finds a change in trajectory of end-of-life care costs within the Medicare fee-for-service population around 2009. 2004 – 09 saw substantial increases in costs, but those dropped significantly between 2009 – 14. “End-of-life care consumes substantial Medicare resources: despite representing about 4% of Medicare fee-for- service enrollees, decedents accounted for about 40% of overall annual per-capital Medicare fee- for-service expenditures. The good news is that this same population accounted for the majority of per-capita expenditure reductions between 2009-2014.” The researchers have proposed a study to ARHQ to determine why this is happening. “Seemingly, causes could be due to changes in supply and type of providers (for instance, after passage of the Accountable Care Act, providers might have turned their attention toward new enrollees and away from Medicare patients near the end of life; alternatively, the growth in numbers of Palliative Care physicians might result in more conservative treatment being provided). But another possibility is that the findings are due to changes in the demand for healthcare services.” (Medical Research, 5/23, https://medicalresearch.com/author-interviews/rate-of-end-of-life-care-medicare-spending- falls/41834)

* End-of-Life University presents an interview with attorney and death midwife Alua Arthur titled “Finding Peace in Life and Death.” Arthur discusses how she helps people find peace by planning ahead for the end of life. A replay of the interview is available online. (End-of-Life University, 5/24, www.instantteleseminar.com/Events/107129262)

* Hastings Center President Mildred Z. Solomon calls for “moral leadership” to improve end-of- life care in two recent named speeches delivered at Columbia University and West Virginia University. She calls on her audience to broaden their usual ethical framework beyond “thin” notions of autonomy to a more robust relational ethics. “In many cases, patients are not actually making decisions but rather simply yielding to what seems expected of them,” she said. “Too often, clinicians act as if respect for autonomy equates with holding back on their own views; but when we just turn to patients and ask, ‘what do you want?’ without context, well, that’s a form of

4 abandonment… Offering a recommendation is not a violation of patient autonomy.” She included practical recommendations, including enhanced care coordination by interdisciplinary teams and payment reform. (The Hastings Center, 5/2018, www.thehastingscenter.org/news/hastings-center-president-calls-moral-leadership-improve-end- life-care)

PALLIATIVE CARE NOTES

* A new article with the Journal of Palliative Medicine set out to describe the experiences and opinions of caregivers about bereavement contact from healthcare providers, concluding that “bereavement contact is well received and may be missed if not provided.” They found that 50% of caregivers received bereavement contact, and of those the themes “contact reflects caring,” “contact offers support,” and “contact facilitates closure” were prominent. “Overall,” the researchers write, “contact was appreciated by those who received it; for those who did not, reactions included “rationalization, ambivalence, and regret. No negative consequences of contact were reported.” (Journal of Palliative Medicine, 5/16, www.liebertpub.com/doi/abs/10.1089/jpm.2017.0530)

* Senior Homes highlights “8 Advantages of At-Home Palliative Care.” 1) Wider access to dedicated professionals 2) Pain management is handled appropriately 3) A focus on both quality and quantity of life 4) The whole household’s needs are balanced 5) Customized and consistent care 6) Daily support at lower costs 7) Enhanced Relationships and preserved dignity 8) Longer- term support. The article quotes figures from the Center to Advance Palliative Care and hears from Lannette Cornell Bloom, author of Memories in Dragonflies, Simple Lessons for Mindful Dying, and Dr. Lucy Kalanithi, a professor at the Stanford School of Medicine and member of the Coalition to Transform Advanced Care’s Board of Directors. (Senior Homes, 5/20, www.seniorhomes.com/w/8-advantages-of-at-home-palliative-care)

* A new study in the Journal of Palliative Medicine concludes that family caregivers “would benefit from additional tools to address a patients’ psychological symptoms at end of life…caregivers need a range of coping skills as alternatives to escape-avoidance coping.” In their research, the authors sought to “evaluate mediational relationships among burden experienced by hospice FCGs because of symptom management demands, caregivers' coping responses, and caregivers' psychological distress.” The study, titled “Relationships among Symptom Management Burden, Coping Responses, and Caregiver Psychological Distress at End of Life,” uses surveys provided quantitative data from FCGs of hospice patients receiving services from a large, non-profit community hospice in the Mid-Southern U.S. (Journal of Palliative Medicine, 5/4, https://www.liebertpub.com/doi/10.1089/jpm.2017.0584)

* New research in the Journal of Palliative Medicine finds that “families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team.” The researchers began by recognizing that recommendations exist for how medical teams guide interfamily communication haven’t been established for instances when EOL care is underway or anticipated for a pediatric patient, best practices have not been established through research. Their review aimed to provide a summary of research on the subject. They note 65 studies suggesting that “when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death.” Further, “despite

5 current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent…parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions.” (Journal of Palliative Medicine, 5/18, www.liebertpub.com/doi/abs/10.1089/jpm.2017.0307)

* With such great numbers of people saying they’d prefer to die at home (70% according to a California Health Care Foundation survey), VC Daily says palliative telemedicine can allow patients that dignity and privacy. “Palliative care provides an extra layer of support alongside direct, disease-related medical treatments,” the article says. “With an iPad by their bedside or a webcam hooked up to their laptop, people can receive their well-wishers no matter where life’s journey has placed them. It may even be more restful to have a series of one-on-one, face-to-face chats by video than deal with a bustling house of noisy guests.” (VC Daily, 5/22, www.videoconferencingdaily.com/healthcare/palliative-telemedicine-allows-patients-the- dignity-and-privacy-of-remaining-in-their-home)

* Columbia University’s School of Nursing is launching a palliative care education program to reflect development of competencies and recommendations from the American Association of Colleges of Nursing (AACN). “AACN is encouraging palliative care education of nursing students in pre-licensure programs. Both the call-to-action and the program come at a time when health care professionals are bracing in anticipation of an unprecedented number of Americans who are or will be living with one or more chronic, life-limiting illnesses.” Penelope Buschman, MS, an assistant professor of clinical nursing, says, “Palliative care goes beyond having a strong knowledge of physiology and includes understanding the way human beings react to their illnesses and to one another.” (Columbia University School of Nursing, 5/2018, http://nursing.columbia.edu/new-program-brings-palliative-care-philosophy-all-columbia- nursing-students)

* Palliative care reduces the risk of suicide among veterans with lung cancer, according to findings presented at the American Thoracic Society International Conference suggest. Donald R. Sullivan, MD, MA, assistant professor of medicine at Oregon Health & Science University, and researchers reviewed VA inpatients, outpatient, and free-basis encounter data from 2007 - 13. Among 20,000 patients, the results were drastic: “Palliative care appeared associated with an 82% reduced likelihood of suicide.” Dr. Sullivan says the VA system is doing a better job than other health care systems, but there’s much room for improvement when it comes to suicide risks among cancer patients, especially those with advanced-stage disease. (Healio, 5/21, www.healio.com/hematology-oncology/lung-cancer/news/online/%7B45dfde10-fa5c-4734- a85d-914d1671ede0%7D/palliative-care-reduces-suicide-risk-among-veterans-with-lung-cancer)

* Insurance giant Anthem plans to acquire Nashville-based palliative care provider Aspire Health. Becker’s lists four things to know about the acquisition: 1) The financial terms were not disclosed, but the deal is expected to close in the third quarter of 2018. 2) Aspire is the nation's largest non-hospice, community-based palliative care provider. It operates in 25 states and contracts with over 20 health plans. The company was founded by former U.S. Sen. Bill Frist, MD, and Brad Smith, who is now CEO of Aspire. 3) “Aspire Health shares our perspective on the increasingly important role of integrated care and has built a unique model that provides palliative care and support services for patients and their families,” says Anthem President and CEO Gail Boudreaux. 4) Anthem appears to be joining its rivals with its move into the medical

6 care business. Humana recently agreed to purchase a hospice operator and an acute care provider. United Health Group's physician arm, OptumCare, employs or is affiliated with about 30,000 physicians. (Becker’s Hospital Review, 5/23, www.beckershospitalreview.com/payer- issues/anthem-to-acquire-palliative-care-provider-aspire-health-4-things-to-know.html)

* Palliative care training helps doctors steer cancer patients away from major surgery, Reuters reports. That assertion comes from from a survey of over 100 doctors about how they would respond to various scenarios. Those findings were published in Surgery. “We’ve seen a significant proportion of patients who go to the emergency room or intensive care unit with terminal malignancy die in the ICU,” says coauthor Dr. Richard Bold of the University of California, Davis Comprehensive Cancer Center in Sacramento. Dr. Mustafa Raoof of the City of Hope Cancer Center in Duarte, California, who isn’t affiliated with this study, says, “many in the field already know that this is a critical deficiency” and that it’s “important to remember that anyone facing a life-threatening diagnosis should be eligible for palliative care.” (Reuters, 5/22, www.reuters.com/article/us-health-terminal-care-surgery/palliative-care-training-helps-doctors- steer-cancer-patients-away-from-major-surgery-idUSKCN1IN2NN)

ADVANCED CARE PLANNING NOTES

C-TAC announces that Tim Bauerschmidt and Ramie Liddle, authors of Driving Miss Norma: An Inspirational Story About What Really Matters at the End of Life, will serve as its inaugural Caregiver Fellows. The fellowship is designed to raise awareness of the concerns of family caregivers as well as provide solutions to some of the most important issues caregivers face. Their book chronicled the story of Miss Norma after her death in 2016: “After losing his father and learning of his mother’s cancer diagnosis, Tim and his wife Ramie traveled the country with Norma, helping her live the way she wanted to when it mattered most. Accompanied by their Standard Poodle, Ringo, the family set out on an inspiring adventure.” (C-TAC, 5/22, www.thectac.org/2018/05/driving-miss-norma-family-joins-c-tac-as-inaugural-caregiver- fellows)

PHYSICIAN ASSISTED SUICIDE NOTES

* An appeals court has upheld a ruling against California’s assisted suicide law, NPR reports. “California's Fourth District Court of Appeals…refused to stay last week's decision by the Riverside County Superior Court, which ruled that state lawmakers should not have passed the law during a special session on health care funding. However, the constitutionality of the law itself — passed nearly three years ago — was not challenged.” Leading up to the ruling, the subject received state and national coverage including The San Diego Union-Tribune’s “Your Opinions” article arguing that “Assisted suicide: Death with dignity law must be protected.” (NPR, 5/24, www.npr.org/sections/thetwo-way/2018/05/24/613940700/court-upholds-ruling- against-californias-assisted-suicide-law; L.A. Times, 5/21, www.latimes.com/local/california/la- me-ln-end-of-life-becerra-20180521-story.html; San Diego Union-Tribune, 5/20, www.sandiegouniontribune.com/opinion/letters-to-the-editor/sd-death-dignity-suicide-utak- 20180518-story.html)

* “Terminally ill New Yorkers cannot get help from doctors when they want to die,” reports The

7 Altamont Enterprise. The article profiles two local doctors—Margaret Craven Snowden and Mary Applegate—who are fighting for laws to allow terminally ill patients to have more control over their deaths. The expansive article covers their careers and membership in Death With Dignity-Albany. It touches on MOLST, New York state bills, and Democratic politicians leading the political battle in the state. Interspersed are personal stories and relevant legal cases. (The Altamont Enterprise, 5/24, https://altamontenterprise.com/05242018/terminally-ill-new-yorkers- can%E2%80%99t-get-help-doctors-when-they-want-die)

OTHER NOTES

* Scientific American asks, “How multiple parties with a child’s best interests in mind disagree so violently about whether he or she is in distress?” This question is at the core of fatal illnesses in children and the nature of suffering. As a pediatric oncologist and palliative care clinician, the writer says distress stems from two sources: uncertainty in a diagnosis and something “possibly more complex”—personal perceptions of suffering. This issue, the article concludes, is “not just about differing legal systems, but more fundamentally about the nature of suffering in children, and how we perceive, address and honor that suffering in the context of a child’s relationship with her parents.” (Scientific American, 5/25, https://blogs.scientificamerican.com/observations/children-fatal-illness-and-the-nature-of- suffering)

* Houston’s MD Anderson Cancer Center unveils a new plan under president Dr. Peter Pisters that calls for more patient-centered care and “an MD Anderson-branded way of approaching end-of-life care.” In his first major address since taking over the job in December, “Pisters showed a slide of an elderly cancer patient receiving oxygen, hooked up to machines and generally receiving aggressive end-of-life treatment, then another of an end-stage patient comfortably resting at home with his wife and hospice worker. He said MD Anderson needs to move away from the first to the second.” The speech was much anticipated, and Pisters followed the leadership of Dr. Ron DePinho, whose term began with a “Moon Shots” promise to cure difficult cancers, only to become “mired in faculty unrest over their lack of input in decision- making, questions about conflicts of interest and financial losses that culminated in mass layoffs.” In contrast, Pisters hinted at no major new initiative like the Moon Shots Program, but rather established incremental goals: “We need a purpose-built access center designed specifically to allow patients to come into our organization,” Pisters said. “Slowly but surely, we need to move to a state where we can see patients today and tomorrow.” (Houston Chronicle, 5/24, www.houstonchronicle.com/news/houston-texas/houston/article/New-president-calls-for- more-patient-centered-MD-12940932.php)

* Congress has voted to approve a version of “right-to-try” legislation, sending the hard-fought bill to Trump’s desk. The House passed the legislation 250-269, and is expected to be signed by President Trump, who repeatedly supported the measure. Supporters have called it a “beacon of hope” for desperate patients. However, a coalition of patient groups, including the American Cancer Society Cancer Action Network, Friends of Cancer Research, and the National Organization for Rare Disorders warned in a letter to lawmakers that “The legislation would roll back essential patient safeguards and could result in patients being harmed by unproven, and potentially unsafe, therapies…Furthermore, the legislation would significantly restrict FDA’s ability to stop access to an experimental therapy and would remove expert consulting requirements on dosing and other important safety measures currently provided by FDA.” STAT

8 call the bill’s passage “a win for conservative and libertarian groups like the Koch-brothers- backed Americans for Prosperity and the Goldwater Institute.” (STAT, 5/22, www.statnews.com/2018/05/22/house-vote-right-to-try; NPR, 5/22, www.npr.org/sections/health-shots/2018/05/22/613106777/house-passes-right-to-try-bill-for- experimental-drugs)

* Time reports that 2018 will again see plenty of hurricanes as the season begins on June 1. “NOAA said there’s a 70% likelihood of 10 to 16 named storms forming this year. Of those, five to nine of the storms will form into hurricanes, with winds of 74 miles per hour or above. One to four of the storms could turn into major hurricanes, reaching above a category 3, with winds at 111 miles per hour or higher.” This rate hovers around the average. (Time, 5/24, http://time.com/5289878/2018-atlantic-hurricane-season)

* Healthcare workers are sharing healthcare data without the proper security at an alarming rate. “87 percent of healthcare workers admit to using non-secure email to send sensitive information, including PHI, according to survey data provided to HealthITSecurity.com by Kickstand Communications, which conducted the survey for secure file sharing services firm Biscom.” Training does not seem to be the issue, according to those surveyed; 92% reported being trained on secure document delivery tools. 25% even said that their organization’s security policies are good compared with employees working in financial services. “The survey’s results uncover some interesting factors that contribute to non-compliance,” says Biscom CEO Bill Ho. “It would surprise most companies who have made major investments in security that so many people just fall back to the easiest method, namely sending confidential messages and files through email.” When asked why they didn’t comply, respondents cited “complexity” as the biggest challenge—60% said they simply “do what is easiest.” (HealthIT Security, 5/21, https://healthitsecurity.com/news/most-healthcare-workers-admit-to-non-secure-healthcare-data- sharing)

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.

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