Literature Review

[Great Britain] British lawmakers give initial approval to a bill to allow terminally ill adults to end their lives AP - The Associated Press, London, UK; by Brian Melly and Pan Pylas; 11/29/24 British lawmakers gave initial approval on Friday to a bill to help terminally ill adults end their lives in England and Wales, following an impassioned debate that saw people sharing personal stories of loss and suffering. Members of Parliament approved the assisted dying bill by a 330-275 vote, signaling their approval in principle for the bill, which will undergo further scrutiny before it goes to a final vote. Friday's vote came after hours of debate — emotional at times — that touched on issues of ethics, faith and law. There was no braying and shouting that often marks debates in the House of Commons and speeches were considered respectfully and heard in silence. ... Supporters said the law would provide dignity to the dying and prevent suffering, while protecting the vulnerable. Opponents said the disabled and elderly were at risk of being coerced, directly or indirectly, to end their lives to save money or relieve the burden on family members. Others called for the improvement of palliative care to ease suffering as an alternative.

No One Dies Alone: new Parker hospital program offers companionship to those at the end of life Parker Chronicle; by Haley Lena; 11/27/24 Katherine Wiley, a volunteer at AdventHealth Parker, was in the hospital’s emergency department when she saw first-hand how being alongside a stranger during their final moments of life can have a profound impact on those around them. Wiley sat with an elderly woman who was dying with no one around. The patient’s sons were trying to get to the hospital from Colorado Springs but didn’t make it in time. “When they got there, I told them that I had been with their mom so she was not alone and they were very grateful,” said Wiley. Wiley shared this story with the CEO of the hospital, Michael Goebel, at the annual volunteer luncheon last year, and the following week, the No One Dies Alone program was being set up. “We can provide companionship to patients in the dying process who are truly alone,” said Wiley. “In doing so, (it) provides a gift of respect and dignity to another human being at the end of life.” The volunteers of the program are called “compassionate companions.” They do not provide medical care, but they assist with comfort care measures – they sit beside the patient, hold their hands, play soothing music or read to the patients. For as many circumstances there are that lead a person to be hospitalized, there are also as many reasons why a patient is alone. The patient could have outlived other family members and friends, said Wiley, or are estranged from their family. It could be because the patients themselves don’t want to have their family see them die, but don’t want to be alone. Or they could be a John/Jane Doe who was in an accident. “We want to be there for them, whatever those reasons are,” said Wiley. “This sort of thing feeds my soul.”

Pet Peace of Mind program alleviates stress for hospice patients Poteau Daily News; by Ashley Torres; 11/26/24 Heart of Hospice in Poteau has announced a new program that will be helping with pet care while patients are on hospice care. The Pet Peace of Mind program, which began at Heart of Hospice Poteau on Nov. 15, aims to support the bond between pets and hospice patients during their final days. According to Heart of Hospice, the Pet Peace of Mind program “recognizes and actively supports the unique bond between hospice patients and their pet,” and “aligns with the Heart of Hospice mission to provide exceptional care and unparalleled service to the patients and families who have placed their trust in us.” The program is funded through donations, and the work is done by volunteers.  ... The Pet Peace of Mind program is aptly named, because it is all truly done to alleviate the anxiety and stress that hospice patients often feel while worrying about what will happen to their beloved pets when they are gone. Knowing that their pet’s needs are being met while they are on hospice care, and knowing that their pet will be taken care of even afterwards, allows the patient to focus on their own comfort during their last days.

New HFSA Consensus Statement provides practical guide for implementing palliative care with heart failure patients PR Newswire; by Heart Failure Society of America; 11/26/24 Patients with heart failure (HF) suffer from compromised quality of life, high mortality, and complex medical decision-making. Palliative care is an essential part of a comprehensive HF care plan. Integration of Palliative Care into Heart Failure Care: Consensus-Based Recommendations from the Heart Failure Society of America (HFSA), published today in the Journal of Cardiac Failure (JCF), is a practical guide for implementing palliative care as a component of overall HF care. It has been shown that palliative care interventions improve disease-specific quality of life, symptom control, and caregiver burden among patients with HF. Authors of the statement are indicating that HF clinicians should be skilled in providing primary palliative care with competence in basic domains including the management of physical and psychosocial symptoms and serious illness communication.

If my dying daughter could face her mortality, why couldn’t the rest of us? DNYUZ, appearing first in The New York Times; Ms. Wildman; 11/25/24 The first week of March 2022, I flew to Miami with my 13-year-old daughter, Orli; her 8-year-old sister, Hana; and my partner, Ian. We were, by all appearances, healthy. Robust, even. In reality, we were at the end of a reprieve. Orli’s liver cancer had by then been assaulted by two years of treatments — chemotherapy, a liver transplant, more chemotherapy, seven surgeries. Now new metastases lit up a corner of one lung on scans, asymptomatic but foreboding. We asked her medical team if we might show her a bit of the world before more procedures. Our oncologist balked. Hence, this brief weekend away. When we arrived at the beach Orli ran directly to the water, then came back and stretched out on a lounge chair. She turned to me and asked, “What if this is the best I ever feel again?” Three hundred and seventy-six days later, she was dead. In the time since she left us, I have thought often of Orli’s question. All that spring, Orli asked, pointedly, why did we think a cure was still possible, that cancer would not continue to return? Left unspoken: Was she going to die from her disease? It was a conversation she wanted to have. And yet what we found over the wild course of her illness was that such conversations are often discouraged, in the doctor’s office and outside it. ... [Click on the title's link to continue reading this profound story.]Editor's note: While families are gathered for Thanksgiving, many health changes will be observed since this time last Thanksgiving, with countless unknowns to unfold until Thanksgiving next year. Tune into the wide scope of conversations that people do want to have, don't want to have, and--perhaps--that your own family needs to have, with grace and care for all.

Your children or spouse might not be the best power of attorney — what you can do about it Medical Economics; by Howard Enders; 11/25/24 It’s easy to assume that your spouse or children will be the most suitable candidates for this role, but that isn’t always true. Family members may be emotionally compromised or lack the expertise needed to handle complex medical or financial decisions. So, how can you ensure that your health, finances and legacy are protected? Let’s explore the key elements of estate planning, including setting up the right power of attorney, maximizing savings for future medical expenses and preventing unnecessary financial burdens on your loved ones. ... [Click on the title's link to continue reading.]

My top 10 list for living with cancer Cure; by Kelly Irvin; 11/19/24 I’m coming up on the ninth anniversary after my diagnosis of stage 4 ovarian cancer in January 2016. As always, this causes me to ponder my life as someone living with cancer for the rest of my life. I ponder why I’m still here and others are not. Have I used this time well? What have I learned that might be of use for other “lifers,” as well as those just starting on this journey? It’s that last question I’m focused on here. The following is my top 10 list for living with cancer when there’s no likelihood of hearing those magical words “cancer-free.” 

The work of hospicing Stanford Social Innovation Review; by Vanessa Andreotti and Habib Nabatu; Winter 2025 issue, 11/20/24As we stand at the precipice of endings—of species, ecosystems, organizations, and systems themselves—the work of hospicing is to move beyond fear and embrace the deep transitions ahead with wisdom. To be stewards of this time, we must develop the practices and capacities to tend to these endings, not with urgency or control, but with a kind of stillness that invites the birth of new ways of being. Endings are not failures; they are part of a cycle that requires presence, reverence, and humility. Our hyperfocus on growth and expansion has left us ill-prepared to sit with death—whether it be the death of industries or the biosphere—and this discomfort with grief prevents us from being fully alive in the present. How might we allow the crumbling of outdated structures without rushing to rebuild too quickly? How might we hold space for what is irreversibly changing, without rushing to save or fix it? ...

People with Parkinson’s Disease (PD) face disproportionate rates of harm in hospital setting  Parkinson's Foundation, New York and Miami; Press Release; 11/18/24 The Parkinson’s Foundation published a new article in the December issue of The Joint Commission Journal on Quality and Patient Safety titled “Protecting Parkinson’s Patients: Hospital Care Standards to Avoid Preventable Harm.” The article identifies sustainable solutions to improve care in the hospital for people with Parkinson’s disease (PD) and details how these solutions may be generalized to develop a practical, disease-agnostic care model for all hospital and health systems that wish to avoid preventable harm. ... People with PD are at increased risk of hospitalization, with more than 300,000 people with PD hospitalized each year. While hospitalized, people with PD face increased risk of preventable harm, including longer hospital stays and deterioration of PD symptoms. Adverse outcomes range from temporary, such as higher rates of delirium, to permanent damage, including higher mortality.

Hazel Dell couple face manslaughter charges in death of relative, 87, in their care The Columbian, Clark County, WA; by Becca Robbins; 11/14/24A Hazel Dell couple are facing charges of manslaughter and criminal mistreatment for the 2022 death of an 87-year-old relative who was under their care. ... In April 2022, state Adult Protective Services referred a report to Clark County sheriff’s detectives about the March 18 death of Marilyn Rogers at a Longview hospice facility. The woman had lived with Joel and Kathryn Rogers, her son and daughter-in-law, at their apartment before her death, according to a probable cause affidavit. ... Emergency room staffers noted Marilyn Rogers had multiple ulcers and pressure wounds that appeared to be infected. She also showed signs of dehydration and malnourishment. Blood work showed she also suffered from sepsis due to infection. ... Doctors recommended Marilyn Rogers be placed in hospice, and once she was, staff said Kathryn and Joel Rogers never visited her. Hospice staff said they struggled to get in touch with the couple for the roughly 10 days Marilyn Rogers resided there, the affidavit states.

[UK] Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysisPalliative Medicine; Amy Brown, Sarah Yardley, Ben Bowers, Sally-Anne Francis, Lucy Bemand-Qureshi, Stuart Hellard, Antony Chuter, Andrew Carson-Stevens; 10/24 About 25% of palliative medication incidents involve continuous subcutaneous infusions. Complex structural and human factor issues make these risk-prone interventions. Primary incidents (most proximal to patient outcomes) leading to inappropriate medication use (including not using medication when it was needed) were underpinned by breakdowns in three major medication processes: monitoring and supply ... administration ... and prescribing ... Recurring contributory factors included discontinuity of care within and between settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Psychological harms for patients and families were identified. System infrastructure is needed to enable timely supply of medication and equipment, effective coordinated use of continuous subcutaneous infusions, communication and continuity of care.

Meals on Wheels substantially reduces risk of senior hospitalizations: report McKnights Home Care; by Adam Healy; 11/8/24 Home-delivered nutritious foods programs can help keep seniors out of the hospital and reduce their feelings of social isolation, according to a new report by Meals on Wheels and home care technology firm WellSky. The report examined how Meals on Wheels programs helped seniors recover after being discharged from a hospital stay. Each meal delivery also involved a social determinants of health assessment, which allowed Meals on Wheels staff to engage with participants and gauge their wellness and safety. After 30 days of the program, the researchers observed an 85% decrease in hospitalizations among participants. Approximately 98% of meal recipients said that Meals on Wheels helped their recovery, and 61% said it lowered their feelings of social isolation.Editor's note: While we know hospice patients experience a significant decline in appetite, the person's changing needs for nutrition continue. Pair this data with several recent articles we've posted regarding seniors' struggles compounded by living alone, isolation, and depression. We invite you to explore this educational/support video for caregivers/families of persons experiencing serious illness, palliative, or hospice care: Small Words - Big Meanings: EAT. Disclosure: Composing Life Out of Loss is a sponsor of our newsletter.

National Partnership for Healthcare and Hospice Innovation, and American Cancer Society unveil Advanced Cancer Guide to Support Patients & Families Facing Terminal Cancer Cision - PR Newswire, Washington, DC; 11/13/24 Today, the National Partnership for Healthcare and Hospice Innovation (NPHI), the national voice for nonprofit serious illness care providers, proudly introduces the Advanced Cancer Care Patient & Caregiver Guide, developed in collaboration with the American Cancer Society. This essential resource is designed to assist individuals living with cancer and their caregivers by providing critical information that enables them to receive care in the comfort of their own homes. ... This comprehensive guide aims to minimize hospital and emergency room visits, easing stress for patients, families, and medical facilities alike. Drawing on the expertise of over 100 serious illness care providers and the American Cancer Society, it delivers practical, reliable support for those navigating cancer care at home. Editor's note: The National Partnership for Healthcare and Hospice Innovation (NPHI) is a sponsor for our newsletter.