Literature Review

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.

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?" 

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. 

Of Mice and Meaning: Multidisciplinary perspectives on the interconnectedness of pain, stress, and suffering The Free Library; by Claire Woodward and Taylor Woodward, Indiana University Bloomington; 6/13/24 ... We are siblings and scholars from seemingly disparate disciplines (one in humanities and one in neurobiology), yet we are both engaged in work to understand--and ultimately alleviate--various facets of pain and suffering. We currently work in two different laboratories at the same institution (Indiana University). Taylor works in a lab with mice and Claire works in a lab on storytelling. Our scholarship includes interpreting reactions to pain, stress, and suffering, both felt and observed, behavioral and aesthetic. Such observations provide further insights into understanding how the mind and the brain process pain and suffering. ...

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.

‘We don’t talk about death’: Winston-Salem journalist seeks to help people understand dying, deathbed visions Fox 8 WGHP - High Point, NC; by Bob Buckley; 5/29/24 There may not be anything that fascinates people more than death. It may be the thing many people avoid confronting the most. “In our culture, we’re pretty separated from death. And I don’t know the figures, but the vast majority … take place in hospitals. We don’t talk about death a lot in our culture,” said Phoebe Zerwick, a journalist based in Winston-Salem who recently wrote about deathbed visions for the New York Times Magazine. ... Zerwick became aware of the work of Dr. Christopher Kerr. ... “The biggest difference between hallucinations and these experiences is how the person is made to feel,” Dr. Kerr said. “Most hallucinations leave the person distressed and agitated and would be further confused. These experiences bring comfort. They bring meaning. They’re drawn from life. They really validate the life.” ... “I think the moral of the story is to be present and to be present with people when they are terminally ill. Be present when they’re dying,” Zerwick said.

Educating the future of hospice and palliative carePortage.life; by Center for Hospice Care; 5/21/24This spring students at the University of Notre Dame gained insight into the delivery of care to patients and families dealing with serious advanced illnesses. The university, in partnership with Center for Hospice Care (CHC), once again offered the course “Introduction to Hospice and Palliative Care” that was designed by Dr. Dominic Vachon, Director of Ruth M. Hillebrand Center for Compassionate Care in Medicine and Mike Wargo, COO and vice president of the Hospice Foundation. The five-week class covered a variety of topics focused on hospice and palliative care and was taught by CHC staff including physicians, social workers, chaplains, bereavement counselors and other hospice and palliative care support staff.

Psychological trauma can worsen symptom burden at end-of-life Hospice News; by Holly Vossel; 5/15/24 Recent research has found that traumatic experiences can lead to increased pain and symptom burden at the end of life, along with a greater likelihood of emotional suffering and isolation. Collective trauma experiences have been associated with higher instances of pain and dyspnea among more than half of seniors nationwide, a recent study found, published in the Journal of Pain and Symptom Management. Traumatized seniors are also more likely to experience loneliness, dissatisfaction with their life and depression. ... Hospices need a greater understanding of both the depth of these patients’ suffering and the scope of their unique needs to improve trauma-informed care delivery, [Dr. Ashwin] Kotwal said, assistant professor of medicine at the University of California San Francisco’s (UCSF) Division of Geriatrics.

When families fight over a relative with dementia, it’s time to call in the mediator The New York Times; by Paula Span; 5/13/24 Trained negotiators can help families struggling with vexing elder-care issues.  The four adult children were in agreement. Their father, William Curry, a retired electrical engineer and business executive, was sinking deeper into dementia. ... [But their mother] remained determined to continue caring for her 81-year-old husband at home, despite the increasing toll on her own health. ... As the weeks passed, “we were really at an impasse,” [a daughter] said. “Do you override your mother?” ...  [Increasingly,] families seek elder mediation privately, before disputes land in court and imperil or destroy family relationships. [Continue reading for descriptions of how mediation differs from arbitration, from family therapy, and for cautions about this being "a fairly new field with no nationwide certification or licensing requirements."]Editor's Notes: Executive leaders, what community education and resources are you providing for Advance Directives? What family systems education and and problem-solving are you providing for your interdisciplinary team members and grief counselors? Family conflicts are inherent--in some form or fashion--with almost anyone needing dementia care, especially when paired with palliative or hospice care. (If in doubt, ask your seasoned, front-line professionals.)

“Mental wellbeing is as important as physical wellbeing – both are interconnected” Marie Curie Hospice; by Anne Finucane, Marie Curie Senior Research Fellow, and David Gillanders, Senior Lecturer, Clinical Psychology, The University of Edinburgh, United Kingdom; 5/13/24 At least one in every four people living with a terminal diagnosis will experience depression, anxiety, adjustment disorder or low mood. Many more will experience distress because of deteriorating health and related uncertainty. Feelings of hopelessness, discouragement and even a desire for hastened death can occur. People have reported that psychological support helps them develop better coping strategies, helps them be more open to their situation and improves communication with their families and those involved in their care.Editor's Note: Executive leaders, what value do you give to your interdisciplinary team members and their contributions to patients' mental/emotional care? What advocacy, support and recognition do you have for your social workers, chaplains, counselors? What mental wellbeing measures do your employees experiences throughout your organization--and more directly--from your leadership with them? Perhaps it's time to "take the pulse" of your culture's mental wellbeing.

Volunteering in hospice helps Macalester students contemplate death's mysteries up close MSN - Minneapolis Star Tribune; by Katy Read; 5/10/24 "You think it will never happen to you, that it cannot happen to you, that you are the only person in the world to whom none of these things will ever happen," author Paul Auster wrote about humans' difficulty confronting our own mortality. ... Auster himself died last month at age 77. ... How can humans fully grasp the inevitability of our own death? It's a tough question to answer, maybe close to impossible. Three Macalester College students who just finished a course called the Anthropology of Death and Dying don't have the answer. Their professor, who has spent much of his career studying death as an anthropologist and a former hospice nurse, doesn't have an answer. A hospice nurse doesn't have the answer. And a hospice patient with lung cancer doesn't have the answer, even knowing he soon will confront its reality firsthand.