Yolonda Wilson, Assistant Professor of Philosophy at Howard University, drove ten hours to visit her ill father in a Florida hospital. When she arrived, she was asking a nurse about his whereabouts when she heard his screams coming from down the hall. “Never mind. I hear him,” she told the nurse. “I’ll follow the sounds.”


“That any patient would be left in so much pain that his screams could be heard down the hall was unacceptable to me,” Wilson writes in “Dying while black: Perpetual gaps exist in health care for African-Americans,” published in The Conversation. The essay relates her experience with her father’s care and death alongside the broader racialized health disparities in the United States.


“How we die matters,” Wilson writes, and “black patients generally receive worse pain management in primary care environments and emergency rooms. Even black children are not treated for their pain to the extent that white children are.” Some attribute this to the false belief that black people do not experience as much pain as whites—that they have “thicker skin”—and that this impacts pain assessments by physicians.


This treatment disparity continues as patients are dying, she says. Families want to make their loved ones comfortable, says the article, but “racialized gaps in pain management lead to a denial of humane comfort care that contributes to unnecessary suffering for black patients and their loved ones.”


Wilson cites a 2016 study in the Journal of Pain and Symptom Management that found physicians generally interact less—both verbally and nonverbally—with black patients who are dying than they do with similarly ill white patients. The level of comfort care is reduced, as well as the sense of humanity that comes from acts like eye contact and touch.


She ties this research to the experience of Barbara Dawson, a 57-year-old who was arrested at Calhoun Liberty Hospital in Tallahassee, Florida after refusing to leave without treatment. She had been discharged, but still complained of breathing difficulty. The staff had accused her of faking the symptoms, but Dawson collapsed before she could be placed into the police cruiser and died an hour later from an undetected blood clot in her lungs.


“Dawson may or may not have been at the end of life when she arrived at the hospital,” Wilson writes, but the “hospital staff allowed her condition to deteriorate by not taking her complaints seriously. She died only feet away from people who could have, at minimum, eased her process of dying.”


With her own father, says Wilson, “The thing I wanted most in the world was for him to be as comfortable as possible.” Sadly, she writes, “that this did not happen despite my best efforts still haunts me when I think about the end of my father’s life.” She calls on the U.S. health care system to improve care for all patients at the end of life and reminds readers, “This system still denies black patients the kinds of interventions that white patients often take for granted. This denial contributes to more painful, horrific deaths of black patients and compounds the grief of their loved ones.” (The Conversation, 2/5, http://theconversation.com/dying-while-black-perpetual-gaps-exist-in-health-care-for-african-americans-110657)




Patients with chronic illnesses often create spaces on the Internet to share disease information and build an alliance between those who are suffering. NEJM Catalyst recently published “Unmet Needs: Hearing the Challenges of Chronic Patients with Artificial Intelligence,” an article describing the findings of a partnership between Quid, a data and language analysis platform, and UCB, a global biopharmaceutical company. They worked together to “analyze these conversations at scale to uncover the collective unmet needs of chronic patients” by tapping into over 500,000 online comments posted over eight years.

The result was the identification of both both medical and emotional needs. “Interestingly,” the authors write, “the collective data shows that six of the top eight unmet needs are more long-term emotional concerns, with the top two both focusing on how to live with the disease (understanding medication side effects and impact on daily life, and coping with living with the condition).”

In analysis, some diseases have fared better than others regarding positive and negative understandings and comments. Among the posts veering towards the negative are those from members discussing Alzheimer’s, Crohn’s, and epilepsy. For Alzheimer’s patients and caregivers, there’s a rise in discussion of concerns over whether neuropsychological testing could objectively test and detect progression of the disease. The authors also noted issues with social interactions and explaining the course of the disease. Crohn’s patients noted concerns over access to expensive medications. Epilepsy patients discussed fears of coping with public seizures and the resulting social fallout.Anxiety and distrust among patients are common, and this increases with a gap in understanding symptoms, disease information, and adequate discussion of test results. “Solving these issues is not easy,” the authors write, “and much of this may be rooted in the demand-driven time constraints faced by most physicians. There needs to be awareness, though, that patients are actively calling for engagement by their physicians to help them understand how to live with their diseases better, through greater knowledge, communication, and emotional support.”

In hearing these concerns, it’s clear there’s both a need and an opportunity for helping patients live better lives with their diseases. “En masse, patients are asking more and more for all-encompassing treatment including both emotional and medical support,” the authors conclude. “Shared decision-making and patient decision aids are becoming increasingly important to the clinical care experience, and patients will only grow in how much they turn to social media and online resources to seek out those with similar conditions and experiences. It is time for all those in health care — patients, providers, advocates, and others — to respect the importance of both the emotional and the medical elements of the patient experience, and to work together with patients to ensure they can live the lives that they choose.” (NEJM Catalyst, 1/30, https://catalyst.nejm.org/unmet-needs-patient-forum-chronic-patients)




* The Journal of Palliative Medicine published a review of Cicely Saunders: A Life and Legacy by David Clark. Clark’s book tells the story of Cicely Saunders, “canonized in her own lifetime” as someone “widely recognized as transforming the care of the dying, changing the practice of medicine, and acting as the major catalyst for the hospice movement.” The review calls the book “an extraordinarily nuanced and thoroughly referenced” exploration of Saunders’ life and work. The book “gives the detailed context of the intertwining developments and concerns of many of the key players around the neglect of the dying and new ideas in pain control.” True, the review says, “Cicely could be unkind, and Clark makes clear that she did not always extend her real and deep empathy for the suffering of patients and those close to them…, to colleagues, and particularly those whom she saw as weak.” Still, Clark shows the “massive impact of her personal role in the development of hospice and palliative care” and explains “how who she was, warts and all, was connected to the achievement.” (Journal of Palliative Medicine. 22(2):234-35, February 2019)

* The Journal of Hospice & Palliative Nursing published “Young Adult Knowledge and Readiness to Engage in Advance Care Planning Behaviors (ACP),” a study seeking to identify college-age students’ characteristics, their knowledge of ACP, and their readiness to engage in ACP-related behaviors. The study looked at about 150 students from the University of Texas at Austin with ages ranging from 18-26. Although 98% of the students had no advance directive, 85% rated themselves as ‘pro’ ACP. Regarding ACP behaviors, at least 83% of participants had never considered completing a living will or health care proxy, but 33% and 45% of participants had talked with loved ones about being kept alive on machines or about quality of life, respectively.” The authors conclude, “Young adults should be made aware of their ability to dictate the care they want to receive in situations in which they are incapacitated, as well as advocate for their family members to engage in ACP. Discovering characteristics associated with readiness to engage in ACP can enable hospice and palliative care nurses to tailor discussions with young adults regarding ACP.” (Journal of Hospice & Palliative Nursing. 21(1):54-60, February 2019)

* The Journal of Palliative Medicine published “Surgeon Perspectives Regarding Death and Dying.” The article relates findings and considers their relationship with delayed referrals to palliative care. The survey respondents were current nonretired members of the American Society of Colon and Rectal Surgeons. The survey found, “Respondents consistently reported their personal preferences for end-of-life care. Four central themes emerged: (1) Pain and symptom management, (2) Clear decision making, (3) Avoidance of medical care, and (4) Completion. Surgeons also reflected on both good and bad experiences with patients and family members dying, and how these experiences impact practice.” Acknowledging the limitations of a small sample size—117 individuals completed all or part of the qualitative portion of the survey—the authors conclude that the study “may inform initiatives aimed at surgeons who may underuse or delay palliative care services. Future studies are needed to better understand how surgeon preferences may directly impact treatment recommendations for their patients.” (Journal of Palliative Medicine, 2/2019, www.liebertpub.com/doi/full/10.1089/jpm.2018.0197)

* The Journal of Palliative Medicine published a study examining the “Differences in Medicare Utilization and Expenditures in the Last Six Months of Life among Patients with and without Alzheimer’s Disease and Related Disorders (ADRD).” Researchers used 2013 Medicare Research Identifiable Files (5% sample), finding that “ADRD patients were overall less expensive than their non-ADRD peers through reduced use of high-cost services. Urban patients were more likely than rural patients to use hospice and other services among both the ADRD and non-ADRD groups. After controlling for age, gender, race, dual eligibility, residence, region, chronic conditions, and type of service utilization, ADRD beneficiaries cost Medicare 11% less than non-ADRD beneficiaries.” From these findings, they assert, “Future research should examine the informal caregiving costs of caring, which is a significant part of care for an ADRD patient, as the residential setting of the beneficiary highly influences costs.” (Journal of Palliative Medicine, 2/2019, liebertpub.com/doi/full/10.1089/jpm.2018.0147)

* The Herald-Tribune describes the “little-known option” of palliative care, which they say is “a choice besides life or death” during a dire illness. “Palliative care — which includes anything that will ease suffering, from pain management to emotional support — can even be a pivotal part of [the treatment of patients with serious illness].” The article hears from Joelle Vlahakis, medical director of palliative care for Sarasota Memorial Hospital. “When someone determines that they don’t want a certain kind of care, and they see that we’re not simply letting someone die, there are skills that can be applied at the end of life that are not automatic,” she says. “We can say to patients, ‘We’re going to take very good care of you.’ When people feel better, they do better; everyone understands that. And the fear subsides.” The priority of palliative care, the article emphasizes, is “sparing the patient unnecessary disruption and annoyance in the midst of a distressing time.” (Herald-Tribune, 2/4, heraldtribune.com/news/20190204/during-dire-illness-choice-besides-life-or-death)

* Hospitals that primarily serve minorities are less likely to provide end-of-life relief, UPI reports. The article is based on the findings of “Association of Care at Minority-Serving vs Non–Minority-Serving Hospitals With Use of Palliative Care Among Racial/Ethnic Minorities With Metastatic Cancer in the United States,” published in JAMA Network Open. The research found that 22% of white patients with metastatic cancer received palliative care, compared to 20% of black patients and 15.9% of Hispanic patients. “Our mission is to reduce inequity in health care, and the first step in doing so is to raise awareness of these disparities,” says Quoc-Dien Trinh, a physician at the CSPH at Brigham and Women’s Hospital. “These findings suggest that there are significant racial and ethnic disparities in receipt of palliative care for patients with metastatic cancer and that these disparities are largely accounted for by the site of a patient’s care. Strategies that focus on improving palliative care use at minority-serving hospitals may be an effective strategy to increase the receipt of palliative care for minorities.” (UPI, 2/1, www.upi.com/Health_News/2019/02/01/Minority-hospitals-less-likely-to-give-end-of-life-relief-study-says/3861549050726)





* Oregon’s end-of-life medical directive form will no longer include the option of having a feeding tube. Research demonstrates that feeding tubes can harm patients with dementia. That determination appeared January in the Journal of the American Geriatrics Society and recommended that patient preference for feeding tubes be excluded from POLST form. “We are seeing more confusion and conflict and having families think they are something that are an option, when they will not extend life,” says Dr. Susan Tolle with Oregon Health & Science University’s Center for Ethics In Health Care. The American Geriatrics Society also does not recommend feeding tubes for older adults with advanced dementia. (EurekAlert!, 1/31, www.eurekalert.org/pub_releases/2019-01/ohs-fts013119.php; OPB, 1/31, www.opb.org/news/article/oregon-end-of-life-medical-directive-feeding-tubes-option)


* Nashville Public Radio invited listeners to help report on care at the end of life. In a brief piece aired during Morning Edition, the station hears from Blake Farmer, who’s reporting on end-of-life care as part of a reporting fellowship on Health Care Performance, which is sponsored by the Association of Health Care Journalists and supported by the Commonwealth Fund. “Lots of for-profit companies [are] jumping into this sector,” he says of end-of-life care. “Private insurers have been exploring what you might think of as ‘pre-hospice’, it’s called palliative care, typically … this is meant to cut down on expensive treatments that might be experimental and help patients avoid so many trips to the emergency room.” He cites startup activity around this area and acknowledges how difficult it is to determine the value and ethics of company involvement. “There’s a lot of complexity here,” he says, asking patients, caregivers, and those in the medical industry to reach out via an online form as he continues his coverage. (Nashville Public Radio, 2/8, www.nashvillepublicradio.org/post/we-need-your-help-reporting-care-end-life#stream)


* NYU Langone Health launched the Respecting Choices Person-Centered Care Model in 2017. The end-of-life clinical decision support care initiative facilitates shared decision-making among patients, their families and the care team. “Understanding and documenting patients’ goals, values, and preferences helps ensure our care teams are always providing care that aligns with the patient’s wishes,” says medical director Dr. Jonathan Austrian. The model has improved Langone’s screening by 34% and care plan documentation by 71%. “In addition, NYU Langone created a machine learning model that predicts short-term mortality and alerts the patient’s attending of record and its supportive care team.” (Healthcare Finance, 2/4, www.healthcarefinancenews.com/news/nyu-langone-tackles-end-life-care-decision-making)




* Colorado’s NBC station 9News reports that prescriptions for end-of-life drugs in the state nearly doubled in 2018. The 125 prescriptions written in 2018 is up from the 72 written in 2017, and comes two years after voters approved a medical aid in dying law. “State law requires physicians to report when they write a prescription for the fatal drugs. It also requires pharmacists to report when they fill a prescription. The law does not require specific reporting on whether or not a patient decides to take the medication.” (9News, 2/5, www.9news.com/article/news/prescriptions-for-end-of-life-drugs-in-colorado-nearly-double-in-2018/73-783f2350-bced-447b-b7bc-ff99bbfb66b4)


* Amedisys Inc., one of the country’s largest independent home health has closed a $340 million acquisition of Compassionate Care Hospice. In doing so, Amedisys has become the third-largest hospice provider in the U.S. “With the Compassionate Care family, we have a presence now in 33 states as opposed to 22,” says Regarner Thompson, senior vice president of Amedisys’ hospice south region. “We get an opportunity to care for more than 11,000 patients instead of 7,500.” Compassionate Care Hospice generates around $188 million in annual revenues, according to Amedisys. The end-of-life care provider’s locations will generally be branded as “Compassionate Care Hospice, an Amedisys company.” (Home Health Care News, 2/4, https://homehealthcarenews.com/2019/02/amedisys-closes-340m-compassionate-care-hospice-deal-begins-integration)


* The American Telemedicine Association is offering its advice as the DEA faces a new deadline to implement telemedicine prescription regulations. Congress enacted the Ryan Haight Online Pharmacy Consumer Protection Act almost a decade ago. In part, the law restricted the ability of telemedicine providers to prescribe controlled substances through virtual visits. The law allowed for a “special registration” avenue to do just that, but the DEA has yet to issue the regulations necessary to implement that registration. American Telemedicine Association CEO Ann Mond Johnson praised the Congressional passage of the SUPPORT for Patients and Communities Act in October, which directed the DEA to provide such regulations within one year. Johnson’s association created a special workgroup that provided five recommendations: 1) Create a distinction between traditional and telemedicine providers; 2) Allow telemedicine registration for both sites and providers; 3) Create a public comment period between now and the October 2019 deadline; 4) Avoid placing any discipline-specific limitations on special registration; 5) Allow telemedicine providers to register for DEA registration numbers in multiple states at the same time. (Healthcare Analytics News, 1/31, www.hcanews.com/news/telemedicine-association-hopes-to-shape-dea-prescribing-regulations)


* Forbes published “Your iPhone Can Now Store Your Health Records: Why Should You Care?” The article is based on a recent study from The Journal of the American Medical Association (JAMA). Apple Health Records, available on iPhones, argues that the JAMA Viewpoint article may accelerate the adoption of Personal Health Records (PHR). After Apple offered availability to those records in early 2018, 130 health system partners including John Hopkins Medicine made the feature available to patients. “The Health Records app uses the widely accepted FHIR (Fast Healthcare Interoperability Resources) standard for transferring electronic medical records, therefore is it inter-operable with electronic health records available in most U.S. hospital systems.” Early consumer reaction is positive, but researchers at the University of California, San Diego viewed this reaction with “healthy skepticism,” Forbes points out. Researchers write, “As with many other new products and solutions, such enthusiasm is common from early adopters. The platform will need to prove that it is useful, sustainable, scalable, and improves health outcomes. The key questions are whether this personal health record will improve patient outcomes and lower costs while also increasing quality.” (Forbes, 1/31, www.forbes.com/sites/shourjyasanyal/2019/01/31/your-iphone-can-now-store-your-health-records-why-should-you-care/#7d84547b2004)


* The hospital lobby is ramping up its “Medicare for all” opposition, Healthcare Dive reports. The platform of opening Medicare coverage to those under 65 years of age has gained traction with Democrats, including presidential hopefuls. “Hospital lobbies are mounting a coordinated effort to dissuade legislators” from supporting the policy. They argue it would cut into profits and destabilize facilities. “Opposition from the hospital groups picked up in the latter half of 2018 as the mid-term elections heated up and the push is expected to continue up to 2020. In June, many joined forces in a campaign called the Partnership for America’s Health Care Future, a coalition that includes the American Medical Association, PhRMA, America’s Health Insurance Plans and the Federation of American Hospitals.” Documents acquired by The Intercept show the group aims to remove Medicare for all from the 2020 Democratic platform. (Healthcare Dive, 2/8, www.healthcaredive.com/news/hospital-lobby-ramps-up-medicare-for-all-opposition/547678)


* A new report from Harvard Business School, authored by Joseph B. Fuller and Manjari Raman, is titled The Caring Company: How Employers Can Cut Costs and Boost Productivity by Helping Employees Manage Caregiving Needs. The article argues, “Helping employees address their personal caregiving obligations is an approach employers almost entirely overlook as a mechanism for maximizing employee productivity and minimizing turnover.” The report broke into major outlets like Forbes and NPR station WBUR. WBUR published “Parents Of Newborns Aren’t The Only Caregivers Who Need Paid Family Leave” and argues for thinking about caregiving more broadly in our society and workplace. Forbes published “How Business Can Support Their Caregiving Employees” by Danielle Kost. Caregiving responsibilities are a “largely undetected threat” to “worker productivity, employee retention and, ultimately, competitive advantage,” she argues. Indeed, almost 75% of employees are providing care to a child, parent, or friend. For employers, it’s important to: 1) Understand their employees’ evolving caregiving needs. 2) Adopt a framework for balancing a career and life. 3) Identify the hidden costs of caregiving. 5) Increase caregivers’ productivity at work. (Forbes, 2/7, www.forbes.com/sites/hbsworkingknowledge/2019/02/07/how-businesses-can-support-their-caregiving-employees; WBUR, 2/7, www.wbur.org/cognoscenti/2019/02/07/paid-leave-sotu-liz-odonnell)


* An aging population could cut the U.S. 2096 output by 39%, according to some economists. Think Advisor discusses findings of a new working paper from the National Bureau of Economic Research, written by Finn Kydland, economics professor at the University of California, Santa Barbara, and Nick Pretnar, a Ph.D. student in economics at Carnegie Mellon’s Tepper School of Business. They project that caregiving and the reduction in the percentage of the population in the workforce, will “lower the nation’s economic output 17% by 2056 — and 39% by 2096 assuming a constant population distribution.” (Think Advisor, 2/6, www.thinkadvisor.com/2019/02/06/aging-population-is-an-economic-double-whammy/?slreturn=20190108233945)


* California’s Death Certificate Project—designed to find physicians with egregious patterns of overprescribing dangerous drugs— “has prompted outrage from many physician groups,” including the American Medical Association. At a recent board meeting, Kimberly Kirchmeyer, the Medical Board of California’s executive director, said the project can be improved to “eliminate some of the concerns that have been raised.” For instance, the board staff and its reviewers will review more recent cases from 2016 and 2017, a time after state and federal guidelines urged more cautious prescribing. Also, “instead of looking just at the physician’s prescription history for each deceased patient with a death certificate, the board will expand its review to the physician’s prescribing practices for other patients ‘at that stage, and will look for red flags for potential inappropriate prescribing patterns.’” The board will also assemble a task force to recommend updates to prescribing guidelines, similar to the process they used in 2014. Still, those like Phillip Coffin, MD, director of substance use research at the San Francisco Department of Public Health, “urged the board to stop the project,” pointing to a CDC study that found patients who were discontinued from opioids were 2.5 times more likely to turn to illegal sources. The project is “unintentionally harming patients,” he said. David Kan, MD, president of the California Society of Addiction Medicine, also urged a “halt [to] the current investigative process” to address the outcomes of those abruptly cut off from painkillers. Kirchmeyer says continued education about prescription guidelines may help confusion about “red flags” under review and ease anxiety. (Medpage, 2/4, www.medpagetoday.com/painmanagement/opioids/77811)


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