Patients' perspectives on dialysis decision-making and end-of-life care
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BACKGROUND: Few studies have explored dialysis patients' perspectives on dialysis decision-making and end-of-life-care (EoLC) preferences. We surveyed a racially diverse cohort of maintenance dialysis patients in the Cleveland, OH, USA, metropolitan area. MATERIALS AND METHODS: In this cross-sectional study, we administered a 41-item questionnaire to 450 adult chronic dialysis patients. Items assessed patients' knowledge of their kidney disease as well as their attitudes toward chronic kidney disease (CKD) treatment issues and EoLC issues. RESULTS: The cohort included 67% Blacks, 27% Caucasians, 2.8% Hispanics, and 2.4% others. The response rate was 94% (423/450). Most patients considered it essential to obtain detailed information about their medical condition (80.6%) and prognosis (78.3%). Nearly 19% of respondents regretted their decision to start dialysis. 41% of patients would prefer treatment(s) aimed at relieving pain rather than prolonging life (30.5%), but a majority would want to be resuscitated (55.3%). Only 8.4% reported having a designated healthcare proxy, and 35.7% reported completing a living will. A significant percentage of patients wished to discuss their quality of life (71%), psychosocial and spiritual concerns (50.4%), and end-of-life issues (38%) with their nephrologist. CONCLUSION: Most dialysis patients wish to have more frequent discussions about their disease, prognosis, and EoLC planning. Findings from this study can inform the design of future interventions.
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Impact of Nursing Home Palliative Care Teams on End-of-Life Outcomes: A Randomized Controlled Trial.

BACKGROUND: Deficits in end-of-life care in nursing homes (NHs) are reported, but the impact of palliative care teams (PCTeams) on resident outcomes remains largely untested. OBJECTIVE: Test the impact of PCTeams on end-of-life outcomes. RESEARCH DESIGN: Multicomponent strategy employing a randomized, 2-arm controlled trial with a difference-in-difference analysis, and a nonrandomized second control group to assess the intervention's placebo effect. SUBJECTS: In all, 25 New York State NHs completed the trial (5830 decedent residents) and 609 NHs were in the nonrandomized group (119,486 decedents). MEASURES: Four risk-adjusted outcome measures: place of death, number of hospitalizations, self-reported moderate-to-severe pain, and depressive symptoms. The Minimum Data Set, vital status files, staff surveys, and in-depth interviews were employed. For each outcome, a difference-in-difference model compared the pre-post intervention periods using logistic and Poisson regressions. RESULTS: Overall, we found no statistically significant effect of the intervention. However, independent analysis of the interview data found that only 6 of the 14 treatment facilities had continuously working PCTeams throughout the study period. Decedents in homes with working teams had significant reductions in the odds of in-hospital death compared to the other treatment [odds ratio (OR), 0.400; P<0.001), control (OR, 0.482; P<0.05), and nonrandomized control NHs (0.581; P<0.01). Decedents in these NHs had reduced rates of depressive symptoms (OR, 0.191; P≤0.01), but not pain or hospitalizations. CONCLUSIONS: The intervention was not equally effective for all outcomes and facilities. As homes vary in their ability to adopt new care practices, and in their capacity to sustain them, reforms to create the environment in which effective palliative care can become broadly implemented are needed.

Palliative care education in U.S. medical schools.

CONTEXT: Medical educators in the U.S.A. perceive the teaching of palliative care competencies as important, medical students experience it as valuable and effective, and demographic and societal forces fuel its necessity. Although it is encouraged by the Association of American Medical Colleges, the only palliative care-related mandate in U.S. medical schools is the Liaison Committee on Medical Education directive that end-of-life (EoL) care be included in medical school curricula, reinforcing the problematic conflation of EoL and palliative care. FINDINGS: A review of US medical school surveys about the teaching of palliative and EoL care reveals varied and uneven approaches, ranging from 2 hours in the classroom on EoL to weeks of palliative care training or hospice-based clinical rotations. IMPLICATIONS: Palliative care competencies are too complex and universally important to be relegated to a minimum of classroom time, random clinical exposures, and the hidden curriculum. RECOMMENDATIONS: Given the reality of overstrained medical school curricula, developmentally appropriate, basic palliative care competencies should be defined and integrated into each year of the medical school curriculum, taking care to circumvent the twin threats of curricular overload and educational abandonment.

Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis.

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision-making capacity. This essay encourages scholars and policy-makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia.

When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States.

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life-sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision-making provisions.

Living with advanced heart failure or COPD: experiences and goals of individuals nearing the end of life.

The last phase of life of patients with end-stage heart failure (HF) or chronic obstructive pulmonary disease (COPD) is marked by high symptom burden and uncertainty about the future. Few enroll in hospice, and their preferences for care remain unknown. The purpose of this qualitative study was to describe the experiences and goals for care of patients with end-stage HF and COPD who were recently discharged from the hospital. Forty semi-structured interviews were completed with 20 participants. Despite conditions considered life-threatening by clinicians, participants believed they still had time. They hoped that their illnesses would remain stable, although specific experiences made them think they might be worsening. All expected that their doctors would tell them when their illnesses became life-threatening.

Palliative care communication: linking patients' prognoses, values, and goals of care.

Prognostic communication is a primary component of goals of care conversations in palliative care (PC) practice. Little is known about these conversations in the natural setting. This study's aim was to describe the processes of prognostic communication in PC goals of care consultations. Using line-by-line qualitative analysis, we examined prognostic conversation in 66 audio-taped PC consultations. We identified five processes by which clinicians link prognoses, values, and goals of care: (1) signposting the crossroads; (2) closing off a goal; (3) clarifying current path; (4) linking paths and patients' values; and (5) choosing among paths. The findings add to our understanding of PC consultation by describing how prognoses link with patients' values and choices in goals of care conversations.

Clinical Guidelines for Voluntarily Stopping Eating and Drinking (VSED).

As the care of patients with serious illness increasingly emphasizes clarifying goals of care, exploring quality of life, and minimizing patients' symptom burden, voluntarily stopping eating and drinking (VSED) has emerged as a topic of increasing interest for patients who face a diminishing quality of life. It is an option for those with serious illness that is legal in every state in the country, but for which there are few published comprehensive guidelines-and none specific to the American medical system-even as public awareness and the number of inquiries regarding this action increase. In addition to the ethical questions raised by the practice and support of VSED, there are also clinical, logistical, institutional, social, religious, spiritual, and administrative considerations for clinicians who are asked to respond to patients' inquiries about VSED and who discuss this option in end-of-life care. With these clinical guidelines, we seek to provide practical recommendations for clinicians who consider providing support to their patients who contemplate and/or undertake this effort to hasten death.

Investigating pain in heart failure patients: the pain assessment, incidence, and nature in heart failure (PAIN-HF) study.

BACKGROUND: Patients with advanced heart failure (HF) have high rates of pain and other symptoms that diminish quality of life. We know little about the characteristics and correlates of pain in patients with advanced HF. METHODS AND RESULTS: We identified pain prevalence, location, character, severity, frequency, and correlates in 347 outpatients with advanced HF enrolled from hospices and clinics. We evaluated the correlation of pain with HF-related quality of life, mortality, symptoms and health problems, and current treatments for pain. Pain at any site was reported by 293 patients (84.4%), and 138 (39.5%) reported pain at more than one site. The most common site of pain was the legs below the knees (32.3% of subjects). Pain interfered with activity for 70% of patients. Pain was "severe" or "very severe" for 28.6% of subjects with chest pain, and for 38.9% of those with other sites of pain. The only medication reported to provide pain relief was opioids, prescribed for 34.1% of subjects (P = .001). The strongest predictors of pain were degenerative joint disease (DJD) (odds ratio [OR] 14.95, 95% confidence interval [CI] 3.9-56.0; P < .001), other arthritis (OR 2.8, 95% CI 1.20-6.62; P = .017), shortness of breath (OR 3.27, 95% CI 1.47-7.28; P = .004), and angina pectoris (OR 3.38, 95% CI 1.30-8.81; P = .013). CONCLUSIONS: Pain occurred at multiple sites in patients with advanced HF. Pain correlated with DJD or other arthritis, shortness of breath, and angina. Only opioid analgesics provided relief of pain. Future research should evaluate the etiology of and interventions to manage pain in patients with HF.

Generalist versus Specialist Palliative Medicine.

The issue of generalist versus specialist palliative care is on the minds of healthcare leaders everywhere. We are amid changing demographics of physicians. The industrialization of medicine is well underway in the US and around the developing world. Is it important to identify patients who benefit the most from specialist palliative care, given that it is currently a limited resource? Should we step out of standard practice and redesign palliative care using principles of population management? The COVID pandemic rapidly introduced virtual palliative care consults. Is it a better way to promote wide access to specialty palliative care? Looking forward, should we promote ways to advance primary palliative care and reserve specialty palliative care to patients who will benefit most from this level of care? These questions, and others, are considered in this transcribed discussion between leading physicians in the field.

A new sperm-specific Na+/H+ exchanger required for sperm motility and fertility.

It has long been speculated that intracellular pH is a critical regulator of both invertebrate and vertebrate sperm motility, and sodium-hydrogen exchange has been suggested as a mediator of such pH(i) regulation in various instances. Two sodium-hydrogen exchangers (NHE1 and NHE5) are expressed in spermatozoa. However, elimination of the NHE1 gene fails to cause infertility, suggesting that normal sperm function is maintained in NHE1-null animals. Here, we used a functionally unbiased signal peptide trap screen to identify a novel sperm-specific NHE. The NHE contains 14 predicted transmembrane segments, including a potential voltage sensor and a consensus cyclic nucleotide-binding motif. Testis histology, sperm numbers and morphology were normal, but NHE-null males were completely infertile with severely diminished sperm motility. The addition of ammonium chloride, which elevates intracellular pH, partially rescued the motility and fertility defects. Surprisingly, cyclic AMP analogues almost completely rescued the motility and infertility phenotypes. The existence of this new sperm NHE provides an attractive contraceptive target, given its cell-specific expression and absolute requirement for fertility.