Literature Review

Assisted ventilation withdrawal in motor neuron disease: updated results BMJ Supportive & Palliative Care; by Lucy Bleazard, Jonathan Palmer, David Wenzel, Thomas Jeffery, and Christina Faull; 3/24/25 Introduction: Patients with ventilator-dependent motor neuron disease (MND) may request withdrawal of their assisted ventilation. Facilitating this process as a healthcare professional (HCP) can be emotionally and practically challenging. The Association for Palliative Medicine (APM) issued guidance to support HCPs and invited anonymised accounts of the withdrawal process to provide an update on the guidance. ... Results: Younger patients tended to need higher doses to achieve adequate symptom management prior to withdrawal. Practices of weaning the ventilator varied significantly between respondents. The median time to death following withdrawal of ventilation was 30 min, with three-quarters of patients dying within 2 hours. Conclusion: This is the largest data set to date regarding the withdrawal of assisted ventilation in MND. This updated analysis reaffirms that a personalised, titrated approach remains appropriate and effective. The revised APM Guidance 2025 incorporates new sections on recommendations for managing the ventilator. [Continue reading ...]

Carolyn Hax: Does sibling love justify traveling to abusive mom’s deathbed?The Washington Post, Washington, DC; 3/24/25 Sister asks the letter writer to join her at their dying mom’s bedside — despite their PTSD-inducing childhoods. [The rest of this article may require a subscription to The Washington Post.]Editor's note: Even if you're not able to access the full article, what does this question stir in you? Be aware that many family caregivers (or simply family members) face complex, conflicted relationships with the persons they are tending--or in this case, even considering visiting or not. Be attuned to these common, everyday occurrences that your direct care interdisciplinary team members regularly navigate. What family systems' education and support do you provide for them?

Health care system adaptation and resilience during the wildfire crisisJAMA Network; by Attila J. Hertelendy, PhD, Jeremy Maggin, MD, MS, and Gregory Ciottone, MD; 3/19/25 ... Within a span of hours, the Palisades and Eaton fires, propelled by record-breaking Santa Ana winds reaching 150 miles per hour, consumed more than 37,000 acres, destroyed more than 16,000 structures, and claimed 29 lives. All told, greater than 186,000 residents were placed under evacuation orders. ... The experience in Los Angeles County demonstrates the value of maintaining dual-purpose resources: facilities and personnel who can transition between routine operations and emergency response functions. This approach is exemplified by Kaiser Permanente’s successful deployment of mobile health vehicles and the use of clinically trained administrative leaders in direct patient care roles during crisis events. Key elements of successful resource mobilization include:

From heroes to burnout: How we failed our frontline health workers MedPage Today's KevinMD.com, and excerpt from Health Care Nation; by Tom Lawry; 3/15/25 Of all the lessons learned from fighting a pandemic, none was more frightening or important than discovering how dependent the system is on how we treat our doctors, nurses, and frontline caregivers.  They were already in short supply, with burnout on the rise, when the pandemic hit. As multiple waves of COVID-19 variants washed over us, frontline health workers stepped in at great risk and personal sacrifice to care for highly infectious patients. ... Some witnessed more deaths on a double shift than they did in a normal year. They delivered the bad news to families and managed end-of-life care. They were often the last face and warm voice a COVID-19 victim saw and heard. In the end, they not only saved lives but saved the system from total collapse. ... We called them heroes. And we promised to do better in how we treated them once the COVID-19 crisis passed. Promises made should be promises kept. While we continue to talk about workforce burnout using polite terms with concern in our voices, let us be clear: A system with a mission of healing continues to harm in record numbers the very people in short supply who are there to take care of the rest of us. ... [Click on the title's link for more.]

How work in the hospice field differs from hospital work Healthcare Business Today; 3/17/25 ... How work in the hospice field differs from hospital work goes beyond the obvious difference in care settings—it reflects a fundamental shift in approach, focus, and philosophy. Hospice focuses on enhancing quality of life, while hospitals often prioritize life-saving interventions. This contrast not only shapes patient care but also defines the role of the medical teams in these environments.

Spiritual well being at Kaiser HMG - Hews Media Group, Los Cerritos Community News, Los Angeles, CA; 3/13/25 At Kaiser Permanente Downey Medical Center, the hospital and staff are committed not only caring for the patient’s physical, emotional and mental wellness, but just as importantly to their spiritual well-being. ... Chaplains at Downey Medical Center are called upon when a patient and/or family is:

Palliative care nurse specialists' perspectives on spiritual care at end of life-A scoping reviewJournal of Hospice and Palliative Nursing; Bronagh Dunning, Michael Connolly, Fiona Timmins; 3/25The research demonstrates that specialist palliative care nurses perceive spiritual care as an important element of holistic care at end of life; however, these nurses also agree that spiritual care is lacking. This deficiency results from a lack of education in spirituality; experience of the nurse; the nurses' own spiritual and religious beliefs and values, fears, and difficulties in communication; and the nurse-patient relationship. The findings demonstrate the necessity to increase the level of spiritual care education in nurse programs, educating nurses on the provision of spiritual care, and how to deal with conflicts in spiritual and religious beliefs.

Tumor: why not use the warrior’s metaphor anymore taketonews; 3/7/25 ... The term "warrior" is often used to describe cancer sick people, referring to their strength, determination and ability to fight the disease. Although the intention is positive, docts and psychologists believe that this metaphor can generate negative effects on people with an oncological disease. The "warrior" label is not always appropriate and can have unwanted psychological effect on cancer patients. ... Use a language that does not reduce the patient to his struggle, but that enhances his entirety, including weakness, depression and pain, can contribute to a more human and respectful experience of care. ... [Click on the title's link for this further information below.]

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."

Influence of culture and spiritual tradition on support for families of children dying in intensive care unitsJournal of Pediatric Nursing; Sung-Jin Jeanie Ju, Janie Ito, Aubree Lin, Dagmar Grefe, Jennifer Baird, Rebecca Ortiz La Banca Barber; 2/25Parents utilize spirituality as a means of coping during and after a child's death. Complexity of grief associated with loss of a child suggests the paramount importance of providing appropriate support for parents while experiencing their child's critical illness or end of life. Findings indicated three themes that illustrate the end-of-life and bereavement process: 1) Coping during hospitalization and the end-of-life stage; 2) coping during the bereavement stage; and 3) advice for parents and staff. To integrate the results into practice, hospital-wide education for staff on the importance of cultural and spiritual sensitivity is recommended. Additionally, collaboration with spiritual care teams, especially for patients and families facing complex diagnoses or advance care planning, will enhance the provision of culturally and spiritually sensitive care.

‘Global problem’: Numerous factors, biases contribute to overtreatment at end of life Healio; by Josh Friedman; 2/26/25 Nathan I. Cherny, MD, has worked all around the world. At every stop — from Australia to Israel, and Memorial Sloan Kettering Cancer Center in between — he has seen people with cancer receive overly aggressive treatment at the end of life. ... In a review published in ESMO Open, Cherny and a cohort of multinational colleagues highlighted numerous reasons why overtreatment occurs among patients approaching the end of life, ... They listed more than 20 contributing factors, including desire for control of the cancer, denial and anger, family pressure and hope preservation. The two factors that contribute most to overtreatment are optimism bias and the “counterphobic determination to treat,” which involves clinicians having a difficult time introducing the suggestion of palliative care revert to offering further treatments, Cherny said. ... Responsibility for decisions does not need to fall solely on oncologists, Cherny added. Palliative care physicians, social workers, chaplains and others can be part of a team to assist patients with their choices. ... The number of patients who are overtreated differs at each institution. “Each institution has its own culture of care,” Cherny said. Editor's note: This article puts forth significant insights for all palliative and hospice clinicians, interdisciplinary teams, and palliative/hospice executive leaders. Apply Cherny's to your referral sources: "Each institution has its own culture of care." Apply these findings to your own palliative and hospice services. 

Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing studentsState Nurses Associations - Kansas State Nurses Association; by Shelby True, MSN, RN; Libby Rosen, PhD, RN, IBCLC; Ashley Seematter MSN, RN; Jeri Harvey & Karly Lauer, MSN, RN; 2/20/25Many baccalaureate nursing programs throughout the United States thread concepts of bereavement and end-of-life care throughout their curriculum. However, a standardized education program for nursing students that increases the knowledge, confidence level, and application of skills a nurse must possess when providing perinatal bereavement care is often absent from the curriculum (Sorce & Chamberlain, 2019).  Perinatal loss can have a profound impact on parents and their loved ones, leading to emotional, psychological, physical, and spiritual trauma that deeply affects the lives of those involved. The nursing care each parent receives at the time of the loss may be remembered for years to come and is crucial to determining the nature of the grieving process (Sorce & Chamberlain, 2019). ... To improve the knowledge, confidence, and skill level of nurses providing perinatal bereavement care, a role-play perinatal bereavement simulation was developed and implemented in two Midwestern universities’ baccalaureate nursing programs in the maternal/newborn courses. Editor's note: Having served our hospice's Pediatrics Team for four years, the grief of parents, grandparents, siblings affected me deeply. I remember vividly a young mom unable to physically leave her baby's body with the hospital's nurse. Gently, we held her baby together. Over the course of about 15 minutes, the mother gradually shifted the weight of holding her baby over to me, before the hardest task of her life--leaving the hospital without her child. (It was Christmas week. I bawled when I got home.) Visiting them at the funeral home and after in their home, I experienced horrible, disenfranchised comments and attitudes from others (especially a local preacher). Leaders: tune into your pediatric hospice and palliative team members. What specialized support and education do they need? And, we never know what personal stories of perinatal bereavement those around us continue to carry.