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All posts tagged with “Clinical News | Advanced Illness Management News.”
Your children or spouse might not be the best power of attorney — what you can do about it
11/26/24 at 03:00 AMYour 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.]
How to manage sibling relationships strained by family caregiving
11/26/24 at 03:00 AMHow to manage sibling relationships strained by family caregiving AARP; by Christine A. Di Pasquale; 11/25/24 ... Conflict around caregiving is not unusual, especially between sisters, says Megan Gilligan, Ph.D., an associate professor of Human Development & Family Science at the University of Missouri. Gilligan is a co-author of the longitudinal Within-Family Differences Study that looks at understanding the “relationships between parents and their adult children and grandchildren, as well as between siblings in adulthood.” Gilligan and her colleagues found that sisters tend to be more critical of one another than sons when it comes to parental caregiving. “Daughters are raised with a sense of expectation, obligation, of wanting to provide that care and wanting that care to look a certain way,” she explains. “And we found that when multiple daughters were involved in care, maybe sometimes they’re kind of stepping on each other’s toes whereas … sons were more likely to kind of step back and let sisters navigate that,” she says. ... Gilligan suggests that we replace the idea of equality with equity in caregiving. Siblings should ask what the parents want each child to do and then divide that work equitably if not equally in order to reduce sources of stress for the ailing parent and among siblings.
If my dying daughter could face her mortality, why couldn’t the rest of us?
11/26/24 at 03:00 AMIf 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.
My top 10 list for living with cancer
11/22/24 at 03:10 AMMy 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.”
Rise in pancreatic cancer tied to better detection, study suggests
11/22/24 at 03:00 AMRise in pancreatic cancer tied to better detection, study suggests Becker's Hospital Review; by Elizabeth Gregerson; 11/19/24 The rise in pancreatic cancer diagnoses can be attributed to previously undetected disease and not a rise in cancer occurrence, according to a study published Nov. 19 in the Annals of Internal Medicine. Researchers from Boston-based Brigham and Woman's Hospital and Austin, Texas-based Dell Medical School analyzed U.S. Cancer Statistics and National Vital Statistics System data of adults aged 15-39 from between 2001 and 2019 for the study. Here are five notes from their findings:
The work of hospicing
11/22/24 at 03:00 AMThe 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? ...
Is your doctor using ‘never words’ that make you feel worse?
11/21/24 at 03:00 AMIs your doctor using ‘never words’ that make you feel worse? Everyday Health; by Lisa Rapaport; 11/19/24 Words matter — especially when it comes to how doctors speak to patients and families facing a scary medical diagnosis. That’s because the exact words doctors use to explain complex health situations can make or break whether people feel heard and respected during appointments — and influence whether they follow doctors’ orders afterwards, according to a new survey published in Mayo Clinic Proceedings. Key Takeaways:
People with Parkinson’s Disease (PD) face disproportionate rates of harm in hospital setting
11/20/24 at 03:00 AMPeople 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.
How to keep loved ones in hospice care included during the holidays
11/19/24 at 02:00 AMHow to keep loved ones in hospice care included during the holidays WHSV 3, Harrisonburg, VA; by Olivia Whitehouse; 11/14/24 The holiday season can be difficult to navigate when a loved one is in hospice care. Legacy Hospice in Fishersville said there are ways to keep them included in the holiday festivities. RN Clinical Director Sarah Campbell said you can move a loved one’s bed to the living room so they can be a part of the conversation. For example, if the patient can still speak, they may ask to make their favorite meal or recipe. “They are still included in that meal, even if they may not want to eat it or be able to get up to the table — they still feel part of the process,” Campbell said. Campbell said hearing is one of the last senses to go. Even if a hospice patient can’t respond to you, she said it is important to talk to them and you should refrain from talking about them like they are not in the room.
Expert advocates for timely palliative care for patients experiencing heart failure during address to URI College of Nursing
11/18/24 at 03:00 AMExpert advocates for timely palliative care for patients experiencing heart failure during address to URI College of Nursing The University of Rhode Island. Kingston, RI; by Patrick Luce; 11/14/24 While palliative care is common for patients diagnosed with life-threatening conditions like cancer or Alzheimer’s Disease, it is less commonly prescribed to patients suffering from heart failure, a missed opportunity to provide enhanced care for those critical patients, according to Yale University Professor Shelli Feder, who addressed Rhode Island nurses, students and professors during [the URI College of Nursing Distinguished Lecture] on Nov. 13. ... Feder detailed a study ... that shows access to palliative care varies widely among patients suffering from heart failure. Reasons vary from heart failure often being diagnosed late, rendering palliative care irrelevant, to some local hospital systems lacking processes to refer cardiovascular patients to palliative care providers. Feder urges medical facilities to adopt specific policies for referring patients to palliative care to help guide providers’ behavior toward timely referral to palliative experts.
Hazel Dell couple face manslaughter charges in death of relative, 87, in their care
11/18/24 at 03:00 AMHazel 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 analysis
11/16/24 at 03:05 AM[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.
Tech executive's moving goodbye as he enters hospice goes viral: ‘I love that we existed together’
11/15/24 at 02:15 AMTech executive's moving goodbye as he enters hospice goes viral: ‘I love that we existed together’ NBC Today Show; by Alex Portée; 11/13/24 In the final stages of Stage 4 cancer, former Postmates executive James Butts shared a heartfelt message that is resonating with thousands: “Be principled, be an idealist. Most importantly, be a decent human.” In a post shared on his X account Nov. 13, Butts confirmed that he was entering hospice. Butts was a senior vice president of product and design at Postmates for nearly six years and is a co-founder of OrderAhead, according to his LinkedIn page. “I’m entering hospice today. Will probably update (very) little if at all,” Butts announced on X regarding his transition to end-of-life care. ... Butts’s words have received nearly 7.6 million views on the platform and over 98,000 likes within the day of being posted. “I don’t know you, but I am moved by your message,” one user wrote in response to his X post. “Sending you and your loved ones strength.”
Meals on Wheels substantially reduces risk of senior hospitalizations: report
11/14/24 at 03:00 AMMeals 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.
New Health Equity Guide from Center to Advance Palliative Care provides a roadmap to transform care for black patients with serious illness
11/14/24 at 03:00 AMNew Health Equity Guide from Center to Advance Palliative Care provides a roadmap to transform care for black patients with serious illness Cision PRWeb; by Center to Advance Palliative Care; 11/13/24 Having medical concerns dismissed, not being believed when reporting pain, and facing multiple barriers to care are just three of the experiences reported to Center to Advance Palliative Care (CAPC) in a focus group of Black patients with serious illness. In fact, when Black people in the United States are living with a serious illness like cancer, heart failure, or dementia, they experience disproportionately high suffering compared to white patients—often due to poor pain management, low-quality communication from their care teams, and high family caregiver burden. To address these inequities, CAPC has released a new, comprehensive guide, Advancing Equity for Black Patients with Serious Illness, to equip palliative care leaders and health equity change agents with practical tools to implement meaningful change. Drawn from research, examples of health equity initiatives from across the country, and the wisdom of health equity leaders, the guide provides a practical roadmap for transforming care for Black patients, and their families and caregivers.
National Partnership for Healthcare and Hospice Innovation, and American Cancer Society unveil Advanced Cancer Guide to Support Patients & Families Facing Terminal Cancer
11/14/24 at 02:00 AMNational 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.
Startup Guaranteed looks to improve end-of-life care
11/13/24 at 02:00 AMStartup Guaranteed looks to improve end-of-life care Healthcare Brew; by Cassie McGrath; 11/6/24 After losing her father, Jessica McGlory founded a startup to improve end-of-life care. In August 2019, Jessica McGlory got a call that her father had had a double heart attack and was admitted to a hospital in Chicago. As his health declined, McGlory became his caregiver and healthcare proxy. But she said she never got the opportunity to discuss her father’s end-of-life care or his wishes. “I thought it was going to be an opportunity to really focus on my loved one, but instead, [I] had to focus on everything else and really didn’t get the support [I] expected from the hospice,” she told Healthcare Brew. Hospice is palliative care that typically includes counseling, physical care, medicine, and equipment for patients with terminal illnesses. Two years later, despite having no previous experience in healthcare, McGlory decided to take action. In 2022, she launched Guaranteed, a New York-based hybrid end-of-life care startup that works to support people with terminal illness as well as their loved ones and caregivers. ... Guaranteed has raised $10 million to date and is looking to expand into three more states next year, she said.
Educating patients and clinicians on end-of-life care and discussions
11/12/24 at 03:25 AMEducating patients and clinicians on end-of-life care and discussions CancerNetwork - home of the journal Oncology; by Kelley A. Rone, DNP, RN, AGNP-c CancerNetwork® sat down with Kelley A. Rone, DNP, RN, AGNP-c, to discuss the importance of speaking compassionately and ensuring patient awareness when leading end-of-life discussions among those with gastrointestinal (GI) cancers. The discussion also focused on combating burnout in the clinic, using opioids to help manage pain and other symptoms, and educating all members of a multidisciplinary team on initiating end-of-life conversations with their patients. ... As part of leading these end-of-life conversations, Rone emphasized the necessity of addressing the discomfort patients tend to feel when talking about the fact that they may die from their cancer. ... When working with other members of a multidisciplinary care team, Rone illustrated the challenge of having physicians understand that their treatments may fail in younger patients and helping other oncologists become more experienced in speaking about death with patients. ...
Veterans and Alzheimer's: 6 lifestyle tips for staving off the disease
11/12/24 at 02:15 AMVeterans and Alzheimer's: 6 lifestyle tips for staving off the disease NOLA.com, New Orleans, Louisiana; by Dana Territo; 11/11/24 Are veterans more prone to Alzheimer’s disease? According to the U.S. Department of Veterans Affairs, veterans are more likely to develop Alzheimer's disease and other dementias than the general public, and the number of veterans with Alzheimer's is expected to grow. For instance, in 2021, an estimated 457,391 veterans had Alzheimer’s disease, and that number is projected to increase by 8.4% to more than 488,000 by 2033. Age is the biggest risk factor for Alzheimer’s disease as a whole, and veterans are more likely to have health conditions that further increase that risk, including high cholesterol, traumatic brain injury, post-traumatic stress disorder and depression. Additionally, homelessness contributes to that risk as homeless veterans are more likely to have an Alzheimer’s diagnosis than those who are stably housed.
Signs and Symptoms of end-of-life kidney failure
11/11/24 at 03:00 AMSigns and symptoms of end-of-life kidney failure Health; by Lindsay Curtis; 11/8/24 Kidney failure, or end-stage kidney disease (ESKD), occurs when the kidneys lose their ability to filter waste and excess fluids from the blood. As toxins and fluid build up in the body, other health problems can develop, increasing the risk of life-threatening complications. ...
The dozen phrases doctors warned never say to patients, including ‘everything is going to be fine’
11/11/24 at 02:00 AMThe dozen phrases doctors warned never say to patients, including ‘everything is going to be fine’ What's New 2Day; by Alexander; 11/8/24 “Everything is going to be okay.” No doubt you or someone you know has heard those words from a doctor, but doctors are now being warned to stop doing so because it could raise false hope. A new report has identified 12 “never phrases” that doctors should never use with patients with serious illnesses, such as heart failure, cancer and lung disease. They explain that these “isolated words or phrases not only lack benefits but can also cause emotional harm and accentuate power differences.” If a patient is seriously ill, for example, a doctor should never mention the words “withdraw care,” as this implies that the medical team is “giving up.” While “everything will be okay” may seem like a comforting phrase, researchers say this could offer false hope when dealing with a serious illness and a better expression might be “I’m here to support you through this whole process.” [Click on the title's link for the dozen phrases they identify, with alternative language and rationale.]
Most heart failure patients miss out on guideline-recommended palliative care
11/08/24 at 03:00 AMMost heart failure patients miss out on guideline-recommended palliative care Cardiovascular Business; by Dave Fornell; 11/6/24 Over the past decade, the American Heart Association (AHA) and European Society of Cardiology have recommended integrating palliative care into heart failure management. Despite these recommendations, the use of palliative care for heart failure remains low in the United States. Racial and geographic variations in access and use of palliative care are also pronounced, highlighting health disparities. These were the findings of a recent study in the Journal of the American Heart Association. Researchers at Saint Louis University led the study and said only one in eight patients with heart failure in the United States receive palliative care consultations within five years of diagnosis. Their study highlights the alarmingly low uptake of palliative care among adults with heart failure in the U.S., especially compared to patients with cancers that have the same mortality rates. The study also pointed out significant racial and geographic disparities. Black patients were 15% less likely to receive palliative care compared to their white counterparts. They said this disparity is particularly concerning given the higher cardiovascular risk and mortality rates in the Black population.
Study: People with dementia more apt to be admitted to nursing homes with lower star ratings
11/08/24 at 03:00 AMStudy: People with dementia more apt to be admitted to nursing homes with lower star ratings McKnights Long-Term News; by Kristen Fischer; 11/5/24 People living with dementia are less likely to be admitted to high-rated nursing homes compared to people who don’t have the disease, a new study finds. Researchers looked at admission to nursing homes with higher staffing ratings after hospitalization and how individuals fared in the nursing homes based on having or not having dementia. The report was published on Oct. 29 in Alzheimer’s & Dementia. The team evaluated traditional Medicare beneficiaries discharged to nursing homes between 2011 and 2017 along with the relationship between facility staffing star-ratings, short-term readmission and mortality. The number of vacant beds in nursing homes with high ratings was also considered. Data was derived from 5.6 million people who were discharged to nursing homes; 23.1% of the people had dementia.
Early palliative care may curb aggressive end-of-life care
11/07/24 at 03:00 AMEarly palliative care may curb aggressive end-of-life care Medscape; by Marilynn Larkin; 11/6/24 Increasing the uptake of palliative care may decrease the aggressiveness of end-of-life care, an analysis of ovarian cancer decedents suggested. Palliative care initiated earlier than 3 months before death was associated with lower rates of emergency department (ED) visits, hospital admissions, and intensive care unit (ICU) admissions in the last 3 months of life. It was also associated with a lower rate of death in the hospital. “When patients with advanced or incurable cancers experience aggressive end-of-life care, spending their final weeks of life in and out of the ED or admitted to acute care hospital wards or the ICU, where they undergo invasive tests or procedures that may not meaningfully prolong life or address symptoms or suffering, this can be very distressing for patients and their caregivers,” lead author Sarah J. Mah, MD, of McMaster University in Hamilton, Ontario, Canada, told Medscape Medical News.
How four partnerships are advancing cutting-edge cancer care
11/06/24 at 03:00 AMHow four partnerships are advancing cutting-edge cancer care Modern Healthcare; by Caroline Hudson; 11/4/24 Top cancer treatment organizations are leaning into partnerships to take care delivery to the next level. The National Cancer Institute estimates more than 2 million cases of cancer will be diagnosed in 2024. Healthcare leaders say collaboration among technology companies, research institutes, academic medical centers and universities allows them to combine resources and develop cutting-edge treatments more quickly — potentially at a fraction of the cost of standalone projects. ... Here’s what executives say about how four partnerships are advancing cancer care and why collaboration made the most sense for their systems.