Literature Review

Coping and end-of-life decision-making in ALS: A qualitative interview study PLoS One, University of Auckland, New Zealand; by Olga Wenzel, Anke Erdmann, Gerald Neitzke, and Irene Hirschberg; 6/26/24 How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-life care? Which correlating conditions and influences relate to these needs and how do they connect to the wish to die or wish to live? ... We identified the coping strategies ‘avoid thinking about end-of-life’ and its counterpart, ‘planning ahead to be well-prepared,’ and differentiated the latter into the patterns ‘withdrawing from life and taking precautions against life-prolongation’ and ‘searching for a new meaning in life and preparing for life-sustaining treatment’.  ... These strategies may vary over time, resulting in different support needs. Our findings signify that deep insight is needed into PALS‘ coping processes to understand their decision-making about life-sustaining treatment. Healthcare professionals should be sensitive to illness experiences beyond medical aspects and foster coping as a biographical process to better support people with ALS.Editor's Note: Click on the title to access the full text of this insightful, relevant research. Hospice and palliative educators, use this to strengthen your disease-specific resources and training about care for persons with ALS.

Patient experiences of specialty palliative care in the perioperative period for cancer surgery Journal of Pain and Symptom Management; by Laura M Holdsworth, Rachel Siden, Anna Sophia Lessios, Mae Verano, Elizabeth Rickerson, Bridget Fahy, Fabian M Johnston, Brittany Waterman, Rebecca Aslakson; 6/19/24 online ahead of print  Context: Though patients undergoing treatment for upper gastrointestinal (GI) cancers frequently experience a range of sequelae and disease recurrence, patients often do not receive specialty palliative care soon after diagnosis and it is unknown in what ways they may benefit.  Results: We found five themes that characterized patient experiences and perceptions of specialty palliative care. Patients typically had limited prior awareness of palliative care (theme 1), but during the study, came to understand it as a "talking" intervention (theme 2). Patients whose concerns aligned with palliative care described it as being impactful on their care (theme 3). However, most patients expressed a focus on cure from their cancer and less perceived relevance for integration of palliative care (theme 4). Integrating specialist palliative care practitioners with surgical teams made it difficult for some patients to identify how palliative care practitioners differed from other members of their care team (theme 5).

Experiencing and enduring patient distress: the distress of palliative care patients and its emotional impact on physicians in trainingBMC Medical Education; by Andréa Tarot, Maxence Pithon, Ashley Ridley, Virginie Guastella, Virginie Guastella, Morgane Plancon, Régis Aubry, Helène Vaillant Roussel, and Axelle Maneval; 6/26/24The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing their natural distress. ... [The] aim of this study was to explore how professionals in training feel when confronted with the distress of patients undergoing palliative care. ... The interviews revealed the following five themes:

'We may not ever be fully staffed': Health system C-suites plan for the future Becker's Hospital Review - Leadership & Management; by Laura Dyrda; 6/24/24 After the pandemic, most healthcare leaders experienced a "great resignation" as workers left for other service industries and ever since health systems have been dealing with a lack of skilled labor to backfill the vacancies. "As we have realized we may not ever be fully staffed to the degree we were pre-COVID, we now must augment our existing workforce with technology that extends their capabilities," said Mark Moseley, MD, president of USF Tampa General Physicians and executive vice president of Tampa General Hospital. "This is a two-part challenge. First, we need to deploy technology thoughtfully with sound blocking and tackling, which is expensive in both time and capital. Second, we must train our workforce to use these new technologies to aid them in their daily responsibilities in a manner that does not diminish the ethos of why many of us went into healthcare: the interactions with patients and members of the healthcare team." Physicians and nurses can fall on a wide spectrum of excitement or distaste for incorporating technology into their practice. Some may find it impersonal and challenging to understand while others see it as a tool boosting their capacity. ... [Click on the title's link to continue reading.]

Advanced lung cancer: Studies explore palliative care delivered by telehealth and in a stepped-care approachThe ASCO Post - American Society of Clinical Oncology; by Alice Goodman; 6/25/24 Early palliative care can be integrated into the course of treatment for patients with advanced lung cancer via delivery by telehealth with outcomes similar to when palliative care is delivered via in-person visits, according to results of the REACH PC trial presented by Joseph Greer, PhD, of Harvard Medical School, Boston, at the 2024 ASCO Annual Meeting Plenary Session. A separate randomized noninferiority study presented at the ASCO meeting by Jennifer S. Temel, MD, FASCO, also of Harvard Medical School, Boston, found that stepped palliative care was noninferior to monthly visits with early integrated palliative care. Results of the stepped-care study were published in JAMA to coincide with the presentation at ASCO. [This article includes:]

Column: Hospice offers redirection of care The Andalusia Star News; by Vickie Wacaster; 6/22/24 Watching someone you love grow weaker and weaker with each passing day is challenging. Yet, sadly, many of us experience this. In my own life, when my late husband was diagnosed with a terminal, non-curable, yet treatable disease, I felt we were living on a roller coaster of emotions, appointments, and treatment options. ... Every day was a journey into uncharted territory for both of us. ... It was only during the last few days that we found the strength to say “no more treatments” and asked for hospice. ... Physicians recognize that hospice is not a withdrawal of care but a redirection of care to meet the needs of patients with an advanced terminal illness/disease. ...Editor's Note: The word "redirection" powerfully, easily shifts the course of care. The person remains at the center, with the focus being the person, not the disease. This is not a denial of dying and death, but rather a signpost, a gentle way to open the difficult conversation for providing information and asking "what matters most to you, now?" 

The 9 biggest challenges physicians face in daily practice: Survey Becker's Hospital Review; by Ashleigh Hollowell; 6/20/24 ... The following challenges are the ones physicians most often ranked as very or somewhat significant as they relate to their day-to-day work:

Interdisciplinary Pain Board for managing patients with palliative care needs and substance use disorder: A pilot study Journal of Palliative Medicine; Sarah Hauke Given, Patricia Reid Ponte, Kate Lally, Isaac S Chua; 6/20/24 online ahead of print Context: Patients with cancer-related pain and concurrent substance use disorder (SUD) present a unique set of challenges for palliative care clinicians. A structured forum for interdisciplinary collaboration is needed to effectively manage this complex population. Objectives: Describe the feasibility and acceptability of a palliative care Complex Pain Board (CPB), an interdisciplinary team meeting to provide concrete care recommendations for patients with cancer-related pain and concurrent SUD and/or psychosocial complexity. 

Top oncologists say everyone with advanced cancer needs early palliative care. Here are 6 things to know ABC News, New York; by Lindsey Ulin, MD; 6/20/24This year, the American Society of Clinical Oncology — the world’s leading oncology organization — recommended palliative care for everyone with advanced cancer at the time of diagnosis and while receiving treatment. ... By next year, 693,000 people in the United States will have advanced breast, prostate, lung, colorectal, bladder, or skin cancer. ... “What I’m really excited to see is that these guidelines are taking a step back and thinking about [palliative care] from the time of diagnosis,” Dr. Arif Kamal, chief patient officer for the American Cancer Society and an associate professor at Duke University specializing in oncology and palliative care, told ABC News. “It should particularly be used in areas to help people stay on treatment, such as in clinical trials or hematologic malignancies.” Here are six things to know about palliative care:

Cancer therapy at end of life may not boost survival Cure; by Brielle Benyon; 6/17/24 Patients with advanced solid cancers who received systemic therapy toward the end of life typically did not live any longer than patients who did not receive treatment, according to research published in JAMA Oncology. Because cancer treatments can damper quality of life, it is crucial that patients and their loved ones discuss goals of care and prognosis with their oncology team, two experts emphasized. “I think once we progress to advanced and metastatic cancer when cure is no longer feasible, it’s important to consider goals-of-care conversations,” said study author Maureen Canavan, associate research scientist at Yale School of Medicine.

Dying of heart failure: how do we improve the experience? The Medical Journal of Australia - MJA; by Dominica Zentner, Vithoosharan Sivanathan, Jennifer Philip and Natasha Smallwood; published online 6/17/24 ... Despite the improvements afforded by multiple pharmacological, surgical and interventional developments in heart failure, the goal of therapy remains delayed disease progression for many. Cognisant of this reality, recent heart failure guidelines all highlight the important role of palliative care. ... The MJA recently published an article regarding the imperative of reframing palliative care. ... We suggest that ...

Nurse’s union reacts to order that medical company pay $17M in bills Rhode Island News - Providence Now ABC 6; by Gino DeAngelis; 6/13/24 The United Nurses and Allied Professionals said it has been “sounding the alarm for years” about Prospect Medical Holdings’ lack of investment in both Our Lady of Fatima Hospital and Roger Williams Medical Center. The company was ordered to pay $17 million in overdue bills to vendors of both hospitals. UNAP said it represents 1,200 employees at both hospitals as well as at Prospect Home Health and Hospice. ... "This decision by Judge Stern further highlights the need for the next owner – whether it is Centurion Foundation or someone else – to invest their own capital into these important hospitals and healthcare facilities. We simply can not rely on saddling these hospitals with more and more debt as is being currently proposed." 

'I don't ever trust Epic to be correct': Nurses raise more AI concerns Becker's Health IT; by Giles Bruce; 6/14/24 Nurses continue to voice concerns about artificial intelligence and its integration into EHRs, saying the technology is ineffective and interferes with patient care. Nurses from health systems around the country spoke to National Nurses United, their largest labor union, for a June 5 story about issues with such programs as automated nurse handoffs, patient classification systems and sepsis alerts. Multiple nurses cited problems with EHR-based programs from Epic and Oracle Health that use algorithms to determine patient acuity and nurse staffing levels. "I don't ever trust Epic to be correct," Craig Cedotal, RN, a pediatric oncology nurse at Kaiser Permanente Oakland (Calif.) Medical Center, told the nurses' union. "It's never a reflection of what we need, but more a snapshot of what we've done." ... Hundreds of nurses protested AI at Kaiser Permanente San Francisco Medical Center in April.