Literature Review

Commentary: Prognostication in Alzheimer's disease and related dementias Journal of the American Geriatrics Society / Early View; by Natalie C. Ernecoff PhD, MPH, Kathryn L. Wessell MPH, Laura C. Hanson MD, MPH; 8/8/24  ... Hospice provides comfort-oriented care, emphasizing patient-tailored elements of quality of life, including time with family, access to nature, and music. In late-stage ADRD, studies show that a majority of families prioritize comfort-oriented treatment, and understanding prognosis may help them align treatments accordingly. Yet, only 15% of people enrolled in hospice with a primary diagnosis of ADRD. This is due to difficulty estimating 6-month prognosis required for hospice eligibility—ADRD carries a prognosis of 12–18 months in the latest stage. While low rates of live discharges from hospice are a regulatory requirement for hospices, people who are increasingly experiencing ADRD progression lose access to those beneficial hospice services. ...

Amid trauma and burnout, it ‘takes courage’ to reflect on mental, emotional well-being Healio; by Jennifer Byrne; 7/31/24 ... [William E. Rosa, PhD, MBE, MS] began to realize that in the stressful, devastating situations he and his colleagues faced daily, there was much to be learned from the principles of trauma-informed care. ... “This is the idea that cultivating an awareness can prevent us from re-traumatizing ourselves and others,” he said. “I think it starts with reflecting on — and telling the truth about — our mental and emotional well-being. That takes courage.” In acknowledging the emotional scars, brokenness and vulnerability that comes from tragedy and loss, individuals can begin to heal a lifetime of stored and unresolved trauma, Rosa said. “As a workforce, you and I see unacceptable rates of suicide, burnout, moral distress and attrition,” he said. “It’s time that we come to safe and supported terms with our trauma — not just as individuals, but as a collective, not only for the patients and families we serve, but for us to survive.”Editor's Note: In this article, Dr. Rosa identified "the emotional impact of taking yet another patient off the ventilator at the end of life." Recent articles we've posted in this newsletter about trauma-informed care been in our "Top Reads." While those articles focused on trauma-informed care of the persons you serve, this focuses on the persons who serve, your all-important direct patient care clinicians.

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.

Further psychometric evaluation of the eight-item Hospice Philosophy Scale: Results from a national sample of interdisciplinary hospice clinicians Journal of Applied Gerontology; by Todd D Becker, Sarah E Clem, Paul Sacco, John G Cagle, Joan K Davitt, Nancy Kusmaul; 7/20/24 online ahead of print This study examined the psychometric properties of the eight-item Hospice Philosophy Scale (HPS-8) through confirmatory factor analysis; differential item functioning by age, gender, race, and professional discipline; and internal consistency reliability. ... Our results support the HPS-8 as a valid and reliable measure of attitudes toward the hospice philosophy of care in hospice clinicians.

Mayo Clinic Minute: How extreme heat, humidity affect your health News Tribune; by Tribune News Service; 7/16/24 Many parts of the U.S. continue to grapple with oppressive heat and humidity. This can prevent the body from cooling down, increasing the risk of heat cramps, exhaustion and heatstroke. Dr. Jesse Bracamonte, a Mayo Clinic family medicine physician, said the extreme heat and high humidity can be a dangerous mix. "High heat and high humidity can place one at risk for serious illness if people aren't careful. The heat can affect people's bodies by increasing the core body temperature and ability to sweat, and cause dehydration that can cause further medical problems and ensuing issues, and eventually can lead to heat exhaustion, in some cases, severe heat illness, known as heatstroke," Bracamonte said. Editor's Note: What information and support are you providing for your clinicians who travel between visits and for your patients who might be affected by extreme heat and humidity? What simple, practical adaptations might you create, like disposable water bottles for staff as they leave your building (with a sign of support and basic info)?

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 ..."

Anxiety and resilience in palliative medicine physicians BMJ Supportive & Palliative Care; by Cristhian Alexis Velásquez Marín, Carlos Javier Avendaño-Vásquez; 7/2/24, online ahead of printTo identify the relationship between the degree of anxiety and the capacity for resilience in palliative care physicians ..., [we] included 42 Colombian Palliative Care Physicians and administered a sociodemographic questionnaire, the Zung Anxiety Scale and the Resilience Scale. Results: 42 palliative care physicians with an average age of 41 participated in the study. Anxious symptoms were present in 100% of the physicians evaluated. Mild or moderate anxiety was identified in 93.7% of the population and 6.3% of people with severe anxiety symptoms. ... Our results reflect that the population of palliative care physicians has a higher risk and exposure to developing anxiety and its adverse outcomes. We found higher anxiety levels compared with other studies so this population requires greater vigilance and intervention in treating and preventing mental health difficulties.Editor's Note: Executive leaders for palliative care services, use this research to be aware of possible stress-related tolls on your palliative physicians and team members. Ask. Generate dialogue. Do not assume that this applies, but rather use it to tune into and improve the support your physicians need. While this research was in Columbia, it resonates a U.S.recurring trend of the unionization of physicians, often related to burnout and stress overload.

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.

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. 

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.

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. ...