Literature Review

Innovations in serious illness care with Bree Owens Teleios Collaborative Network (TCN); podcast by Chris Comeaux; 2/19/25 In this episode of TCNtalks, host Chris Comeaux interviews Bree Owens, a licensed clinical social worker and co-founder of The Holding Group.  They discuss Bree’s journey in the healthcare field, particularly in Palliative Care. Bree shares insights on learning the importance of meaningful conversations with patients and their families about care options, which led her to the unique model of The Holding Group.  Her organization has created space, hence the name The Holding Group, for a patient-centered approach, helping patients and their families find the right care at the right place and at the right time.  Bree emphasizes the significance of informed consent and the role of social workers in facilitating these discussions to enhance patient outcomes and satisfaction.

Addressing overtreatment in end-of-life cancer care Medscape; by David J. Kerr, CBE, MD, DSc; 2/19/25 ... What do we mean by overtreatment? This means that many patients who are approaching the end of life receive treatments, like directed anticancer therapies, that are unlikely to provide clinically meaningful benefits and may do more harm than good. This is an expression that I use often in the clinic when I'm explaining to patients that we have reached the end of the road in active interventions, such as chemotherapeutic drugs, that will do more harm than good. It doesn't stop us from doing our very best to look after patients. We focus on improving the quality of life and maintaining that for as long as we can, while continuing to care and look after the patients. ... Overtreatment may even, one would argue, accelerate death when you consider those 1% or 2% mortality rates that can be associated with some treatments that we offer. ...

The talk nurses don't talk about enough: Death and dying Nurse.org - Nurse Converse podcast; by "Courtney" DNP, APRN, AGNP-C; 2/11/25 ... Nursing and medical curricula extensively cover subjects such as pathophysiology, pharmacology, and anatomy, yet they often fail to provide structured training on effective communication regarding death and dying. In the podcast, the hosts recall their own educational experiences, noting that they were not equipped with the tools or frameworks necessary to engage in these sensitive discussions. One telling example from a medical course on difficult conversations revealed that when students were asked if they had received any training on the subject, not a single hand was raised. 

It’s inoperable cancer. Should AI make call about what happens next? The Harvard Gazette - Harvard University; by Alvin Powell; 2/10/25AI is already being used in clinics to help analyze imaging data, such as X-rays and scans. But the recent arrival of sophisticated large-language AI models on the scene is forcing consideration of broadening the use of the technology into other areas of patient care. In this edited conversation with the Gazette, Rebecca Weintraub Brendel, director of Harvard Medical School’s Center for Bioethics, looks at end-of-life options and the importance of remembering that just because we can, doesn’t always mean we should. When we talk about artificial intelligence and end-of-life decision-making, what are the important questions at play? ...

Advice on navigating complex caregiving Philadelphia Corporation for Aging; by Jay Nachman; 2/3/25 The biggest challenge for someone taking care of a parent or loved one is “accepting your loved one for who they are now. Not who you knew them to be,” said Dr. Kiplee Bell, an internal medicine physician who has created a practice focused on caregiving. ... It’s not uncommon, according to Bell, for minority community members to live in multi-generational households. Additionally, in some homes, grandparents are raising grandchildren. Then there is the flipside, where young children are helping to take care of their older family members. And when English is not a native tongue, language barriers can preclude an adequate understanding of how to navigate the social service and health care systems. ...

Medical professionals’ perceptions of and experiences with terminally ill Orthodox Jewish patientsAmerican Journal of Hospice and Palliative Medicine; Moshe C. Ornstein, MD, MA; David Harris, MD; 1/25Orthodox Jewish patients with terminal illnesses have unique goals and desires, often driven by halakha (Jewish law and ethics) and cultural norms. Compared to the general population, Orthodox Jewish patients with terminal illnesses are more likely to request aggressive measures at end-of-life and are less likely to have completed advanced directives and health care power of attorney documentation. They also do not always have a rabbinic authority involved in decision-making. Health care professionals highlighted strong religious and community support as positive elements of caring for this population and recommend that medical teams establish early and direct communication with rabbinic authorities for those patients for whom a rabbi’s involvement is desired.

Disproportionate use of aid in dying among people with ALS: Why ALS aid-in-dying requests are common while ALS is rareJournal of Aid-in-Dying Medicine; Carolyn Rennels, MD; Steven Z. Pantilat, MD FAAHPM, MHM; Ambereen K. Mehta, MD, MPH, FAAHPM; Allison Kestenbaum, MA, MPA, BCC-PCHAC, ACPE; Kelsey Noble, DO; Jessica Besbris, MD; Ali Mendelson, MD; Kara Bischoff, MD; 12/24People with amyotrophic lateral sclerosis (ALS) disproportionately use aid in dying. We explore aspects of the ALS experience that may help explain the higher rates of aid-in-dying requests in this disease relative to others. In particular, the desire to maintain control is prominent in the face of a relentlessly progressive disease that results in substantial disability. We also describe how the requirement for self-administration of aid-in-dying medications impacts people with ALS.

US dementia cases projected to double within 40 years Medscape Medical News; by Pauline Anderson; 1/13/25 The number of US adults who will develop dementia each year is projected to increase from approximately 514,000 in 2020 to about 1 million in 2060, new research shows. In addition, the lifetime risk of developing dementia after age 55 is estimated at 42%. The research showed that the relative growth in dementia cases is particularly pronounced for Black adults. These new findings researchers say, “highlight the urgent need for policies that enhance healthy aging, with a focus on health equity.”

How poor communication is killing patients and burning out doctors Medpage Today's KevinMD.com; by Pamela Buchanan; 1/14/25 This week alone, I had two particularly heart-wrenching encounters [as an Emergency Room physician]: A 65-year-old man with metastatic lung cancer, convinced his shortness of breath was just pneumonia. When I explained the progression of his disease, he was shocked. No one had told him that his cancer was likely incurable. A 97-year-old woman brought in for “failure to thrive.” She was frail, pale, and not eating—classic signs of the final stages of metastatic cancer. When I suggested hospice care, she seemed blindsided, as if this reality was completely new to her. Both cases highlight a troubling trend: Patients often come to the ER not just for care, but for clarity. They don’t understand their diagnosis, prognosis, or treatment plan. ...

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.

Current challenges in neurocritical care: A narrative reviewWorld Neurosurgery; Safa Kaleem, William T. Harris II, Stephanie Oh, Judy H. Ch'ang; 1/25Neurocritical care as a field aims to treat patients who are neurologically critically ill due to a variety of pathologies. As a recently developed subspecialty, the field faces challenges, several of which are outlined in this review ... [including confusion around] brain death testing or the diagnosis of brain death itself ... Given these difficult scenarios encountered in the neuro-ICU, conversations with patients’ decision-makers are often done with the assistance of palliative care services ... the most common reasons for palliative care consultation in the neuro-ICU were discussing prognosis, eliciting patient and family values, understanding medical options, and identifying conflict. Collaboration with hospital chaplains and palliative care services can be helpful, but cultural humility also needs to be a priority for neurocritical care providers to be able to navigate difficult conversations.

[Australia] Why mental health clinicians are not engaging in advance care planning with older people with schizophrenia and other psychotic illnessesPsychology Research and Behavior Management; Anne P F Wand, Aspasia Karageorge, Yucheng Zeng, Roisin Browne, Megan B Sands, Daniella Kanareck, Vasi Naganathan, Anne Meller, Carolyn M Smith, Carmelle Peisah; 12/24These clinician-identified attitudes, experiences, and barriers to engagement in ACP [advance care planning] with older people with psychotic illnesses highlight avenues of potential intervention to facilitate ACP in this cohort. Given the complexity of issues, clinicians need education and training in ACP combined with clear processes and policies to support practice. Clinician insights should be combined with the perspectives of older consumers with psychotic illnesses and their families to inform implementation of ACP.