Literature Review

Juniper House on National Historic Register K103, Portland, OR; 2/18/25 The Juniper House is among Oregon's latest entries in the National Register of Historic Places ... for its statewide significance as Oregon's first end-of-life care home dedicated exclusively to residents with HIV/AIDS [May 1987] and for its substantial impact on statewide healthcare and LGBTQ+ history. ... In addition to caring for residents, the work of Juniper House included advocacy and educational efforts that were crucial in shaping public opinion and responses to HIV/AIDS.

UC professor seeks to make death care more inclusive: Equal Deathcare offers resources for the LGBTQIA+ community University of Cincinnati News (UC News); by Kyle Shaner; 2/12/25Jennifer Wright-Berryman, PhD, an associate professor of social work in UC’s College of Allied Health Sciences, is one of the founders of Equal Deathcare, a web-based resource where LGBTQIA+ individuals can find inclusive and affirming end-of-life and death care (funerals, memorials and pre-planning). “Groups that are at risk or marginalized, such as sexual and gender minorities — groups that I’m particularly interested in outcomes for — those voices weren’t included in these conversations around death care, especially when we talk about transgender individuals whose bodies and identities are often maligned in society,” Wright-Berryman said. ...

It’s inoperable cancer. Should AI make call about what happens next? The Harvard Gazette - Harvard University; by Alvin Powell; 2/10/25AI is already being used in clinics to help analyze imaging data, such as X-rays and scans. But the recent arrival of sophisticated large-language AI models on the scene is forcing consideration of broadening the use of the technology into other areas of patient care. In this edited conversation with the Gazette, Rebecca Weintraub Brendel, director of Harvard Medical School’s Center for Bioethics, looks at end-of-life options and the importance of remembering that just because we can, doesn’t always mean we should. When we talk about artificial intelligence and end-of-life decision-making, what are the important questions at play? ...

Shameless star Justin Chatwin had a pivotal Law & Order role in a heartbreaking episode NBC; by Jill Sederstrom; 1/30/25 Attorney Nolan Price found himself at odds with his brother, played by Chatwin, as the siblings were forced to make a painful decision. ... Justin Chatwin — who rose to fame on the hit comedy-drama series Shameless — took on the role of Thomas Price, the brother of Executive Assistant District Attorney Nolan Price, in “The Hardest Thing" episode, which premiered on January 30, 2025. The siblings disagreed about how to handle their father’s failing health. ... The brothers had to decide whether they wanted to put in a feeding tube, which could prolong their dad’s life by a few months, or “manage his pain levels” to “make his passing as comfortable as possible," a doctor explained. 

How a St. Louisan helps her community navigate death by filling out advance directives NPR - St. Louis on the Air; by Jada Jones; 1/28/25 When Vivial Lopez’s grandmother was on life support, her family was faced with many difficult decisions. Her grandmother did not have an advance directive, so her family did not know her final wishes. The experience of navigating her grandmother’s end-of-life plan without any direction led Lopez to advocate for families to prepare advance directives - especially those in Black and brown communities. Approximately only on ein three adults complete an advance directive for end-of-life care. Lopez works with the Gateway End-of-Life Coalition to empower members of the St. Louis community to navigate death through quality end-of-life care.  Editor's note: Click here for AARP - Find Advance Directives Forms by State, also available in Spanish.

FTC releases second interim staff report on prescription drug middlemen: Report finds PBMs charge significant markups for cancer, HIV, and other critical specialty generic drugsFTC press release; by FTC staff; 1/14/25Staff’s latest report found that the ‘Big 3 PBMs’—Caremark Rx, LLC (CVS), Express Scripts, Inc. (ESI), and OptumRx, Inc. (OptumRx)—marked up numerous specialty generic drugs dispensed at their affiliated pharmacies by thousands of percent, and many others by hundreds of percent. Such significant markups allowed the Big 3 PBMs and their affiliated specialty pharmacies to generate more than $7.3 billion in revenue from dispensing drugs in excess of the drugs’ estimated acquisition costs from 2017-2022. The Big 3 PBMs netted such significant revenues all while patient, employer, and other health care plan sponsor payments for drugs steadily increased annually, according to the staff report. Key Findings include:

My husband almost died. When I asked his doctor for help, I was appalled by the insensitive response. HuffPost; by Carrie Severson; 1/13/25 ... The physician’s assistant came in and looked at Gavin [the author's husband]. As soon as she took her seat, I told her I wanted to schedule him for a feeding tube, expecting her complete understanding and compassion. Instead, she laughed. “I recommended a consult for a feeding tube last week, and you declined it,” she said sharply. “Now I have to start over from scratch and reach back out to the GI team to see how we can get him in.” My mouth dropped open. I stared at her, bewildered. “I wasn’t ready last week. I’m ready now,” Gavin mumbled, barely audible. “What did he say?” the physician’s assistant snarled. I very calmly repeated what Gavin said, my heart breaking for him and rage racing through my body. “Well, you certainly have made my job harder. And now I’ll have to see what I can do for you. You’ll hear from me about your next steps, and you better follow them. It might be too late because of your attitude,” she barked. I leaned in, looked at her straight on, meeting her nasty tone, and said, “No. Your attitude has made this harder. And it’s very much not appreciated right now. He’s in pain, and your job is to help us. In fact, you took an oath to do no harm, and what you’re doing in this room is harmful.” ...

St. Petersburg doctor coerced minors into producing child sex abuse material, feds sayTampa Bay Times; by Emily Wunderlich; 1/7/25 A St. Petersburg doctor who is the husband of the chief administrative officer of the Juvenile Welfare Board of Pinellas County is facing charges that he coerced minors into producing child sexual abuse material and even directed a girl to hang herself, federal prosecutors announced this week. ... Court records show Leedy was indicted on Oct. 24 and arrested Dec. 20. He is being held in federal custody in Atlanta. He is facing three counts of production of child sexual abuse material and two counts of coercing or enticing a minor to engage in sexual activity. If convicted on all counts, he faces up to life in federal prison.

Conscience at the end of lifeNursing Reports; Ralph Neil Baergen, James Skidmore; 12/24Caring for patients at the end of life can involve issues that are ethically and legally fraught: withholding or withdrawing artificial nutrition and hydration, pain control that could hasten death, aggressive treatment that is continued when it seems only to be prolonging suffering, patients who request medical assistance in dying, and so forth. Clinicians may find that their deeply held ethical principles conflict with law, institutional policy, or patients' choices. In these situations, they may consider either refusing to participate in procedures that they find morally abhorrent (conscientious refusal) or providing care that they believe to be ethically obligatory despite being contrary to law or policy (conscientious commitment). Healthcare providers who refuse to provide medical services should be expected to explain their reasons, make prompt referrals, and bear some of the resulting costs or burdens.

[London] The problem of value change: Should advance directives hold moral authority for persons living with dementia?Bioethics; by Anand Sergeant1; 12/24As the prevalence of dementia rises, it is increasingly important to determine how to best respect incapable individuals' autonomy during end‐of‐life decisions. Many philosophers advocate for the use of advance directives in these situations to allow capable individuals to outline preferences for their future incapable selves. In this paper, however, I consider whether advance directives lack moral authority in in-stances of dementia.

Muslim community-engaged research highlights Muslim Americans' end-of-life-healthcare gaps and needs WisconsinMuslimJournal.org; by Sandra Whitehead; 12/20/24 Few Muslim Americans use hospice care, despite its posited benefits. A multi-sectoral team of academicians and community leaders in southeastern Wisconsin decided to find out why. ... Muslims are one of the fastest-growing religious communities in the United States, numbering between 3 to 5 million, with projections it will double by 2050. “With an aging Muslim population, there is a growing need for specialized healthcare services like hospice and palliative care,” the team’s research explains. ... Through a qualitative descriptive study with a Muslim patient and 10 family caregivers, the research team identified their perceptions of hospice care, ethical concerns and experiences. Among their varied perceptions, many saw it as useful only in the last hours of life. Participants also had ethical concerns about the use of sedative medication and with cessation of feeding terminally ill patients. Some had concerns about how hospice care might lead to unnecessary interventions or even hasten death. ...  The team is developing an informational resource, Islamic Bioethical Considerations for the End of Life: A Guide for Muslim Americans, to help Muslims who struggle when thinking about death and dying. 

Rabbi emphasizes balancing tradition, innovation in culturally competent care Yeshiva University; by Dave DeFusco; 12/20/24 Rabbi Dr. Edward Reichman, professor in the Department of Emergency Medicine at Albert Einstein College of Medicine, underscored the importance of understanding various religious practices to provide culturally competent care in his presentation, “Are Pig Heart Transplants Kosher? Judaism and Modern Medicine in the 21st Century,” as part of an interprofessional practice seminar ...  Rabbi Reichman offered practical advice for healthcare professionals treating Jewish patients. Key considerations included: ...

HSPN Staffing Summit: Leveraging technology for person-centered care Hospice News; by Sophie Knoelke; 12/9/24 This article is sponsored by CareXM. This article is based on a virtual discussion with Kathleen Benton, President and CEO of Hospice Savannah. ... Dr. Benton has a master’s degree in medical ethics and a doctorate in public health. She has offered and reviewed many publications relevant to the topics of palliative care, ethics, hospice, and communication. [Dr. Benton:] I was schooled in clinical ethics and really mediating ethical dilemmas in health care. Looking at, is this in the best interest of the patient? Are we truly following the patient’s wishes? Many of the dilemmas, I would say a good 90%, occur at the end of life. ... [At] the root of [really trending] cases was one missing element. That element was the lacking area of communication. What do I mean by that? I believe that health care does the worst job of probably all other areas of communicating with folks. We have really taken what it is to be human out of what it is to treat a patient and a person. [Click on the title's link to continue reading this insightful discussion.]