Literature Review

[Switzerland] The use of artificial nutrition at the end-of-life: a cross-sectional survey exploring the beliefs and decision-making among physicians and nursesSupport Care Cancer; by Christophe Pala, Claudia Gamond, Steffen Eychmuller, Francois Herrmann, Sophie Pautex; 3/17/25 Background: The use of artificial nutrition in the last month of life raises many concerns for patients, relatives, and healthcare professionals. Conclusion: Whereas decisions on artificial nutrition at the end of life are common they may be mostly guided by physicians and nurses' beliefs, and patients' requests more than by robust evidence. Fostering palliative care education is pivotal. Our results emphasize the need to improve physicians and nurses' awareness of the complex interplay between values and evidence when decisions concerning artificial nutrition are taken.

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 ...]

[UK] Why we need to consider frailty in the assisted dying debateAge and Aging; Sarah A Hopkins, Annabel Price, Simon N Etkind; 2/25Assisted dying/assisted suicide (AD/AS) is legal or decriminalised in several countries and Bills to legalise it are currently being considered by the UK and Scottish Parliaments. Older adults living with frailty make up an increasing proportion of those who die, yet the possible implications of AD/AS for these individuals are relatively unexplored. Frailty complicates AD/AS in relation to eligibility because of ambiguity over whether frailty constitutes a terminal illness, challenges in accurately predicting prognosis, and difficulty determining reversibility of suffering. Frailty also blurs the distinction between terminal illness and disability, in contrast to the clear-cut language of current proposed legislation where those with a terminal illness are eligible, but those with disability are not. Further consideration is needed regarding eligibility, safeguards in the context of relational autonomy and for those who already feel a burden, and how to mitigate risks of further entrenching ableist and ageist attitudes.

Feasibility study of using electronic patient-reported outcomes to screen patients with advanced solid cancers for palliative care needsJournal of Palliative Medicine; Tara L Kaufmann, Matthew Kearney, Dagoberto Cortez, John W Saxton, Katie Goodfellow, Carolyn Smith, Patrick Chang, Katherine Sebastian, Aaron Galaznik, Julie Scott, Elizabeth Ann Kvale, Arif H Kamal, Antonia V Bennett, Angela M Stover, Ashley M Henneghan, Michael Pignone, Gabrielle Betty Rocque; 3/25Standardized, needs-based screening and triage systems are essential to more effectively address patients' palliative care needs. We developed a 13-item ePRO [electronic patient-reported outcomes] palliative care survey to assess multidimensional palliative care needs and conducted a pilot study (n = 25) of a palliative care screening intervention using ePRO monitoring and presentation of ePRO reports to a multidisciplinary care team. Patients found the ePRO palliative survey acceptable and appropriate. Screening patients for unmet palliative needs using ePRO monitoring is feasible, acceptable, and appropriate among patients, but more work is needed to understand the perspectives of diverse patients and how to integrate ePRO palliative care screening into clinical workflows.

Evaluating performance of the Surprise Question to predict 12-month mortality in patients with end-stage liver diseaseAmerican Journal of Hospice and Palliative Care; Sarah Homann, MD; Jamie Pfaff, MD; Elizabeth Stovicek, MD; Rajiv Agarwal, MD, MSC;, Sumathi K. Misra, MD, MPH; Jill M. Pulley, MBA; Justin K. Siemann, PhD; Ashley Spann, MD, MSCAI; Stacey Tillman, MD; Cheryl L. Gatto, PhD; Mohana Karlekar, MD; 2/25ESLD [end-stage liver disease] is associated with significant morbidity and mortality. Early PC engagement has been proposed as a solution to improve the physical and psychological burden associated with ESLD. ... hepatologists were asked the SQ [surprise question]: “Would you be surprised if this patient were to die in the next 12 months?” as a prompt to consider consultation to specialty PC [palliative care]. While the SQ should not be solely used as a prognostic indicator of death, our study proves that the SQ can be utilized by hepatologists as a screening tool with good sensitivity for identifying patients with ESLD who may be at higher risk of death and therefore may benefit from PC co-management.

Perceptions of patient-clinician communication among adults with and without serious illnessJAMA Network Open; Carine Davila, Sarah Nouri, Stephanie H Chan, Brian Feltz, Anna Gosline, Zamawa Arenas, Jane Kavanagh, Joanna Paladino, Lindsay A Dow, Vicki A Jackson, Rebecca Sudore, Christine S Ritchie, Elizabeth Lindenberger; 3/25In this cross-sectional study, adults with serious illness more often had worse patient-clinician communication experiences. Compared with adults without serious illness, adults with serious illness were more likely to report leaving a visit unsure about next steps ...; being afraid to ask questions or speak up ...; believing they were talked down to or made to feel inferior...; and believing that they were treated unfairly by clinicians ... Further research is needed to better understand and develop interventions to improve perceptions of patient-clinician communication experiences for adults with serious illness.

Nursing home residents, family members, and staff members views about a good death and preferred place of death for a nursing home residentOmega-Journal of Death and Dying; Janet Sopcheck, Ruth M. Tappen; 2/25Our study ... revealed that residents, like family members and staff members, had mixed opinions of the place of death for the NH resident, highlighting the importance of having advance care planning sessions with residents and their families to gain an understanding regarding their choices. Our study found the predominant and common qualities across the three participant groups of a good death include painless or pain-free, without suffering, peaceful, quiet, and dying in my sleep. Interestingly, almost one-fifth of the participants disagreed with the term good death, offering that death is not good as the person is no longer alive. Based on this study’s finding, using the term a good death in research and in advance care planning sessions may not be relevant or appropriate and instead focus on what care is necessary to promote a natural death, as mentioned by a few participants.

Disparities in end-of-life symptom burden linked to complex interplay among wealth, health, and social supportJAMA Network Open; Peter A. Boling, MD; 3/25On average, US health care spending in the last year of life alone was $80,000, with 12% ($9,500) being out of pocket and mostly incurred before the final 6 months. This problem worsened in the past decade when the nonspecific diagnosis of failure to thrive was removed as a condition eligible for hospice care and more stringent definitions were applied for dementia, which became the next bubble as the hospice balloon was squeezed. Hospice care is a means of reducing symptom burden, but the Medicare payment model discourages prolonged enrollment during slowly progressing advanced chronic illness and effectively limits funding of social support during hospice care, which is particularly problematic for patients with cognitive and functional impairment and for their friends and families. Considering suffering as a medical condition warranting treatment rather than a social problem requiring support services might help with the evolution of a Medicare policy that might provide a more graduated approach to end-of-life care.

[UK] Exploring the challenges experienced by patients and families using palliative and end-of-life care services: A qualitative focus group studyPalliative and Supportive Care; Gina Kallis, Gary Hodge, Hannah Wheat, Tomasina M Oh, Susie Pearce; 3/25In the UK, access to dignified and compassionate palliative care is increasingly being reported as inadequate. A range of challenges were identified at different stages of the patient and family carer journey near the end-of-life. These included issues related to the delivery of care, such as communication challenges, a lack of out of hours care, and also a lack of personalized care. Patients and families also experienced everyday challenges due to the impact of living with a life-shortening condition and altered family dynamics as family members became carers. There were also some traumatic experiences of death and a sense of abandonment when care could not be accessed. 

Researcher proposes new framework for language equity in health technologyJAMA; Yulin Hswen, ScD, MPH; Nora Collins; 2/25In a recent Editorial in JAMA Network Open, Pilar Ortega, MD, MGM, a clinical associate professor of medical education and emergency medicine at the University of Illinois College of Medicine in Chicago, and her coauthors emphasized the urgent need for integrating language equity into digital health solutions. “Technology may enhance health equity, but only if marginalized populations’ perspectives and root causes of health disparities are considered across key aspects of health care provision and at every stage of project development: design, evaluation, implementation, and revision,” they wrote. There are [more than] 350 languages spoken in the US. We need to do things that on a system level make it possible for individuals of any language preference to not only access care but that the health care quality they receive is comparable and equitable, so they can be enrolled in clinical trials [and] access all the different levels of care they might need. 

Psychedelics for cancer pain and associated psychological distress: A narrative review of a potential strategyCancer Medicine; Erika Belitzky, Lis Victoria Ravani Carvalho, Melissa Taylor, Cristina Naranjo Ortiz, Laura Baum, David A Fiellin, Maryam B Lustberg; 3/25Cancer pain can ... be exacerbated by anxiety, depression, quality of life challenges, and fear of death and dying, as well as by fear of recurrence or progression. Psychedelics, such as lysergic acid diethylamide (LSD), psilocybin, mescaline, and N,N-dimethyltryptamine (DMT), are under consideration as new pharmacologic strategies for mitigating pain and the distress associated with cancer pain and associated symptom burden. Although published studies are limited, regulatory hurdles have decreased. Many clinical trials are underway to assess further the use of psychedelics and behavioral counseling for patients with cancer and comorbidities such as anxiety or depression. Early results are promising, and additional research is needed to understand efficacy and tolerability in broader cancer populations. 

Wealth disparities in end-of-life symptom burden among older adultsJAMA Network Open; Irena Cenzer, Kenneth E Covinsky, Sarah H Cross, Claire K Ankuda, Lauren J Hunt, Melissa D Aldridge, Krista L Harrison; 3/25This cohort study found that lower wealth was associated with a higher symptom burden at the end of life, mediated in part by higher rates of multimorbidity, functional impairment, and dementia. These findings highlight the need for policies and programs to support patients with lower financial resources to improve end-of-life experiences and mitigate wealth disparities. 

Hospice use among Medicare beneficiaries with Parkinson Disease and Dementia with Lewy bodiesJAMA Network Open; Meredith Bock, MD; Siqi Gan, MPH; Melissa Aldridge, PhD; Krista L. Harrison, PhD; Kristine Yaffe, MD; Alexander K. Smith, MD; John Boscardin, PhD; Lauren J. Hunt, PhD; 3/25Lewy body disease (LBD)—an umbrella term that includes Parkinson disease (PD) and dementia with Lewy bodies (DLB)—describes progressive, incurable neurodegenerative disorders. Parkinson disease is the second most common neurodegenerative disorder after Alzheimer disease (AD) and is the fastest growing neurologic disorder in the world.In this cohort study of ... Medicare beneficiaries enrolled in hospice between 2010 and 2020, hospice enrollees with both PD and DLB were less likely to be disenrolled due to extended prognosis than those with AD. Enrollees with PD—but not DLB–were more likely to have longer lengths of stay and revoke hospice. The findings of this study suggest a higher likelihood of revocation of hospice care in PD, raise important questions about their unmet needs in hospice, and highlight the need to disaggregate dementia subtypes for policy analysis.