Literature Review

​​Bioethicists scrutinize Pontifical Academy for Life’s new guidance on withdrawing food, water The Catholic World Report; by Jonah McKeown; 8/16/24 After the Pontifical Academy for Life (PAFL) last month issued a booklet summarizing the Church’s teaching on a number of bioethical issues, the section on “artificial nutrition and hydration” (ANH) has some observers concerned about what they see as a departure from previous Church teaching. ... The Church’s teaching on this issue was recently in the news in the United States because of the ongoing case of Margo Naranjo, a disabled Texas woman whose parents, who are Catholic, announced last month that they had decided to allow Margo to die by starvation in hospice. They were prevented from doing so after a judge intervened. ... What does the Pontifical Academy's new document say? ... “[T]he doctor is required to respect the will of the patient who refuses them with a conscious and informed decision, also expressed in advance in anticipation of the possible loss of the ability to express himself and choose,” the PAFL wrote. he PAFL noted that Pope Francis has emphasized the importance of considering the whole person, not just individual bodily functions, when making medical decisions.Editor's Note: This "guidance" and discussion is much more complex than the summarized information above. Click on the title's link to read more.

Roles of chaplains and clergy in spiritual care for African Americans in hospice: a pilot studyAmerican Journal of Hospice and Palliative Care; by Denise D Quigley, Sara G McCleskey, Jason Lesandrini, Natalie McNeal, Nabeel Qureshi; 8/24 

Death is inevitable. It's time we learned to talk about it. MedPageToday; by Nidhi Bhaskar; 8/13/24 By fostering honest and compassionate discussions, we can provide patients with more dignity. Years ago, in a busy emergency department, I found myself joining my mentor at the bedside of an elderly man experiencing chest pain. After completing the physical exam, the doctor unceremoniously changed gears to abruptly ask our patient, "If your heart were to stop beating, do you want us to do everything?" Between the stress of the situation and the vague and awkward delivery of the question, our patient seemed (understandably) overwhelmed. So was I. ... End-of-life conversations can feel like a "word soup" of sorts ... it is easy for patients and providers alike to feel lost. ... Providers must also consider the nuances of cultural attitudes towards death; the location and family arrangements surrounding a person at the end of life; and the varying emotional responses and feelings of decision paralysis surrounding how one dies and how one feels about dying.Editor's Note: For a related article in our newsletter today, read "Examining the relationship between rural and urban clinicians’ familiarity with patients and families and their comfort with palliative and end-of-life care communication."

Resources for people coping with Alzheimer’s disease Everyday Health; by Pamela Kaufman; updated 7/29/24 No one should have to deal with Alzheimer’s alone. The government agencies, nonprofit groups, and other resources listed here can help people with Alzheimer’s and their caregivers cope with the disease through education, advocacy, support services, clinical trial opportunities, and blogs that share the wisdom of lived experience. [This essential list of resources includes:]

Proactive fall prevention: Elevating patient safety and healthcare excellenceHealthCare Business News; by Amy Hester; 7/26/24... The significance of fall prevention cannot be overstated, as it directly impacts patient outcomes and overall healthcare quality. With the patient safety solutions market growing at an expected rate of 11.2%, the importance of proactive fall prevention strategies becomes even more evident. ... In the United States, preventable medical errors, including falls, are the third leading cause of death. The impact of falls on patient health and recovery is profound, often leading to longer hospital stays, delayed recovery and increased risk of subsequent falls.Editor's Note: Proactive fall prevention is especially important for persons needing palliative or hospice care. As the person's health and mobility declines, they have to adjust to these changes mentally, emotionally, physically, and relationally. Recognizing decline can feel like defeat. Asking for help can be tough. Family members can expect the person to move more independently more than possible, leading to falls.

Caregivers of end-of-life patients reveal the last words they hear most often and the most common regrets from patients WhatsNew2Day; by Alexander; 7/27/24... While each person’s final moments are different, chaplains and palliative care nurses have said most people approach their death with “radical acceptance.” People who are actively dying also often have a new sense of clarity about the universe and may even have a temporary burst of energy or sudden moments of clarity if they have dementia. The last words patients usually say to their families are to tell them they love them... [Often, people] who are in the midst of dying want to be surrounded by their loved ones and pets. Their final words are often words of love and pleas for forgiveness, as well as expressions of regret, ... [Another described that people show] "a desire for connection" with loved ones and faith. Editor's Note: This article provides a balanced scope of descriptions from several professionals, notably Catherine Duncan, Annemarie Switchulis, Neal Shah, and Zackary Price. In this day of social media, some hospice professionals (past or present) tout definitive, authoritative descriptions of what all dying persons experience, with too many assumptions and generalizations. Beware what you read and distribute, especially if the tone and language (of other articles) are sensationalized in a way to garner social media "expertise," followers and Shares--at the expense of more balanced, sensitive, diverse, personalized experiences.

Palliative Medicine - June 2024 Issue

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: