Literature Review

Palliative care clinicians goals-of-care notes more extensive than other providers’ documentation Hospice News; by Jim Parker; 3/5/25 A team of researchers has developed a standardized goals-of-care note to document patient wishes in the electronic medical record. Many patients do not experience goals-of-care conversations in a timely manner. But even among those who have, their wishes can get lost if they are not documented. The standardized note created by a research team from the Regenstrief Institute, the Indiana University School of Medicine and Indiana University Health can help health care providers be aware of and access patients’ goals of care, according to lead investigator Dr. Alexia Torke. ... The research on the note was published in the American Journal of Medicine.

My mother and brother have terminal cancer. I'm worried I won't feel anything when they die. Business Insider; essay by Kimanzi Constable; 3/1/25 ... My brother was diagnosed with Cutaneous T-cell lymphoma (CTCL) three years ago, and my mother found out she had stage four lung cancer a year ago. I got a call earlier this year that the cancer was spreading, and I flew to spend time with them. I knew it would be hard seeing them battling late-stage cancer, but what I walked into was my brother in the Advanced Cancer Care Center, unable to move, and my mother wanting to hold an "end of life" planning meeting. It was worse than I anticipated. It was hard to see him not moving and the nurses having to help him do everything. My mother looked like she weighed 50 pounds ... I'm worried I won't feel anything when they pass away. ... I think it might be just another day when they pass away. I've been thinking — what does that say about me? Am I a bad person for not falling on the ground and losing it for over half of my family dying? Or is this nothingness an OK feeling due to the complicated relationship we've had most of my life? ... Editor's note: Leaders, welcome to the daily world of your clinicians, especially your social workers, chaplains, and grief counselors. Read this with openness to the normalcy of this author's conflicted relationships, emotions, thoughts, and empowered actions toward "not wanting to regret how I handled this opportunity to say goodbye more healthily."

The Alliance commends introduction of legislation to extend hospice telehealth flexibilities  National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 2/28/25 The National Alliance for Care at Home (the Alliance) is pleased to support the reintroduction of the Hospice Recertification Flexibility Act in the House of Representatives. This bipartisan legislation, H.R.1720, would extend telehealth flexibilities for hospice face-to-face (F2F) recertification. The F2F encounter is performed by a physician or nurse practitioner to evaluate the patient and collect clinical information used in determining continued eligibility for hospice. Introduced by Representatives Carol Miller (R-WV) and Jared Golden (D-ME), the bill would extend the F2F recertification flexibility for providers until December 31, 2027. Beginning January 1, 2026, the legislation also includes important guardrails to ensure appropriate use and requires the Centers for Medicare & Medicaid Services (CMS) to create a modifier to collect data on when the F2F encounter is conducted via telehealth. The Alliance, then through its legacy organizations, worked with lawmakers to ensure continued care transformation and access to care for high-quality providers. [Click on the title's link to continue reading.]

North Texas doctor helps parents facing infant loss deal with the unimaginableCBS News - Texas; by Andrea Lucia, Lexi Salazar, Katie Standing; 2/25/25[Background story for parents Yvette and Thoms Ngo upon dealing with the news that their in-utero baby girl Zoe was diagnosed with Trisomy 13, would likely miscarry, or die soon after birth. Dr. Terri Weinman, their neonatologist offered rich palliative care interventions and support.] "When we met Dr. Weinman and her team the first time, she would say things like, 'So, what are we going to do when Zoey is here,' which changed my mindset completely," Yvette Ngo said. ... For the first time, the Ngos began to consider what Zoey's life, short as it might be, could look like. "It made us more comfortable with the situation, I mean as comfortable as you can be," Thomas Ngo said. "She just gave us hope." Zoey was born on April 18, 2024. She met her parents, her siblings and her grandparents. She was baptized. "They made us little crafts and mementos for us to take home, like footprints, really ways to help cherish Zoey's life," Yvette Ngo said. "They took her heartbeat and recorded it for us. Little things that we wouldn't necessarily think of." Zoey even had a chance to go home. But after 36 hours of life, Zoey passed away in her father's arms. The perinatal palliative care Zoey received remains rare. But for families like the Ngos, it provides a small sense of control when it's needed most. "Being able to plan so much in advance and think about all the different scenarios and how we wanted it," Yvette Ngo said. " I think, looking back on our time with Zoey..." "We wouldn't have done anything differently," Thomas Ngo said. Editor's note: Pair this with "Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing students," posted 2/24/25.

Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study BMC Palliative Care - Part of Springer Nature, Open Acces; by Annica Lagerin, Christina Melin-Johansson, Bodil Holmberg, Tove Godskesen, Elin Hjorth, Lena Junehag, Carina Lundh Hagelin, Anneli Ozanne, Johan Sundelöf & Camilla Udo; 2/19/25... This study aimed to gain an in-depth understanding of healthcare professionals’ (HCPs) experiences of existential conversations with patients with PC needs and their next-of-kin by generating a theoretical model. ... To emphasize the importance of ethical competence for quality patient care, particularly in PC, a combination of care ethics, clinical proficiency, relational skills and effective communication is essential. ... The potential obstacles we identified that require attention include the need for managers ... to support HCPs by allowing time for reflection, developing new routines, and providing education focused on existential conversations in PC. However, the main contribution of this study is the description of the interdisciplinary strategies HCPs used to establish meaningful, existential conversations by maintaining presence, as this paved the way for trusting conversations with patients and next-of-kin. Editor's note: Pair this with today's article "Why being trustworthy is a leadership hack that drives success."

Hospice workers in Tampa experience what it feels like to live with dementiaFox 13 Tampa Bay, FL; by Kailey Tracy; 2/19/25 Keosha Simmons says her father, who died in 2018, was a hard worker and an amazing man. ... "He did live with dementia. It was an early onset of dementia. He ended up with cancer, and it was a later stage when we found out about it, and that's when he came under the care of Empath Health Suncoast Hospice," Simmons said. Simmons is now the Director of Empath’s Community Engagement team. On Wednesday, Simmons and her team did a different kind of training. It was a hands-on simulation to experience what someone with dementia feels. [From this article's "The Brief" Summary.]

Staffing shortages weighing on hospice executive’s minds in 2025 Hospice News; by Holly Vossel; 2/19/25 Hospice leaders have lost sleep over workforce pressures plaguing the industry for several years running, a trend that is not anticipated to abate anytime soon. Staffing challenges were cited as the leading concern among 35% of 112 hospice professionals who participated in this year’s Outlook Survey by Hospice News and Homecare Homebase. This represented an 18% decline compared to the 2023 survey results. ...

Innovations in serious illness care with Bree Owens Teleios Collaborative Network (TCN); podcast by Chris Comeaux; 2/19/25 In this episode of TCNtalks, host Chris Comeaux interviews Bree Owens, a licensed clinical social worker and co-founder of The Holding Group.  They discuss Bree’s journey in the healthcare field, particularly in Palliative Care. Bree shares insights on learning the importance of meaningful conversations with patients and their families about care options, which led her to the unique model of The Holding Group.  Her organization has created space, hence the name The Holding Group, for a patient-centered approach, helping patients and their families find the right care at the right place and at the right time.  Bree emphasizes the significance of informed consent and the role of social workers in facilitating these discussions to enhance patient outcomes and satisfaction.

New insights into older hearts  The New York Times; by Paula Span; 2/15/25 It turns out that the Isley Brothers, who sang that 1966 Motown hit “This Old Heart of Mine (Is Weak for You),” were onto something when they linked age to an aching and flagging heart. Heart disease, the nation’s leading cause of death and disability, has been diagnosed in about 6 percent of Americans ages 45 to 64, but in more than 18 percent of those over 65, according to the Centers for Disease Control and Prevention. ... [In] recent years, dramatic improvements in treatments for many kinds of cardiovascular conditions have helped reduce both heart attacks and cardiac deaths. ... That can complicate decision-making for heart patients in their 70s and beyond, however. Certain procedures or regimens may not markedly extend the lives of older patients or improve the quality of their remaining years, especially if they have already suffered heart attacks and are contending with other illnesses as well. “We don’t need to open an artery just because there’s an artery to be opened,” said Dr. Alexander, referring to inserting a stent. “We need to think of the whole person.” ...

People with depression develop long-term health conditions quicker than those without, study finds McKnights Home Care; by Kristen Fischer; 2/13/25 Adults who have experienced depression develop long-term physical conditions about 30% faster than those without depression, a new study finds. Authors of the report said depression needs to be viewed as a “whole body” condition, with treatment approaches that address mental and physical health. The report was published Thursday [2/13/25] in PLOS Medicine. Investigators evaluated the association between depression and the rate at which conditions accrued in midlife and older age.

How to live when you know you are dying Equity Atlas; 2/11/25 Living with the knowledge of impending death is an incredibly challenging and emotional experience. Whether facing a terminal illness or a life-threatening situation, the idea of living when you know you are dying can be overwhelming. However, it is possible to find peace, acceptance, and even joy in the midst of such difficult circumstances. In this article, we will explore how to navigate this journey with grace and courage. ... How does one navigate this difficult journey? We turned to professionals in the field for their insights on how to live when you know you are dying.

What we talk about, or not, when talking about death Enumclaw Courier-Herald; by Wire Service; 2/9/25 Death is a guarantee for everyone, so why do people shy away from talking about it and using words like death and dying? ... As a death doula and grief coach, Kathleen Putnam hopes that providing care to those who are grieving can help change the language surrounding death. ... Putnam explains that in present society, people want to avoid grief and pain. With medical advancements and industries and marketing systems focusing on keeping people alive, the rhetoric surrounding dying has become negative. Putnam also pointed out that instead of using phrases like “they died” or “they’re dying,” other phrases like “pass away” and “they went to sleep” have become popular when talking about a loss.