Literature Review

Global collaboration launches culturally inclusive palliative care education tool Hospice News; by Holly Vossel; 9/16/24 An international collaboration has led to the development of a new palliative care training tool aimed at improving quality and equitable access. Health systems across the globe are recognizing a growing need to boost the supply of providers able to care for a swelling, aging population of serious and terminally ill patients. Rising demand was among the driving forces behind the newly unveiled COllaboratively DEveloped culturalY Appropriate and inclusive Assessment tool for Palliative Care Education (CODE-YAA@PC-EDU). The palliative care education tool was developed in concert by the Council of Europe, the World Health Organization (WHO) and the United Nations. The organizations joined forces to design a sustainable training model that could build up the palliative workforce. The project is supported in part by the research network European Cooperation in Science and Technology (COST).

Two decades after 9/11, Tarrant County interfaith group brings women together Fort Worth Report, Fort Worth, TX; by Marissa Greene; 9/10/24 Janice Harris Lord remembers Sept. 11, 2001, crystal clear. ... In late 2001, it struck Harris Lord that there was something she could do: pull women of different faiths together. By January 2002, Harris Lord formed Daughters of Abraham, a discussion group made up of local Muslim, Jewish and Christian women. The group serves as a venue for women to learn about and build friendships with women of different religions. In its 22-year history, the group has grown from 18 women to various regional groups in Fort Worth, Arlington, northeast Tarrant County and Dallas. ... In the group’s two-decade history, the most poignant thing Harris Lord learned was the tradition that Jewish and Muslim families undergo when preparing a deceased loved one for burial. Muslim and Jewish families participate in a tradition called ghusl in Arabic or tahara in Hebrew, which involves washing and purifying a body before burial. It is considered one of the greatest good deeds someone can do for another in the faiths. When Harris Lord’s husband tragically died ..., she knew she wanted to honor him in that way. “(The hospice nurse) gave me some soap and water, and we shaved him, and I washed his hair and got it combed right, like he wanted it,” Harris Lord said. “It was beautiful. I think it helped me more with my grieving than anything, because I knew I had done the very last thing I could do for him.” 

Bittersweet bouquet: Hospice worker transforms her grief into a garden of memories ABC 13, Grand Rapids, MI; by Matt Gard; 9/5/24For the most part, Kaitlyn Dawson’s desk at the Emmanuel Hospice office is exactly what you’d expect it to be. On her left, she has office supplies, ... but it’s what’s on the wall over her left shoulder that really gives this workspace character. Inside three separate picture frames are hundreds of flowers. Kaitlyn was an art major at Grand Valley State University before she switched to social work, and she still has a passion for creativity. Every one of those flowers – whether red, purple or orange - was her creation. ... “These flowers represent patients that I have been able to be a part of their journey at end of life,” said Kaitlyn, who has worked in hospice for about four years. “I had one particular case that was really difficult, and I remember leaving that visit and thinking ‘I'm going to start doing this process in honor of her.’ And I went to the store and I bought pencils and a notebook and decided I was going to do flowers. It was easy. It was simple. It was something I could sit down and do in the evening, and if I lost a couple of people that day, I could draw a couple of flowers.” Before Kaitlyn knew it, she had a "bittersweet bouquet."

Avoid these mistakes in palliative care to enhance your loved one's well-being Leesville Leader, Lake Charles, LA; by Evertise Digital; 8/26/24 For people with life-threatening diseases, palliative care is crucial in providing comfort and improving quality of life. It’s essential to focus on the details and avoid common mistakes in order to deliver good treatment. Mistakes in palliative care can inadvertently cause discomfort or diminish the quality of the support provided. It’s critical to recognize and steer clear of certain mistakes to guarantee that your loved one receives the finest treatment possible. By focusing on these key areas, you can enhance their well-being and provide the compassionate, attentive care they need during this challenging time.

​​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.

"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 ..."