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HOSPICE NEWS NETWORK Recent News on End-Of-Life Care __________________________________________ 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.” 1 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.
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