Literature Review

Former M&S chairman: ‘Planning for my wife’s death with her made it easier to cope’ The Telegraph; by Leah Hardy; 9/17/24 When Patricia Swannell was diagnosed with incurable breast cancer, she planned both how she wanted to die and her legacy beyond the grave. On the first anniversary of her death, Patricia’s husband Robert speaks about her “beautiful” death, how she achieved it, and how it has helped the family in their grief. [Robert Swanell tells their story with the following key themes.]

Why so many patients are confused about CPR and do-not-resuscitate orders STAT; by Lindsey Ulin; 9/11/24 Inherently difficult conversations are made more so by a lack of physician training. When a patient is admitted to the hospital in the U.S., there’s a standard question physicians like me are supposed to ask: “If your heart stops beating, do you want us to do CPR?” On the surface, this may seem like a mechanic asking a customer, “If your car stalls, do you want us to jumpstart the engine?” Who would say no to this, especially in a hospital? The problem is that this exchange, which we call asking about “code status” in medicine, centers around a closed-ended question. Talking to a patient about their preferences for cardiac resuscitation, intubation, and/or other life-sustaining treatments needs to be a complete, often lengthy discussion, not just a box to check. ...

Clinician-and patient-directed communication strategies for patients with cancer at high mortality risk-A cluster randomized trialJAMA Open Network; Samuel U. Takvorian, MD; Peter Gabriel, MD, MS; 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, MPH1; 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; 7/24Serious 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.

Not intervening as a form of care: Negotiating medical practices at the end-of-life AnthroSource, by the American Anthropological Association; by Simon Cohn, Eric Borgstrom, and Annelieke Driessen; 8/27/24 ... The story of Keith, a patient living with multiple sclerosis but now with limited time left, introduces a common feature of biomedicine; once set on a particular trajectory, clinicians are often committed to a cascade of options without really questioning their ultimate value: "When I saw the doctor, the first thing he said was, ‘Oh, we can do this, or we can do that…’ So I said, ‘No, you won't. You won't do any of those things, thank you very much.’ And then when he suggested a drug that will give me ‘an extra few months’, I replied ‘Does that give me an extra few months now, or an extra few months at the end? Because I want the few months now, I don't want them at the end.’" Here, Keith recounts how his doctor seemed compelled to suggest one treatment after another with the intention of prolonging his life, rather than acknowledge that because he was dying, a different approach might be more appropriate. ...

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.

Study finds new program streamlined hospice transitions from the emergency department Medical Xpress; by Brigham and Women's Hospital; 7/8/24 For patients who are in the final stages of both gradual and sudden terminal illnesses, hospice care can provide safe, comfortable, and dignified care at the end of life. However, many patients, especially those with complex diseases and treatments, may end up in an emergency department (ED) and either die there or die shortly after being admitted into inpatient care at a hospital, despite their goals of care being better aligned with hospice care.

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.