Literature Review

My Dad had an Advance Directive. He still had to fight to die Newsweek - My Turn; by Maggie Schneider Huston; 8/26/24 My mom  died peacefully. My dad died 72 days later, angry at the doctors for ignoring his wishes. ... Dad had heart surgery on December 20, 2023. An hour after the surgery ended, his vital systems started shutting down. A cascade of interventions, one after another, kept him alive. Four days later, he said: "Put me on hospice." The doctor dismissed this request, rolling his eyes and saying: "Everyone on a ventilator says that." On Christmas Day, my father asked for hospice again. He was in pain. He knew his recovery would be long and ultimately futile. He would never have an acceptable quality of life again. ... Dad's care team insisted palliative care was the same as hospice care, but he knew the difference. He wanted hospice care. Finally, they reluctantly agreed and called for a social worker to make arrangements. It wasn't necessary. Once they removed his treatment and relieved his pain, he died five hours later. ... Editor's Note: This article is not about Medical Aid in Dying (MAiD). It is about honoring Advance Directives, person-centered care with communications and actions related to "palliative" vs. "hospice" care.

​​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.

Factors associated with Do Not Resuscitate status and palliative care in hospitalized patients: A national inpatient sample analysis Palliative Medicine Reports; by Jean-Sebastien Rachoin, Nicole Debski, Krystal Hunter, Elizabeth CerceoIn the United States, the proportion of hospitalized patients with DNR, PC, and DNR with PC increased from 2016 to 2019. Overall, inpatient mortality and LOS fell, but hospital charges per patient increased. Significant gender and ethnic differences emerged. Black patients and males were less likely to have DNR status and had higher inpatient mortality, LOS, and hospital charges.

Person-centered, goal-oriented care helped my patients improve their quality of life Journal of the American Board of Family Medicine; by Lee A. Jennings and James W. Mold; orignially posted 5/24 issue, again on 8/15/24 When the goal is to help patients improve their quality of life, it makes sense to focus directly on the activities and relationships that are most important to each patient. This can be accomplished most effectively by following a three-step process that includes 1) connecting with the patient around what matters to them, 2) co-creating a goal-oriented plan, and 3) collaborating with patient, family, team members, and consultants to increase the probability of success. Once this approach has been mastered and the necessary systems, processes, and relationships are in place, this should not take more time than a problem-oriented approach, and it will almost certainly be more satisfying for both physician and patient. Editor's Note: Simple. Effective. Meaningful.

Advance Care Planning: Perspectives of People Living in PrisonJournal of Hospice and Palliative Nursing; by Erin Kitt-Lewis, Nanda Zheng, Susan J Loeb; 8/24A person-centered approach to advance care planning is recognized as a fundamental need, yet its routine implementation remains a challenge across disparate settings, such as prisons. The purpose of this study was to gain the perspectives of people who are incarcerated about advance care planning... Findings contribute to identifying best practices for infusing advance care planning into prisons.

Advance care questions to ask your loved one Parkview Health; 7/27/24 ... To ease into a conversation about decisions and scenarios, we can start with questions that are easier to answer, like: What does a good day look like? If you got to spend the day with your favorite people doing your favorite things, what would you be doing? With whom? ... From there, we can talk about more specifics related to healthcare decisions, such as: If your heart and breathing stop suddenly, would you want to have CPR (cardiopulmonary resuscitation), which can include pushing on your chest, breathing support, medications, and electrical shocks? ... If you knew that death was likely to happen in a brief period of time, would you want to be in the hospital, in a nursing care facility or at home? ... Editor's Note: The wording, sequencing, and open-ended format of these questions gently open the door for the person to reflect on and describe one's wishes, in contrast to some advance care planning questions that focus on filling out a form. Yes, Advance Directives forms are crucial. However, the forms are a tool for now and for needs ahead. The focus is the person, while building a context of relationship and trust.

5 evolving trends on end-of-life matters The Leavenworth Echo, Wenatchee, WA; 7/21/24 One of the most difficult conversations many people have in their lives involves the end of life. While often uncomfortable to think about or discuss with others, talking about and sharing end-of-life wishes should be a common occurrence. In fact, 91% of Americans believe talking about death and dying is healthy and normal, but 1 in 4 (27%) are uncomfortable actually doing it, according to a first-of-its-kind survey commissioned by the National Funeral Directors Association (NFDA), the world’s leading and largest funeral service association. With nearly one-third (31%) of survey respondents admitting they’re uncomfortable thinking about their own mortality, Remembering A Life, the organization’s online resource for accessing grief resources and funeral planning information, is offering a free downloadable guide, Start the Conversation, to help family and friends have meaningful conversations about loved ones and how they’d like to be remembered.

[Consumer Reports] The last goodbye: How to plan a funeral Consumer Reports; by Janet Siroto; 7/7/24 A complete guide to giving loved ones the right send-off--from traditional services to new green burials. Six years ago, Kelly Avery and Kristin Harper, sisters from Birmingham, Ala., gathered their families by the sky-blue ocean waters of Destin, Fla., to memorialize their mother, Barbara Harper. ... They shared funny stories and music, and shed some tears as they spread their mother’s ashes from the deck of a large boat.  ... The experience not only gave the family a meaningful way to pay tribute to Barbara but also got the sisters thinking about their own memorials. The key is making some choices well beforehand, which more people appear to be doing. For instance, according to an April 2024 Consumer Reports nationally representative survey (PDF) of 2,042 adults in the U.S., 50 percent said they planned or intended to plan ahead either for their own funeral or for someone else’s. Read on for a rundown of possibilities and costs. ...

Improving advanced care planning for late-stage cancer Medical Xpress; by Melissa Rohman; 6/24/24 Multilevel care interventions improved clinician–documented advanced care planning (ACP) compared with a clinician-level intervention alone for patients with genitourinary cancer, according to findings published in JAMA Oncology. "Clinicians often have limited time to assist patients in fully understanding ACP. This intervention is one approach to improve ACP and care delivery among patients with advanced stages of genitourinary cancer," said Gladys M. Rodriguez, MD, MS, assistant professor of Medicine in the Division of Hematology and Oncology and lead author of the study. For patients diagnosed with late-stage cancer, ACP can help reduce unnecessary acute care, increase palliative care and improve quality of life. However, previous reports have found that less than 20% of patients will engage in ACP with their health care providers. ... The primary outcome was ACP documentation in the electronic health record by the patient's oncology clinician within 12 months. Secondary outcomes included shared decision-making, palliative care use, hospice use, emergency department visits and hospitalizations within 12 months.

It’s your funeral! How to plan ahead for the best party you’ll never attend The Guardian; by Doosie Morris; 6/14/24 Years before the indomitable Joan Rivers died in 2014 she immortalised hopes for her own farewell in her memoir. ... The rise in so-called “death positivity”, along with the mortal reality check wreaked on us by the pandemic, has helped to reframe death as a part of life for many of us. Taboos around discussing death are breaking down and planning your own funeral is increasingly considered as responsible as writing a will. ... While the latest Australian Funeral Industry report found less than one in five Australians have actually planned their own funeral, a definite vibe shift is occurring and 90% of people say they want to. ... “When people say ‘I don’t want a funeral’ I remind them it’s not actually for them,” Griffith says. “You might think you’re doing your loved ones a favour, but you are actually denying everyone who needs somewhere to put their grief.” ...

End-of-life talks, planning benefit all racial groups, study finds McKnights Long-Term Care News; by Kristen Fischer ... Having formal advanced care planning (ACP) in place was linked to higher odds of receiving care that aligned with individuals’ goals, the researchers found. The study evaluated how ACP and goal-concordant care (GCC) — an approach that aims to meet the patient’s goal and includes ACP and conversations about care goals —  affected people of different races. The report was published on May 18 in the Journal of the American Geriatrics Society.  The framework is especially important for people in racial or ethnic minority populations who have a greater risk of poor end-of-life outcomes and don’t receive GCC. ... Older adults are more likely to receive hospice care at the end of life compared to previous decades, but a lot of people still report care that didn’t meet their preferences, the authors noted.

Early palliative care perceptions by patients with cancer and primary caregivers: metaphorical languageBMJ Supportive & Palliative Care; by Elena Bandieri, Sarah Bigi, Melissa Nava, Eleonora Borelli, Carlo Adolfo Porro, Erio Castellucci, Fabio Efficace, Eduardo Bruera, Oreofe Odejide, Camilla Zimmermann, Leonardo Potenza, Mario Luppi; 5/13/24Methods: Data were collected through a pen-and-paper questionnaire on respondents’ perceptions of the disease, its treatment and their idea of death, before and after receiving EPC [early palliative care]. The data were analysed by identifying all metaphorical uses of language, following the ‘metaphor identification procedure’ proposed by the Praggjelaz Group.Results: Metaphors were used from a variety of semantic fields. EPC was described using spiritual terms, to indicate that this approach was instrumental in ‘restoring life’, ‘producing hope’ and making patients feel ‘accompanied’. The most recurrent metaphors were those referring to light and salvation; spatial metaphors were used to describe the treatment and the hospital as a ‘safe haven’ and ‘an oasis of peace’. 

Utah man angry: "Why am I still alive?" Cat Country 107.3/94.9; by Andy Griffin; 5/10/24 George Ball (not his real name) is angry. He's dying soon, he knows that. But what he's really mad about is that he's still alive. "I signed the paper. I made the request," he said. "So, why am I still alive?" ... The 72-year-old Utahn recently had a heart attack (cardiac arrest), and was essentially dead for a few minutes before being resuscitated at a Utah hospital. Life-saving measures were taken, including shooting adrenaline into his heart. He was gone, but they brought him back. Happy ending, right? The only problem was, Ball had signed and certified a DNR -- a do not resuscitate order -- so that if he, well, died, heroic measures would not be taken to bring him back to life. ...