Literature Review

"I often just don't know what to say!": Variations in multidisciplinary palliative care clinicians' confidence and needs related to spiritual care American Journal of Hospice & Palliative Care; by Megan Miller, William E Rosa, Haley Buller, Meghan McDarby, Betty R Ferrell; 7/22/24 online ahead of print Spiritual care is a core component of high-quality palliative care, yet gaps exist in spiritual care provision. ... Findings reveal varied levels of confidence with spiritual care across dimensions. Chaplains reported the highest levels of confidence compared with nurses and social workers. Key areas of knowledge/skills to improve spiritual care provision were: (1) Training and support for clinicians in spiritual care; (2) Strategies for providing spiritual care to patients from diverse cultural and/or religious backgrounds; (3) Better understanding of specific populations and contexts that may affect spiritual care provision; and (4) Clinicians' personal growth & practices to improve spiritual care.

Being present is one way to help dying friendAsk the Doctors; by Elizabeth Ko, MD and Eve Glazier, MD; 7/5/24Dear Doctors: My friend was diagnosed with multiple myeloma 10 years ago. His chemo is no longer working, and his doctors say there’s nothing else to be done. He has accepted whatever is coming. He has lost weight, and sometimes the pain is bad. How can I help him?Dear Reader: No matter how long someone has been dealing with a serious illness, the cessation of active treatment can be devastating. This is true not only for the person approaching the end of their life, but also for family and friends. The response to this transition often includes a rotating mix of grief, sorrow, fear, anxiety, dread and anger. However, people also often feel acceptance, peace, hope and even relief. Again, these are experienced not only by the individual who is ill, but also by the people around them. When spending time with someone with a terminal illness, you are looking for balance. That is, you want to be supportive and helpful, but not overwhelm them with your attentions. Hospice care professionals say this can be achieved by asking the person what they need. ... Always check with the person before starting a new task or a project. This keeps them in control of the events around them, which bolsters mental and emotional well-being. [Italics and bold are from this newsletter's editor.]Editor's Note: Calling all hospice and palliative leaders, in the midst of carrying out our professional roles most of us experience the dying and deaths of family, friends, and acquaintances. This article gives meaningful, practical ways to both be present and do simple things that can empower and support the person who is dying. We invite you to pair this article with our newsletter's "Today's Encouragement: We are human beings ..."

Clinician- and patient-directed communication strategies for patients with cancer at high mortality risk JAMA Network Open - Oncology; by Samuel U. Takvorian, MD, MSHP; Peter Gabriel, MD, MSE; E. Paul Wileyto, PhD; Daniel Blumenthal, BA; Sharon Tejada, MS; Alicia B. W. Clifton, MDP; David A. Asch, MD, MBA; Alison M. Buttenheim, PhD, MBA; Katharine A. Rendle, PhD, MSW, MPH; Rachel C. Shelton, ScD, MPH; Krisda H. Chaiyachati, MD, MPH, MSHP; Oluwadamilola M. Fayanju, MD, MA, MPHS; Susan Ware, BS; Lynn M. Schuchter, MD; Pallavi Kumar, MD, MPH; Tasnim Salam, MBE, MPH; Adina Lieberman, MPH; Daniel Ragusano, MPH; Anna-Marika Bauer, MRA; Callie A. Scott, MSc; Lawrence N. Shulman, MD; Robert Schnoll, PhD; Rinad S. Beidas, PhD; Justin E. Bekelman, MD; Ravi B. Parikh, MD, MPP; 7/1/24 Serious illness conversations (SICs) that elicit patients’ values, goals, and care preferences reduce anxiety and depression and improve quality of life, but occur infrequently for patients with cancer. Behavioral economic implementation strategies (nudges) directed at clinicians and/or patients may increase SIC completion. ... In this cluster randomized trial, nudges combining clinician peer comparisons with patient priming questionnaires were associated with a marginal increase in documented SICs compared with an active control. Combining clinician- and patient-directed nudges may help to promote SICs in routine cancer care.

Palliative care nurses see us in our final hours — these are the life lessons they've learnt ABC News; by Iskhandar Razak; 6/29/24 Anne Myers was once confused and shaken by death. After more than a decade as a nurse, including in hospital ICUs, her mother died. "I'd seen a lot of deaths in my nursing life, but it was the closest human to me that had died," she said. "It kind of sent me down a 'oh my god, I don't know what's happening to me', this grief I'm experiencing." Soon afterwards, she became a palliative care nurse. "I ended up just going down the path of 'what is death, what is death and dying all about?'" she recalled. More than 15 years later, here's what she and other palliative care nurses have discovered on how to die well and live well.

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.

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:

Palliative care physician: ‘Healing is possible’ even when cure is not Healio, Chicago, IL; by Jennifer Byrne; 6/26/24During her fellowship as a palliative care physician, Sunita Puri, MD, met a patient who taught her that healing is possible even when cure is not. Alice, a 35-year-old woman, had acute myeloid leukemia. ... Nobody wanted to say it out loud, but Alice was dying. “She was only a couple years older than me. She’d lived in San Francisco, a few streets away from where I lived in my residency,” Puri, program director of the hospice and palliative medicine fellowship program at UMass Chan School of Medicine. ... “She had a vibrancy that I had always hoped to embody, but she was intubated, wide awake, on dialysis and starting to suffer from ascending paralysis.” ... During rounds one day, Puri told her attending that she was at a loss about how to help Alice and didn’t feel she was doing anything meaningful for her. “My attending said, ‘What if just being at her bedside is achieving something meaningful?’” Puri recalled. “I’d always understood healing and cure to be different, but this was when I really felt it.” ... “What if healing is choosing to understand that there’s going to be suffering that we can’t alleviate — and sometimes that’s our own — but the most important thing to bring to that is presence?” she said. [Click on the article's title to continue reading.] Editor's Note: Though not directly related to this article, read "Today's Encouragement" at the end of today's newsletter.

Spirituality as a determinant of health: Emerging policies, practices, and systemsHealth Affairs; by Katelyn N. G. Long, Xavier Symons, Tyler J. VanderWeele, Tracy A. Balboni, David H. Rosmarin, Christina Puchalski, Teresa Cutts, Gary R. Gunderson, Ellen Idler, Doug Oman, Michael J. Balboni, Laura S. Tuach, Howard K. Koh; 6/24Reimagining public health’s future should include explicitly considering spirituality as a social determinant of health that is linked to human goods and is deeply valued by people and their communities. Spirituality includes a sense of ultimate meaning, purpose, transcendence, and connectedness. With that end in mind, we assessed how recommendations recently issued by an expert panel for integrating spiritual factors into public health and medicine are being adopted in current practice in the United States.

171K+ clicks saved: Inside Johns Hopkins' nurse documentation revamp Becker's Clinical Leadership; by Erica Carbajal; 6/17/24 Across healthcare, efforts to advance documentation are often focused on enhancing physicians' workflow. But at Baltimore-based Johns Hopkins Hospital, leaders are equally focused on improving documentation in nursing. ... [The] American Nurses Credentialing Center recognized Johns Hopkins with 10 exemplars, one of which recognized the hospital as a leader in nursing informatics. Case in point: The hospital has saved nurses 170,620 clicks in four months, April Saathoff, DNP, RN, vice president and chief nursing information officer at Johns Hopkins Medicine, told Becker's. ... "Instead of the nurse having to go in and document on every single row on a head-to-toe reassessment for the patient, we now have some fields added to the top where the nurse can document reassessment changes noted or reassessed no changes," Dr. Saathoff said, adding that the changes are saving nurses an average of 13 minutes per reassessment. Editor's Note: What might your organization be able to streamline in your online documentation? Before IT or clinical management decides unilaterally, get input from your clinicians who make the visits and use the system. Include your psychosocial/spiritual care team members as well, as you might delete something crucial that they need.

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. 

"A wholeness that grows out of that which is lacking": Providing palliative care to patients with anorexia nervosaPsychiatric Times; by Rabbanit Allissa Thomas-Newborn, BCC; 6/13/24Sitting with the patient, I brought in a nesting doll, separating each doll and lifting the layers of self that surrounded the smallest version of herself within. We spoke about layers. Layers and walls we put up to protect ourselves. Layers that hide the things we are afraid for anyone—worst of all, ourselves—to see. Layers that embrace and comfort and hold us together. ... With the fullness of the nesting doll displayed, we gave witness to her story together. ... To see ourselves as stories of wholeness growing out of that which is lacking requires that we accept what is lacking without judgment. We do not need to fix or fill whatever is lacking, or to pretend it is not there. It is there and may always be there. And there is a wholeness that can still grow. Editor's Note: Rabbanit Thomas-Newborn is a board-certified chaplain at New York-Presbyterian Columbia University Irving Medical Center and Morgan Stanley Children’s Hospital. She specializes in Behavioral Health, Palliative Care, and Critical Care chaplaincy. She is the president of Neshama: Association of Jewish Chaplains. 

Hope in oncology: Where art and science collide Medscape; by Sharon Worcester, MA; 6/12/24 Carlos, a 21-year-old, laid in a hospital bed, barely clinging to life. Following a stem cell transplant for leukemia, Carlos had developed a life-threatening case of graft-vs-host disease. But Carlos' mother had faith. "I have hope things will get better," she said, via interpreter, to Richard Leiter, MD, a palliative care doctor in training at that time. "I hope they will," Leiter told her. "I should have stopped there," said Leiter, recounting an early-career lesson on hope during the ASCO Voices session at the American Society of Clinical Oncology (ASCO) 2024 annual meeting. "But in my eagerness to show my attending and myself that I could handle this conversation, I kept going, mistakenly." ... Carlos' mother looked Leiter in the eye. "You want him to die," she said. ...Editor's Note: Click on the title's link to continue reading this insightful reflection and discussion about the importance of "hope." Engage your oncology/palliative/hospice chaplains (hopefully CPE trained and Board Certified) with your medical team members to explore this core belief in "hope." Alert: AI referrals for palliative and hospice care are increasing exponentially. Clinicians must be sensitive to the human dimensions and dynamics of "hope" (which shift and change), and not be driven just by technological data.