Literature Review

Guidelines for evaluating, diagnosing, and disclosing dementia published by Alzheimer’s Association Practical Neurology; 1/14/25 The Diagnostic Evaluation, Testing, Counseling, and Disclosure Clinical Practice Guideline (DETeCD-ADRD CPG) Workgroup, convened and funded by the Alzheimer’s Association, has developed new recommendations for clinicians to use when evaluating patients with possible Alzheimer disease (AD) or AD and related dementias (ADRD). An executive summary of the recommendations for use in primary care and other practice settings was published in Alzheimer’s & Dementia, along with a companion article summarizing specific guidance for specialists. The Workgroup included representatives from  primary, specialty, subspecialty, long-term, and palliative care disciplines as well as the fields of health economics and bioethics.  Editor's note: Click for open access to the Alzheimer's Association clinical practice guideline ..., executive summary of recommendations for primary care. 

Home … where we all want to be The Journal; Dr. Sarah Phillips, Medical Director Hospice of the Panhandle; 1/12/25 Two days before Christmas, I arrived at the home of a patient who had been recently admitted to Hospice services. ... [Story of the patient being on a ventilator in a hospital.] This courageous and self-determined woman expressed the desire to be free from pain, suffering, and the complications and progression of her disease. Knowing that the ventilator was life-sustaining and essentially breathing for her, she made the decision to stop it. To ensure her comfort during discontinuation of the ventilator, the hospice team was present before, during, and after the procedure. Medications were used to ease shortness of breath, pain, and anxiety. ... “It’s a Wonderful Life” was playing on the TV, the Christmas tree was lit. I looked over and see the daughter wiping away her mother’s tears. Each reassured the other that everything will be OK and that they are at peace with this decision. As the medications took effect, the patient drifted off to sleep. The ventilator was stopped. Next, something happens that I will never forget. The daughter leans in and whispers to the patient, “Mom, the ventilator is off now, you are back in total control. This was profound to me on many levels. It certainly spoke to the power and importance of autonomy, the ability to make independent decisions that are aligned with one’s values and goals. ... Despite working in end-of-life care for over a decade, I still have these moments of being overwhelmed by the human spirit.

Hospice centers: Balancing comfort and controversy Crossroads Today, Victoria, TX; by Amaya Norman; 1/9/25 Hospice centers play a critical role in providing care for patients with terminal illnesses, focusing on comfort, dignity, and peace during life's most challenging moments. These centers are designed to support both patients and their families, but public opinions about their services often vary. ... While many see hospice centers as an essential support system offering much-needed relief and care, others express concerns about the quality of services or the emotional toll they can bring to families. These differing perspectives have sparked ongoing discussions about the role and perception of hospice care in society.

End-of-life care can be more aggressive for cancer patients with defibrillators Medical Xpress; by UT Southwestern Medical Center; 1/8/25 Patients with advanced cancer who also had cardiac defibrillators were more likely than those without these implants to receive aggressive end-of-life care, a team led by UT Southwestern Medical Center researchers found in a new study. The findings, published in Cancer, could help physicians guide patients in this growing population toward care that better matches their goals. ... The findings showed that about 6% of patients with advanced cancer also had [implantable cardioverter defibrillators] ICDs. However, significantly more of the ICD patients received aggressive care during the last month of their lives compared to those without these devices.

Hospice workers share the foods that bring patients comfort till the end: Plus, they reveal how families can support their loved ones with scents, small bites and shared memories HuffPost; by Julie Kendrick; 12/30/24... We all live, we all die and we all enjoy food along the way. The memory and meaning of food, along with the bliss of being able to savor a cherished flavor, are still present in our lives, even as we head toward a last meal, a soothing sip of water or a final bit of sustenance. “Food often plays an emotional role in the last stages of life,” said Dr. Kurt Merkelz, the chief medical officer at Compassus, a home-based care company. “Some patients may reminisce about favorite meals or foods that connect them to fond memories and loved ones. There are instances where patients crave a specific dish that reminds them of their family or heritage, even if they can’t eat much.” ... People often ask for things like mashed potatoes, ice cream and chicken soup, according to Gail Inderwies, the founder and president of KeystoneCare, a hospice and home health provider in Pennsylvania. ... Sometimes, those comforts are part of a culinary heritage.

Behavioral symptoms and treatment challenges for patients living with dementia: Hospice clinician and caregiver perspectivesJournal of the American Geriatrics Society; Karolina Sadowska BA; Molly Turnwald BA; Thomas O'Neil MD; Donovan T. Maust MD, MS; Lauren B. Gerlach DO, MS; 12/24Dementia affects one in three older adults over age 85 and individuals with dementia constitute the fastest growing population of patients entering hospice care. While cognitive impairment is the hallmark of dementia, behavioral symptoms are reported in nearly all patients with advanced dementia, contributing to both the complexity of end-of-life care and caregiver burden. Behavioral symptoms of dementia are highly prevalent among the US hospice population and are often managed with psychotropic medications prescribed off-label. There are limited treatment guidelines in this population, so the appropriate risk and benefit balance may be highly individual. This qualitative study can help to inform the decision-making of hospice clinicians and caregivers regarding anticipated behavioral changes and limitations of treatment options in dementia end-of-life care. 

4 Benefits of palliative care at home: Personalized and coordinated medical care at home increases quality of life Psychology Today; by Bob Uslander, MD; 12/20/24 ... More than six million people in the U.S. could benefit from palliative care, and, according to the Center to Advance Palliative Care, thousands received it at home last year. Research shows that being cared for at home enhances quality of life because it is usually consistent with one’s life goals. ... 4 Benefits Palliative Care at Home Provides: ...

Mobile app–facilitated collaborative palliative care intervention for critically ill older adults-A randomized clinical trialJAMA Internal Medicine; Christopher E. Cox, MD, MPH; Deepshikha C. Ashana, MD, MBA, MS; Katelyn Dempsey, MPH; Maren K. Olsen, PhD; Alice Parish, MSPH; David Casarett, MD; Kimberly S. Johnson, MD; Krista L. Haines, DO; Colleen Naglee, MD; Jason N. Katz, MD, MHS; Mashael Al-Hegelan, MD, MBA; Isaretta L. Riley, MD, MPH; Sharron L. Docherty, RN, PNP, PhD; 12/24An automated electronic health record–integrated, mobile application–based communication platform that displayed family-reported needs over 7 days, coached ICU attending physicians on addressing needs, and prompted palliative care consultation if needs were not reduced within 3 study days. In this randomized clinical trial, a collaborative, person-centered, ICU-based palliative care intervention had no effect on palliative care needs or psychological distress compared to usual care despite a higher frequency of palliative care consultations and family meetings among intervention participants.

Mom, 26, dies days after choosing to enter hospice following 13 years of living with kidney failure (exclusive) People; by Zoey Lyttle; 12/18/24 Though she left behind a 4-year-old daughter, Sara Long told PEOPLE her feelings about death were "more certain" than they'd ever been when she started end-of-life care. “I think a lot of people spend a lot of time thinking about what it means to have a good life. And don't get me wrong, I did that too,” Sara Long, 26, told PEOPLE over the phone just shy of a week before she died at the hospice facility into which she had just recently moved. ... Long said she’s spent “the last two or three years” deliberating about her idea of a “good death.” She decided that it wasn’t just about how she would experience these last expected few weeks of her life in hospice. What Long really wanted was to be surrounded by her most precious loved ones — including her husband Justin, 32, and their 4-year-old daughter Riley Jean — but she didn't want them to watch her die while intubated and attached to hospital equipment as she was half of her life. “I just feel like if I pushed it any harder, then I was going to get to a place where it was going to be outside of my control,” said the mom of one. “I was going to wind up dying in a hospital alone, afraid, full of tubes, scared. My daughter wouldn't be able to be part of the process, and it would just be really lonely, and that's really not the goal.” Detached from the familiar yet foreign medical equipment, Long told PEOPLE she was freed from fear knowing she would only survive another couple of weeks in hospice. (She died with a week less than anticipated.) Editor's note: This another follow-up post to this profound young woman's story that we post on 

[Canada] First reading: Hundreds seeking death due to loneliness — inside Canada’s new MAID figures National Post, Toronto, Ontario, Canada; by Tristin Hopper; 12/13/24 [Health Canada has] released the official figures on medical assistance in dying (MAID) deaths in 2023. The Fifth Annual Report on Medical Assistance in Dying in Canada, published on Wednesday, reveals that one in every 20 Canadian deaths is now due to assisted suicide. There were 15,343 total MAID deaths in 2023, the median age ... was 77.7 years, and 622 people received MAID for a non-terminal illness. ... The growth rate [in Canada] remains higher than anywhere else. ... Half of non-terminally ill people applying for MAID report being lonely. When applying for MAID, patients are asked to detail all the types of suffering they’re experiencing in order to determine if their condition qualifies as something “grievous and irremediable” — and thus eligible for death. Health Canada’s report reveals that 47.1 per cent of non-terminally ill Canadians who applied for MAID reported “isolation or loneliness” as one of the causes of their suffering. This was significantly higher than the number of terminally ill applicants who said the same (21.1 per cent).

Weekly US Map: Influenza summary updateCDC - U.S. Centers for Disease Control and Prevention; ongoing, retrieved from the internet 12/16/24A Weekly Influenza Surveillance Report Prepared by the Influenza Division Editor's note: Bookmark this page to your web browser to monitor flu activity in your service areas through these more vulnerable winter months. Click on the map's "State" button for macro data at the state level. Click on the map's "CBSA" to drill down to counties.

Watch: ‘Going It Alone’ — A conversation about growing old in AmericaKFF Health News; by Judith Graham; 12/11/24 KFF Health News’ “Navigating Aging” columnist, Judith Graham, spent six months this year talking to older adults who live alone by choice or by circumstance — most commonly, a spouse’s death. They shared their hopes and fears, challenges, and strategies for aging solo. Graham moderated a live event on Dec. 11, hosted by KFF Health News and The John A. Hartford Foundation. She invited five seniors ranging in age from 71 to 102 and from across the country — from Seattle; Chicago; Asheville, North Carolina; New York City; and rural Maine — to talk candidly about the ways they are thriving at this stage of life.

The politics of loss: What grief reveals Psychology Today; by Daniela E. Miranda, PhD; 12/10/24 It has been a bit over two years since my 27-year-old brother unexpectedly passed away, exactly two weeks before my 64-year-old father, quickly and expectedly, died from cancer. What followed was a series of “secondary losses”. For my family, secondary losses included the shifting dynamics of caregiving and the emotional labor required to rebuild a daily life after multiple losses, while permanently uprooting to a different country. This article is not about my grief but about how the experience of loss can illuminate the fractures and possibilities within our systems of care. ... Key points: