VIRGINIA TECH’S JACK DUDLEY FINDS QUALITY IN HOSPICE
The Roanoke Times published “Hospice gave Virginia Tech professor a good year longer to live.” Charles “Jack” Dudley, who taught for two decades in Virginia Tech’s honors program, felt the battle of two diseases: chronic obstructive pulmonary disease and diabetes. “I had these two doctors. They are wonderful, but they constantly debated whether I should breathe or go into a diabetic coma,” Dudley said, chuckling. “It scared the hell out of me. You had to be ready to die and keel over for hospice to come in.”
The article shares Dudley’s story of how comfort care from the Carilion Clinic hospice team changed his life. “When I first started hospice, I spent a good bit of time wishing I would just die because it was so hard to breathe, and getting through the day was so difficult,” Dudley said, “Over a period of time, these people have given me tools to make the difficulty less.”
Dudley’s life got increasingly difficult two years before he retired. He began having trouble breathing, began using oxygen, and then, the day after Thanksgiving 2012, his son died. “He was no longer able to teach or do much else. He said he suppressed a year of his life.”
Because of hospice, The Roanoke Times says, Dudley remained in his Blacksburg home, where the hospice team taught his wife Larkin how to care for him. His case manager drops by once a week to see how he’s feeling and set goals. Dudley also gets support from music therapy. “It’s hard to remember how you felt when you were 19, but if you go back to the music, you do,” he says.
The experience is incredibly important, but it’s prudent to also consider costs. While it’s not easy to compare expected costs in Dudley’s case, he says, “I have not been to a doctor since I’ve been in hospice. It’s got to be less expensive than me, an ignorant fool when it comes to medical care, running to the doctor every time I get a slight symptom.” A recent study published in the Journal of the American Medical Association’s Internal Medicine found reductions in costs with palliative care. Medicare also reports, “About a quarter of its patients who die each year do so in the hospital and many of them had been admitted to expensive intensive care units.”
Things have slowed down for Dudley. He “spends most of his energy just breathing” and “he’s not able to get out as much as he had, but he, his wife, daughter, daughter-in-law and granddaughter spent Christmas together.”
“I’ve gotten much more out of hospice than I ever anticipated I would get and I really would like to tell physicians and others they really need to start recommending hospice earlier,” he says. “If just a handful of people get to hospice a little earlier, that would be good.” (The Roanoke Times, 2/12, www.roanoke.com/news/local/blacksburg/hospice-gave-virginia-tech-professor-a-good-year-longer-to/article_53e1ac32-2f4e-5f1c-82ac-5060f274a87c.html)
CALLS FOR CLARITY IN DIFFERENTIATING PALLIATIVE CARE AND HOSPICE
Writing for Health Affairs, Anna Rahman pleads, “Let’s Not Muddle The Message About Home- And Community-Based Palliative Care.” New developments in the emerging field of home- and community-based palliative care (HCPC) show great potential, says Rahman, but also risks blurring the distinction between palliative care and end-of-life care.
“Anna Rahman, PhD, is a research associate professor at the University of Southern California Leonard Davis School of Gerontology. She also is a co-investigator of a comparative effectiveness evaluation of two home-based palliative care models funded by the Patient-Centered Outcomes Research Center.” Rahman fears linking palliative care and hospice. In the article, she shares her views.
Rahman makes the distinction between palliative care and end-of-life care by looking at the definition of palliative care from the Center to Advance Palliative Care (CAPC). Palliative care is specialized medical care for those living with serious illness. It focuses on providing relief from the symptoms with the goal of improving quality of life. That care is “provided by a team of palliative care doctors, nurses, social workers, and others who work together with a patient’s other doctors to provide an extra layer of support.”
Yet, Rahman says, “Trouble arises” in the statement that palliative care “is appropriate at any age and at any stage in a serious illness.” The phrase “at any stage” serves to highlight “the difference between palliative care and end-of-life care,” Rahman says.
In fact, she says it’s advisable not to even use the words “palliative care” and “hospice” in the same sentence. Even when the two are contrasted (for example, “palliative care is not hospice”) “may establish a link between the two terms in the mind of our listener.”
This fear of linking palliative and hospice care aren’t quibbles. Last year, Medi-Cal began requiring all provider to offer palliative care services to eligible patients. But that eligibility criteria are based on those used by Sharp HealthCare’s Transitions program, a “pre-hospice” service. So, patients learn of palliative care services within Sharp’s website’s “Hospice” section, where they’ll learn that, essentially, “the patient must be in the nearly last stage of his or her illness.
The confusion can also be seen from the expert advisory committee to the US Department of Health and Human Services (HHS) secretary, recommending two alternative payment models. One model, proposed by the Coalition to Transform Advanced Care, would require patients to have a high one-year mortality risk, making “HCPC programs sound more like pre-hospice than palliative care ‘at any stage.’”
“Consistently conflating palliative care and hospice care threatens to undermine our field’s credibility and our ability to help patients who could benefit from the extra layer of support palliative care provides,” Rahman writes. “It is not that many very sick patients near the end of life do not need HCPC. They do. But so, too, do many others: The chemo patient who is expected to survive his cancer, the transplant patient awaiting a new liver, the dementia patient whose caregiver is exhausted, we could go on.”
“Right now, HCPC could rightly be viewed as a type of hospice care. The danger with this view is that consumers will resist HCPC in the same way that they have resisted hospice care. We in our field have worked hard to distinguish palliative care from hospice care as a strategy for promoting access to this extra support. If we want HCPC to spread, we need to work even harder.”
In short, it’s time to “walk our talk,” says Rahman. A study published in Science recently re-emphasized that health care providers are poor prognosticators of death and that they “must focus on quality of care for very sick patients.” That means avoiding “using HCPC eligibility criteria that rest on some assumption about end of life (for example, ‘the surprise question’), “financially incentivize hospice transitions,” or recruiting and training “not just hospice agencies but also home health agencies and other community providers to deliver HCPC services.” (Health Affairs, 2/12, www.healthaffairs.org/do/10.1377/hblog20190206.338341/full/)
HOSPICE AND END-OF-LIFE NOTES
* AT&T and VITAS Healthcare have launched a virtual reality study for hospice patients. The study combines 5G with virtual reality and augmented reality to assess a “potential alternative therapy that is easier for caregivers to implement.” The first module of the study will focus on content and patient comfort level. “For example, to help calm an anxious patient they might take a virtual walk through a field along a tranquil stream or even journey to Machu Picchu in Peru.” The second module will focus on making that content mobile, something made particularly difficult due to large video files. Both downloading and streaming options will be investigated for support over mobile networks including 5G. (CISION, 2/12, www.prnewswire.com/news-releases/att-and-vitas-healthcare-launch-virtual-reality-study-for-hospice-patients-300793506.html)
* Iowa Public Radio talked with Kathy Butler, author of The Art of Dying Well: A Practical Guide to a Good End of Life. “Dying well is a process. It’s not an act,” Butler says. “The point I’m trying to make here is that this is not a process to start when you’re making a panicked call to 911 at the end of life.” During the talk, Butler speaks with host Ben Kieffer about medical overtreatment, end of life plans, and why it’s important to personalize spaces like hospital rooms. (Iowa Public Radio, 2/14, www.iowapublicradio.org/post/art-dying-well-practical-guide-good-end-life#stream/0)
* Writing in The Atlantic, Jon Mehlman explains an end-of-life decision: “My Wife Was Dying, and We Didn’t Tell Our Kids.” He describes the choice as “unusual, but loving,” arguing that he wanted them to stay children and not live with “the shadow of their mother’s mortality hanging over them.” Jon’s wife, Marla, had been given about 1,000 days to live after a breast cancer diagnosis. Eventually, Marla would survive over 3,500 days. He explains the logistics of slipping “the doctor into our house quietly in the evenings” for shots for Marla. When they knew her death was imminent, the family finally gathered and the children were given the news. The reaction from their children: “I am so glad I didn’t know what Mommy was going through,” one child told him. “I would have worried every single day.” (The Atlantic, 2/14, www.theatlantic.com/family/archive/2019/02/my-wife-and-i-didnt-tell-our-children-about-her-cancer/582709)
* The End-of-Life University published episode 181: “Why It’s Good to be Mortal and How to Celebrate it.” The episode begins a series titled “Mortal Wisdom,” exploring the “lessons we can learn from our mortality and how to thrive in life while knowing that death awaits us.” The episode includes discussion on the Buddhist concept of impermanence, the benefits of mortality, the concept of entropy, and rituals for getting comfortable with honoring our impermanence. (End-of-Life University, 2/13, https://us2.campaign-archive.com/?e=d0771da91c&u=3ca907a9f101567d342c3f4ef&id=7b1f44a0c3)
PALLIATIVE CARE NOTES
* “Palliative care experts say a telemedicine platform can help long-term care facilities and nursing homes improve care coordination and management for those dealing with life-limiting illnesses,” Eric Wicklund reports for mHealth Intelligence. “Care planning and care decisions are very personal and very relational,” says Dr. Christopher P. Comfort, the Medical Director of New York City’s Calvary Hospital. “But there really is not the manpower of palliative care specialists to provide those services face-to-face. There’s a wonderful opportunity here to … make this (process) better.” Comfort says there’s a particular need outside of the hospital setting. “It’s very difficult to move these services,” he says, and the risk for hospitalization is a real concern. In this setting, Comfort sees potential for telemedicine to monitor patients and provide individual care plans. (mHealth Intelligence, 2/11, https://mhealthintelligence.com/news/telemedicine-extends-palliative-care-to-the-outpatient-setting)
* The Journal of Palliative Medicine published “End-of-Life Care Planning: The Importance of Older Adults’ Marital Status and Gender.” The study set out to “examine marital status differences in EOL care planning by comparing the likelihood of discussions about EOL care, designation of medical durable power of attorney (MDPOA) for health care decisions, and completion of a living will for married, divorced, and widowed older adults, by gender.” Researchers found that divorced men and married women are particularly at risk for lacking EOL care planning. They encourage practitioners to discuss the importance of such planning as they encounter at-risk groups. The study uses data from the U.S. Health and Retirement Study, and “multivariate regressions were estimated to test differences in care planning across marital status groups, for men and women.” (Journal of Palliative Medicine, 2/4, https://www.liebertpub.com/doi/abs/10.1089/jpm.2018.0451)
* “Palliative care is a human right,” affirmed Monsignor Vincenzo Paglia, President of the Pontifical Academy for Life during comments opening the works of the Conference entitled “Muslim and Christian Perspectives on Palliative Care and the End of Life.” He went on to say, “Different international programs are implementing it, but the true human right is to continue to be recognized and welcomed as a member of society, being part of a community.” He characterized palliative care as a reaction to “throw-away culture,” a care that “embodies a vision of man of which their great religious traditions are the guardians and promoters: that is the most profound and incisive contribution that they can make in terms of motivation and inspiration.” (Zenit, 1/23, https://zenit.org/articles/palliative-care-is-a-human-right-says-pontifical-academy-for-life)
* The Journal of Palliative Medicine published “Emergency Department-Based Palliative Interventions: A Novel Approach to Palliative Care in the Emergency Department.” The study assesses the feasibility and reach of an ED-based palliative intervention (EPI) program, finding that such intervention “successfully screened for palliative needs in cancer patients and improved access to specific palliative services without increasing ED LOS.” Researchers studied 1,278 patients with advance cancer, 63.9% of which completed the 5-SPEED screen. “Of the patients who completed the screen, 422 patients (51.7%) had one or more unmet palliative care needs and 167 (39.6%) received an EPI. There were no differences in ED LOS or 10-day repeat ED visit rates between patients who did or did not receive an EPI.” (Journal of Palliative Medicine, 2/5, www.liebertpub.com/doi/abs/10.1089/jpm.2018.0341)
* In Maryland, a “Polarizing ‘End-of-Life’ Bill Returns in Legislature,” Bethesda Beat reports. The End-of-Life Option Act, sponsored by Democratic Senators Will Smith and Del. Shane Pendergrass, follows failed end-of-life reform efforts in the 2015, 2016, and 2017 legislative sessions. A 2018 Gallup poll found that euthanasia for terminally ill patients who are approved by a doctor polls at 72% nationally. “In Maryland, it polls at 65% percent.” Smith says he believes the bill stands a better chance this year because of an expanding coalition of support. Fifty delegates have signed on as co-sponsors in the House and 19 in the Senate. The article hears from supporters and detractors on the issue, concluding that it will be up to individual members to wrestle with the issue. (Bethesda Beat, 2/13, https://bethesdamagazine.com/bethesda-beat/politics/polarizing-end-of-life-bill-returns-in-legislature)
* Retired NPR talk show host Diane Rehm testified in favor of the assisted-death legislation that is being considered in Maryland. She told the story of her husband’s slow and agonizing death, which finally came after 10 days of not eating and drinking. The proposed legislation requires a “prescription from a doctor, and at least one of those must be made with the individual alone with his or her doctor.” (Star Tribune, 2/15, http://www.startribune.com/diane-rehm-testifies-for-assisted-death-bill-in-maryland/505903432/)
* Michigan Senator Debbie Stabenow (D) pitches “Medicare at 50,” an incremental approach to Medicare expansion. The plan is a revised version of a proposal she authored in previous sessions of Congress, but lowers the age of eligibility from 55 to 50. The proposal comes at a time where there is increasing support for universal health coverage. The Congressional Budget Office has scored buy-in plans starting at age 62, finding it would significantly lower premiums from $15,300 on the Obamacare markets to about $7,600. “The big dividing line is between Republican proposals that take away health care, and ours. We all want more affordable health care,” Stabenow says. “What we’re debating is, structurally, what do things look like long term, in terms of Medicare-for-all and how private insurance fits into all that. There’s a lot of debate and discussion that is ongoing.” (Vox, 2/13, www.vox.com/2019/2/13/18220704/medicare-buy-in-universal-coverage-stabenow)
* Four senior living providers in Colorado, New Jersey, Ohio, and Virginia are “teaming up for a big bet on Medicare Advantage.” “Through their Consortium, these four organizations will launch MA special needs plans on a state-by-state basis, and then sell ownership interest to senior living operators in each state, starting with Colorado and Ohio. The Consortium will own 51% of the MA plan in a given state, with each of the four organizations owning an even 25%. The owner-operators in that state’s plan will share ownership of the other 49%.” For the participating organizations, this is seen as an opportunity “to get upstream in the payment model,” as Laurence Gumina, CEO of Ohio Living puts it. Senior Housing News outlines the relative value that each of the providers brings. (Senior Housing News, 2/11, https://seniorhousingnews.com/2019/02/11/new-senior-living-consortium-to-launch-medicare-advantage-network)
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