Literature Review

Aligning pill burden and palliative care needs in late-stage CVD: AHA TCTMD - Cardiovascular Research Foundation; by L.A. McKeown; 7/2/24 The first scientific statement from the American Heart Association (AHA) that focuses specifically on pharmacotherapy considerations in the palliative management of patients with CVD [cardiovascular diesease] urges a patient-centered, compassionate approach to de-escalating and deprescribing. ... In addition to shedding light on how and when to start deprescribing and de-escalating common cardiovascular drugs, the statement discusses palliative drugs for pain, shortness of breath, and appetite in the context of CVD, which [Katherine E.] Di Palo [PharmD (Montefoiore Medical Center, NY)] said the committee identified as a gap in knowledge given that much of the evidence for these drugs comes from patients with serious illnesses like cancer. ... Important Takeaways: Di Palo and colleagues note that palliative care complements cardiovascular care in several important ways, including reducing physical symptom burden, managing emotional and spiritual distress, providing sufficient support for caregivers, and helping patients choose treatment in line with their goals for care. Editor's Note: Click here for the American Heart Association's statement, which we posted on 7/2/24. 

Palliative care nurses see us in our final hours — these are the life lessons they've learnt ABC News; by Iskhandar Razak; 6/29/24 Anne Myers was once confused and shaken by death. After more than a decade as a nurse, including in hospital ICUs, her mother died. "I'd seen a lot of deaths in my nursing life, but it was the closest human to me that had died," she said. "It kind of sent me down a 'oh my god, I don't know what's happening to me', this grief I'm experiencing." Soon afterwards, she became a palliative care nurse. "I ended up just going down the path of 'what is death, what is death and dying all about?'" she recalled. More than 15 years later, here's what she and other palliative care nurses have discovered on how to die well and live well.

Empowering ‘deeply undervalued’ caregivers would improve ‘lifeline for older adults’ McKnights Senior Living; by Kimberly Bonvissuto; 6/28/24 Direct care workers and family caregivers remain “deeply undervalued” and often overlooked despite calls for investment in the care economy, according to the authors of a new report. “These caregivers provide a lifeline for older adults, people with disabilities, and people living with chronic conditions,” PHI and the National Alliance for Caregiving said in an issue brief released Wednesday. “Empowering them in their roles will help to ensure high quality, responsive care to meet the needs and preferences of millions of Americans now and in the future.” The organizations called on providers, Congress, the Department of Labor, the Centers for Medicare & Medicaid Services, the federal Health Resources and Services Administration, states, managed care plans and advocates to invest in the “essential partnership” between direct care workers and family caregivers. The new brief includes insights from a variety of stakeholders ...  The result is a list of recommendations that prioritize improvements to direct care jobs.Editor's Note: Our sponsor, Composing Life Out of Loss, equips hospice and palliative care organizations with caregiver education and support video libraries to strengthen relationships between the direct care professional and the family caregiver, with timely information for the entire family. Contents are written to CMS CoPs, CAHPS, and contemporary grief research; English and Spanish.

Factors affecting palliative care collaboration with pain medicine specialists Clinical Pain Advisor; by James Maitlall, MD; 6/27/24 Structured collaboration between physicians working in palliative care (PC) and pain medicine (PM) may increase PC physician referral of seriously ill patients to PM specialists and potentially optimize their care, according to study results published in the Journal of Pain and Symptom Management. ... In a survey study, a multicenter team of investigators explored attitudes and beliefs among US PC physicians regarding PM specialists, as well as factors potentially impacting collaboration between physicians in these 2 areas of practice. ... The American Academy of Hospice and Palliative Medicine (AAHPM) approved the survey for distribution to 1000 of its physician members, who were selected at random. ... The investigators concluded, “Although we found that PC physicians have highly positive attitudes about the value of PM specialists, referral rates remain low, even for IDDS implantation, which has perhaps the largest body of evidence for patients with complex cancer-associated pain.”  

AMA Advocacy 2024 efforts American Medical Association; by AMA; Updated June 2024, 6/27/24 There are far too many everyday practice challenges interfering with patient care. That’s why the American Medical Association is advocating to keep physicians at the head of the health care team, reform the Medicare physician payment system, relieve the burdens of overused prior authorizations and so much more. [Key advocacy efforts include:]

Chronic loneliness can raise stroke risk in older adults, findings show McKnights Long-Term Care News; by Kristen Fischer; 6/24/24 A new study links loneliness to stroke risk, showing that those who are regularly lonesome have a 56% higher risk for stroke than those who are more socially connected. Situational loneliness wasn’t linked to a higher risk for stroke, which indicates that the stroke risk stems from chronic loneliness. Investigators led by a team from Harvard T.H. Chan School of Public Health published their report Monday in eClinicalMedicine. Research has already linked loneliness to an increased risk for cardiovascular disease. The new report is one of the first to evaluate the association between loneliness and stroke risk.

Palliative care physician: ‘Healing is possible’ even when cure is not Healio, Chicago, IL; by Jennifer Byrne; 6/26/24During her fellowship as a palliative care physician, Sunita Puri, MD, met a patient who taught her that healing is possible even when cure is not. Alice, a 35-year-old woman, had acute myeloid leukemia. ... Nobody wanted to say it out loud, but Alice was dying. “She was only a couple years older than me. She’d lived in San Francisco, a few streets away from where I lived in my residency,” Puri, program director of the hospice and palliative medicine fellowship program at UMass Chan School of Medicine. ... “She had a vibrancy that I had always hoped to embody, but she was intubated, wide awake, on dialysis and starting to suffer from ascending paralysis.” ... During rounds one day, Puri told her attending that she was at a loss about how to help Alice and didn’t feel she was doing anything meaningful for her. “My attending said, ‘What if just being at her bedside is achieving something meaningful?’” Puri recalled. “I’d always understood healing and cure to be different, but this was when I really felt it.” ... “What if healing is choosing to understand that there’s going to be suffering that we can’t alleviate — and sometimes that’s our own — but the most important thing to bring to that is presence?” she said. [Click on the article's title to continue reading.] Editor's Note: Though not directly related to this article, read "Today's Encouragement" at the end of today's newsletter.

Dementia decisions: Making tough choices about hospice, palliative care Being Patient; by Katy Koop; 6/25/24 In the later stages of Alzheimer's, palliative and hospice care can be necessary. But how do you find a facility designed for dementia patients? ... Dr. Maribeth Gallagher, director of Arizona’s Hospice of the Valley dementia program, joins Being Patient video reporter Mark Niu to discuss how to make these difficult decisions and what makes a palliative or hospice care program “dementia-capable.” Gallagher’s work directing the Hospice of the Valley’s dementia program has received national and international awards for its innovative approaches. Her focus on dementia care was initially inspired by her personal experiences as a family caregiver, sharing the journey with her loved one from diagnosis to death. [Click on the title's link for the full conversation, in both audio and text.]

The Opaque Industry Secretly Inflating Prices for Prescription DrugsThe New York Times; by Rebecca Robbins and Reed Abelson; 6/21/24Pharmacy benefit managers are driving up drug costs for millions of people, employers and the government. This is the first article in a series about how pharmacy benefit managers prioritize their interests, often at the expense of patients, employers and taxpayers. Americans are paying too much for prescription drugs. It is a common, longstanding complaint. And the culprits seem obvious: Drug companies. Insurers. A dysfunctional federal government.Publisher's Note: Pharmacy costs are second only to staffing for hospices. Dr. Drew Mihalyo and I presented on the complexities of prescription drug pricing at the 2017 Louisiana~Mississippi Hospice & Palliative Care Organization conference. This article, and others like them, will likely both educate and infuriate readers. The more things change, the more they stay the same...

Unity launches Guide that enhances quality of life for dementia patients and their caregivers The Chamber - Manitowoc County, De Pere, Wisconsin; Press Release; 6/20/24 In honor of The Longest Day Of The Year which is celebrated on June 20th to raise awareness and outshine the darkness of Alzheimer's disease, Unity, in partnership with National Partnership for Healthcare and Hospice Innovation (NPHI), announces the release of a new dementia care resources guide that will improve quality of life for dementia and Alzheimer’s patients, reduce hospitalizations, and ease the burden for families and caregivers. ... The new guide represents the best standards of care for mid-, advanced-, to end-stage dementia and was put together with the collective input of 100+ not-for-profit hospice, palliative care, and advanced illness care organizations. [Click on the title's link for more information, and to download the free guide.]

Cancer therapy at end of life may not boost survival Cure; by Brielle Benyon; 6/17/24 Patients with advanced solid cancers who received systemic therapy toward the end of life typically did not live any longer than patients who did not receive treatment, according to research published in JAMA Oncology. Because cancer treatments can damper quality of life, it is crucial that patients and their loved ones discuss goals of care and prognosis with their oncology team, two experts emphasized. “I think once we progress to advanced and metastatic cancer when cure is no longer feasible, it’s important to consider goals-of-care conversations,” said study author Maureen Canavan, associate research scientist at Yale School of Medicine.

When your parents die: Becoming an adult orphan The Montecito Journal; by Deann Zampelli; 6/18/24 Shortly after I got married, my 64-year-old mother lost her battle with breast cancer. Seven years later my father joined her. The loss isn’t any less painful just because you are a grown-up. ... Many don’t realize that grief isn’t linear. We don’t go through a neat little phase, checking off each stage as we complete it. The famous (and somewhat debunked) five stages of grief introduced by Elisabeth Kübler-Ross in the 1960s (Denial, Anger, Bargaining, Depression, Acceptance) were from a study she did on the emotional states of patients who were dying. It was their stages she was referencing, not ours. ... I came to a frightening realization. ...  It suddenly dawned on me that my siblings and I were next in line to kick it. [Click on the title's link to continue reading.]Editor's Note: While serving in your hospice leadership roles, you experience the ongoing aging, changes and likely even deaths of your own family members, friends, and mentors. Do you, your hospice communications, and/or your grief services rely on the outdated "Stages of Grief" model? These "stages" opened the door in the 1960's for talking about death and dying, but became overpopularizd for surviving and healing after the loss. These have been replaced with extensive bereavement/loss/grief research, clinical best practices, and more. For expert information, resources, and bereavement professionals, examine www.adec.org,  the Association for Death Education and Counseling. 

4 percent of those aged 65+ have dementia diagnoses: reportMcKnight's Senior Living; by Kimberly Bonvissuto; 6/14/24Four percent of US adults aged 65 or more years have a dementia diagnosis, with rates of dementia increasing with age, according to newly released data. Data from the 2022 National Health Interview Survey, or NHIS, revealed that the rate of dementia diagnoses ranged from 1.7% for adults aged 65 to 74 years to 13.1% in those 85 and older, according to the National Health Statistics Reports issue released Thursday by the Centers for Disease Control and Prevention. ... Among all residential care communities, 42% of residents have diagnoses of Alzhiemer’s disease or other dementias, according to the report. By comparison, 31% had heart disease, and 29% had depression.