ARTICLE EXAMINES PHYSICIAN DIFFERENCES SURROUNDING PHYSICIAN-ASSISTED DEATH
Divisions over physician-assisted death were acknowledged in the second iteration of a report by the American Medical Association’s (AMA) Council on Ethical and Judicial Affairs (CEJA). The report paints a picture of physicians with “irreducible differences of opinion.” For some physicians, the duty of “doing no harm” is antithetical to assisting death in this way. For others, the AMA council wrote, to not “provide a prescription for lethal medication in response to a patient’s sincere request violates that same commitment and duty.” This split of opinion was explored by Mark Moran in his Psychiatric News article, “How Should Organized Medicine Respond to Physician-Assisted Death?”
The CEJA report argues that both physician stances fall within the Code of Medical Ethics, as currently written. “On the one hand, it asserts, ‘Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer,’ while on the other hand, it also preserves … the right of physicians to practice according to their conscience in states where PAS/PAD is legal.” It is no wonder that the medical community wrestles with the issue and debates the language used to describe it.
“This has been a long slog,” said Jim Sabin, MD, the chair of CEJA. “The debate has been civil, thoughtful, and respectful on a topic that, if not handled well, could split the association.” The common ground that keeps the peace, Moran writes, is the belief in the need for wider access to palliative care and greater communication between physicians and patients regarding options during the end-of-life. This belief is reflected in actions taken by hospitals. The Center to Advance Palliative Care reports that, between 2000 and 2016, the number of hospitals with palliative care programs tripled. Still, that availability is highly variable from region to region.
It’s the hope of both sides within the debate that, as Joseph Rotella, MD, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM), says, “No one should ever have to consider PAD because they cannot access palliative care.” This care can help relieve the immense stress of many issues like the “loss of sense of self, loss of control, fear of the future, and/or fear of being a burden upon others, as well as refractory physical and nonphysical symptoms.”
The barrier to this care, Rotella says, is that the current reimbursement under Medicare is insufficient. To address this, the AAHPM has proposed an alternative payment model for community-based palliative care that was recommended last year by the Physician-Focused Payment Model Technical Advisory Committee for limited-scale testing by the Centers for Medicare and Medicaid Services.
Beyond payment models, a larger movement towards “caring over curing” is promoted by those like Daniel Sulmasy, MD, PhD, senior research scholar at Georgetown University’s Kennedy Institute of Ethics. An opponent of PAS, Sulmasy frames physician-assisted death as “the wrong answer” to the right question— “How can medicine respond to people’s concerns about dying a technological death?” In this way, he hopes palliative care can find a solution to care within the debate. “He reminds physicians that the same Hippocrates who urged doctors to ‘do no harm’ also cautioned against physicians attempting to treat patients who are ‘overmastered by disease.’” (Psychiatric News, 1/25, https://psychnews.psychiatryonline.org/doi/10.1176/appi.pn.2019.1b23)
Researchers at Duke University are exploring the benefits and limitations of computer-based guides, commonly known as “decision aids.” The aids can help personalize end-of-life decisions. Eureka Alert reports on the findings, which were published in the Annals of Internal Medicine. The results of the randomized clinical trial suggest that such tools can help families feel less conflicted about care options. However, the tools are not found to ease emotional distress like depression, anxiety, or post-traumatic stress for those overseeing their loved one’s care.
“In some outpatient situations, decision aids can help people make better-quality decisions,” explains the study’s lead author Christopher E. Cox, MD, an ICU doctor at Duke. “Therefore, there has been a hope that decision aids could revolutionize complex and expensive hospital-based health care by improving communication with clinicians, shortening the length of the hospital stay and reducing symptoms of distress that are common among those who have to make serious decisions on behalf of a loved one.”
Clear benefits have been seen for non-critical patients making decisions like whether to have surgery or how best to screen for certain conditions. This research represents a step into understanding its role in critical care settings, Cox says.
The program itself takes about 30 minutes to complete. Interestingly, the researchers found that the program didn’t appear to change the decision-maker’s preference for aggressive medical care or palliative care. Similarly, there was no difference in outcomes between patients whose caregivers used the guide and those in a control group who didn’t use it.
The divide between the guide’s recommendations and the family’s choices surprised researchers. “Family caregivers answered questions about the patient’s values, then the guide made treatment recommendations based on that information. Yet more than half of the family caregivers disregarded the guide’s recommendations in favor of more aggressive treatment.” This suggest that families with loved ones on life support might need additional resources to weigh the risks, benefits, and costs associated with plans of care.
“We’re going to have to rethink this approach for acute care, which is where a majority of health care expenditures occur,” Cox argues. “The hospital is one of the hardest places to make these decisions, so perhaps we need an approach that adds more emotional support or a structured role for clinicians to play while family members complete the decision aid.” (Eureka Alert, 1/28, www.eurekalert.org/pub_releases/2019-01/dumc-dtf012319.php)
HOSPICE AND END-OF-LIFE NOTES
* Falls and fractures in the elderly are a big problem that often trigger the need for hospice care. Sarah Phillips, MD, the Medical Director of Hospice of the Panhandle, describes the layers of physical and psychological impacts of falls. “Patients often become fearful of falling again, which in turn results in restriction of activities, decreased mobility and function, and loss of independence. Overall, there can be a substantial negative impact to someone’s quality of life. With declining independence comes the need for caregivers, community resources, and subsequently, financial concerns.” Hospice’s interdisciplinary teams—including physicians, nurses, social workers, certified nursing assistants, chaplains, volunteers, nutritionists, and more—can provide “an additional level of support” in a variety of settings. An early referral can “result in better pain management, increased support and advocacy from multiple disciplines, family and caregiver support, instruction on living with physical limitations, and a focus on comfort and quality.” (The Journal, 1/28, www.journal-news.net/journal-news/why-falls-and-fractures-in-the-elderly-can-be-a/article_7ace68fb-571f-59ec-991d-9f011042ff82.html)
* Parents of children who died at St. Jude Children’s Research Hospital now counsel the hospital in end-of-life moments. Those like Lisa Trumbo, who lost her three-year-old son Trevor, are offering their support to others parents. The lines of communication and support can mean a lot, Commercial Appeal says, but they also serve as volunteers who educate the staff on how to best communicate with parents in such moments. They do so through a Quality of Life Steering Council. The number of involved parents has grown to 38. “Parents have gone from simply sharing their story and shaping a bit of what we’re doing into being true, absolute partners,” said Justin Baker, chief of the division of life and quality palliative care. “These parents help with strategic planning, they do all the briefings and they shape our exercises.” St. Jude also impacts the broader medical community through its own workshops and academic papers on the subject. (Commercial Appeal, 1/31, www.commercialappeal.com/story/news/2019/01/31/st-jude-program-has-bereaved-parents-counsel-memphis-hospital/2681988002)
* Hawai’i Public Radio aired “End of Life Care,” a thirty-minute segment from The Body Show program. “End of life care is one of the areas of medicine that is often left behind when talking about treating particular illnesses. Such as: heart failure, cancer, COPD, and more. But having that discussion is something we all should do, no matter how healthy and young we are,” the station writes. (Hawai’i Public Radio, 1/28, www.hawaiipublicradio.org/post/body-show-end-life-care)
* “Burden of Restricted Activity and Associated Symptoms and Problems in Late Life and at the End of Life” published in the Journal of American Geriatrics Society concludes, “Rates of restricted activity and associated symptoms and problems are substantially greater in the last 6 months of life than in the period before the last 6 months of life.” The prospective cohort study took place in Connecticut, with over 700 community‐living persons aged 70 and older. Rates of restricted activity were found to be “significantly higher in the last 6 months of life … most notably for shortness of breath (38.6 vs 21.8), weakness (37.3 vs 18.9), and confusion (31.2 vs 9.8).” The authors suggest pursuing “enhanced palliative care strategies … to diminish the burden of distressing symptoms and problems at the end of life.” (Journal of American Geriatrics Society, 2018; 66:2282–2288)
* It has been a year since President Trump signed the Right to Try Act into law, but STAT reports, “Patients still aren’t getting treatment.” The article profiles patients and family members with experiences that “underscore just how many questions remain: Did the law change anything, or did it just give patients false hope? Were the detractors who made such critiques right all along?” Alison Bateman-House, a bioethicist at New York University, says, “There’s probably going to be a little bit of churn as everyone tries to figure out what is happening. But I still maintain my conviction that in the long run this is not going to be a useful way to get patients access.” Yet some patients remain hopeful and others argue it’s too early to judge the law’s success. “There is a rush to conclusion here on the part of people who had opposed right to try,” says Naomi Lopez Bauman, director of health care policy at the Goldwater Institute. “I think you are going to see a lot more activity this first quarter, and it will, I think, accelerate from there.” (STAT, 1/29, www.statnews.com/2019/01/29/right-to-try-patients-still-arent-getting-treatment)
PALLIATIVE CARE NOTES
* Is palliative care “the next frontier” for advanced practice registered nurses (APRNs)? According to the California State University Institute for Palliative Care, they’re a perfect fit for meeting the challenge of working in complex situations and building close relationships. “APRNs working in palliative care find the work to be challenging, but also empowering,” they write. “Your role is multifaceted, often resulting in strong bonds with the family, reducing the burden on the individual and the family while offering support for unique physical, social and psychological needs.” Taking on the task would meet a growing need as the number of individuals suffering from chronic disease continues to rise. Further, it builds on current nursing roles. (The California State University Institute for Palliative Care, 1/2019, https://csupalliativecare.org/palliative-care-aprns)
* “Triggered Palliative Care for Late-Stage Dementia: A Pilot Randomized Trial” is published in the Journal of Pain Symptom Management. The study finds, “Specialty palliative care consultation for hospitalized patients with late-stage dementia is feasible and promising to improve decision-making and some treatment outcomes.” The pilot randomized controlled trial enrolled 62 dyads of persons with late-stage dementia and family decision-makers on admission to hospital. “Of 137 eligible dyads, 62 (45%) were enrolled. The intervention proved feasible, with protocol completion ranging from 77% (family two-week call) to 93% (initial consultation). Hospital and emergency department visits did not differ. Intervention patients had more palliative care domains addressed and were more likely to receive hospice (25% vs. 3%, P < 0.019). Intervention families were more likely to discuss prognosis (90% vs. 3%, P < 0.001) and goals of care (90% vs. 25%, P < 0.001) and to have a MOST at 60-day follow-up (79% vs. 30%, P < 0.001). More intervention families made decisions to avoid rehospitalization (13% vs. 0%, P = 0.033).” (Journal of Pain Symptom Management, 2019; 57(1):10-19)
* “Filling the Void: Hospital Palliative Care and Community Hospice: A Collaborative Approach to Providing Hospital Bereavement Support” is published in the Journal of Social Work in End-of-Life Palliative Care. The article describes the “bereavement team, including clinical professionals from the inpatient palliative care team and two community hospices, developed the University of Florida (UF) Health Bereavement Program.” Bereavement support is not offered in all hospital-based palliative care programs, and the authors discuss the importance of this innovative program. “The interprofessional team includes social workers, volunteers, chaplains, nurses, nurse practitioners, and physicians. The bereavement program incorporates grief support workshops, follow-up with participants, via postal mail at timed intervals, website access to grief resources, staff education, and an annual evening of remembrance program. Finally, interagency collaboration has extended the reach of bereavement services beyond UF Health into our community at large.” (Journal of Social Work in End-of-Life Palliative Care 2018; 14(2-3):153-161)
* A pilot study published online in the journal BMJ Supportive & Palliative Care says, “Hospital bereavement services that are led by senior doctors and nurses and the person responsible for quality and safety may help to curb patient complaints and legal action in the wake of a patient death.” The research reviewed the impact of the Medway Model, which affords a one-hour semi-structured meeting for the bereaved the day following a patient’s death. “Relatives are encouraged to describe their version of events, and to expect to get answers to their specific issues and concerns. Formal minutes are taken by the hospital’s surgical lead for quality and safety, and actions agreed.” Researchers found, “Most (83%) of these families had unanswered questions about the clinical care given to their relative, while more than three out of four (78%) had questions about the quality of care provided. Around one in 10 (12%) had questions about both.” They write, “Many other models [of bereavement care] appear to provide counselling or other psychological support, rather than specifically aim to reduce complaints, inquests and litigation through providing answers to questions or direct discussion about issues of governance.” (OnMedica, 1/22, www.onmedica.com/NewsArticle.aspx?id=84541142-f3d8-4edb-8b1f-3bc7f24133ec)
- * The Department of Health and Human Services (HHS) Pain Management Best Practices Inter-Agency Task Force has released a long-awaited draft report on best practices for managing acute and chronic pain. The report calls for individualized, patient-centered management. “This draft report offers a wide range of treatment modalities with a framework to allow for multidisciplinary, individualized patient-centered care,” said the task force’s chair, Vanila M. Singh, MD, MACM, the chief medical officer of the HHS Office of the Assistant Secretary for Health. Composed of 29 health care providers, the task force also includes discussions of drug shortages, medication use, restorative movement therapies, interventional procedures for acute and chronic pain, behavioral health, and more. (Pain Medicine News, 1/2, painmedicinenews.com/Policy-and-Management/Article/12-18/Long-Awaited-Federal-Task-Force-Report-Focused-on-Patient-Centered-Pain-Management/53721)
PHYSICIAN ASSISTED SUICIDE NOTES
* Advocates in Albany are calling on New York Legislators to “pass a bill allowing medical assisted suicide in the state – and to raise awareness to change public opinion on end of life options available to patients and their families.” Tim Quill is the Founding Director of the UR School of Palliative Care and supports the cause with the group Compassion & Choices. “I think we have a responsibility to develop as many options as we can for those tough cases,” he says. “For the patients and families who are going through it it’s extremely important that they be given as many choices and options as they can have.” Others like Diane Colman, President and CEO of the disability-rights organization Not Dead Yet, argues “These bills do not prevent mistakes, coercion or abuse and, therefore, endanger the lives of old, ill and disabled people.” (WXXI News, 2/1, http://www.wxxinews.org/post/advocates-albany-working-get-medical-aid-dying-act-passed-year)
- * New York doctors express support for medical aid-in-dying. The support for the New York medical aid-in-dying bill has strong support— 67-20%. The figures come from Compassion & Choices, conducted by WebMD/Medscape in what CISION calls “the first valid survey of New York State physicians on the issue.” The article shares support from: Dr. Robert Morrow, associate professor, Albert Einstein College of Medicine, representing the New York State Academy of Family Physicians (NYSAFP); Dr. Timothy Quill, Founding Director of the University of Rochester School of Medicine Palliative Care Program; Dr. Jay Federman, family physician and Medical Director, High Peaks Hospice; Senator Diane Savino (D-Staten Island); Assembly member Amy Paulin (D-Westchester); Assembly Health Committee Chair Richard N. Gottfried (D-Manhattan); Senate Health Committee Chair Gustavo Rivera (D-Bronx); David Leven, Executive Director Emeritus and Senior Consultant, End of Life Choices New York; Donna Lieberman, Executive Director, New York Civil Liberties Union; and George Eighmey, Board Chair, Death with Dignity National Center. Full results of the survey are available at the end of the article as a PDF. (CISION, 1/28, prnewswire.com/news-releases/ny-doctors-support-medical-aid-in-dying-56-26-percent-support-ny-medical-aid-in-dying-bill-67-20-percent-300785250.html)
- * In “The Challenge of Senior In-Home Caregiving,” S. News & World Report writes, “The work isn’t easy and the pay isn’t great” which leads to staffing shortages. Matt Perrin, co-founder of the independent online senior living facility review site Ro & Steve, shares that for both consumers and industry professionals, the challenge is to find stable and qualified caregivers. The outlook isn’t good, either. Sonya Hinds, chief administrative officer of Interim HealthCare, the oldest health care franchise company in the country, says that demographics are a major driver of the current pressures in the home health care industry. “There are 10,000 baby boomers who are turning 65 every day. We don’t have enough qualified and trained caregivers to take care of those 10,000 people who are quickly needing that in-home care. We’re not keeping up with the supply and demand.” The article focuses on solutions grounded in “training, recognition, and relationship-building.” (U.S. News & World Report, 1/30, https://health.usnews.com/health-care/patient-advice/articles/2019-01-30/the-challenge-of-senior-in-home-caregiving)
* The U.S. House Ways and Means Committee held its first hearing under the new Congress. The hearing focused on “preventive care, expanding subsidies, and regulating association health plans (AHPs).” The hearing was entitled “Protecting Americans with Pre-Existing Conditions,” but Medpage Today writes that much of the discussion centered around the “policies within the Affordable Care Act, Republican efforts to repeal it, and recent reforms that tweaked American healthcare.” Rep. John Larson (D-Conn.) said, “What we have here is an infrastructure problem. The disagreements are over how to pay for it.” Rep. David Schweikert (R-Ariz.) said, “All we are really debating here is who gets to pay. It’s time for radical rethinking: Are you [Democrats] willing to work with us to break down the barriers to have cost disruption?” Deep frustrations showed during the meeting, but chairman Richard Neal (D-Mass.) “ended the hearing with optimism: ‘Today I heard a lot of members on the other side of the aisle say they support [requiring coverage for] pre-existing conditions, and I welcome that and hope we can work together.’” (Medpage Today, 1/30, www.medpagetoday.com/publichealthpolicy/healthpolicy/77723)
* A power of attorney can be critical for ensuring the right healthcare for seniors, according to U.S. News & World Report. The article examines legal terms and documents that this demographic might face. These include living wills, advance directives, DNRs, physician orders for life-sustaining treatment, and health care proxies, among others. The article hears from Matt Perrin, co-founder of Ro & Steve, who has had to “navigate these legal waters in caring for his mother who’s currently in an assisted living facility.” Perrin says it was important to be direct and seek consensus with his mother rather than being prescriptive. “It’s just a tricky discussion, but you’re doing it hopefully at the right time and not when you’re in dire straits.” Throughout, the article emphasizes the importance of getting ahead of these issues and creating unified plans rather than responding to a crisis. (U.S. News & World Report, 1/25, https://health.usnews.com/health-care/patient-advice/articles/2019-01-25/why-power-of-attorney-can-be-key-for-senior-health-care)
- * “Shared decision-making can significantly lower the probability that patients will file lawsuits and complaints, according to a simulation study,” according to Medpage Today. The article cites a simulated study in the Annals of Emergency Medicine with 800 participants, finding that patients involved in shared decision-making were 80% less likely to seek legal counsel. “Although intent as reported on a survey does not always predict behavior,” the authors write, “our results suggest that the use of shared decision-making confers medicolegal protection in the event of an adverse outcome.” The study’s lead author Elizabeth Schoenfeld, MD, offers three primary barriers to shared decision-making: finding the time, feeling that treatment options are not equally advisable, and believing that patients don’t want to be involved in the decision-making process. (Medpage Today, 1/27, medpagetoday.com/practicemanagement/medicolegal/77642)
* Washington lawmakers are considering a bill legalizing human compositing, a “green end-of-life option.” Supporters like Hanna Floss say a return to soil “seems like a really natural way to go. If we can turn ourselves into soil actually and provide nutrients to plants, that’s a bigger win for me.” State Senator Jamie Pederson filed the bill that would add two new options for disposing of human remains: “recomposition” and “alkaline hydrolysis” — a process of using lye and heat to dissolve the remains. “The vast majority of people are excited to have more options,” Pederson said. “The biggest concerns I have heard comes from the Catholic Church which believes this is not a dignified way of treating human remains.” The bill now moves on for a Senate vote and public hearing in the House. (KOMO News, 1/31, https://komonews.com/news/local/washington-lawmakers-consider-bill-to-legalize-human-composting-green-end-of-life-options)
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