Approaches to deprescribing cardiovascular medications in patients receiving palliative care: a scoping review

Role of Child Life Specialists in Pediatric Palliative Care

Background: Continuous monitoring of patients with terminal cancer using nonwearable devices may offer advantages. Objectives: This study aimed to determine the association between nighttime activity scores, measured using Nemuri SCAN (NSCAN), and physical symptom intensity, measured using the Integrated Palliative Care Outcome Scale staff version items, in the final days of life. Design: Prospective observational study. Setting/Subjects: This study included 1111 patients with advanced cancer admitted to a 27-bed palliative care unit in Japan. Measurements: Nighttime activity scores measured using NSCAN and symptom intensity (pain, nausea, fatigue, shortness of breath, and the most severe of these) were recorded. The associations between symptom intensity and activity scores in the final days of life (one to three days) were analyzed using the Jonckheere-Terpstra test. The associations in the final weeks of life (14, 21, and 28 days before death) were also examined. Results: Activity scores increased with worsening of the most severe symptom over the final days and weeks of life (p < 0.001). They were significantly associated with the intensity of pain, nausea, fatigue, and shortness of breath one day before death (p < 0.005). Three days and in the final weeks before death, activity scores were significantly associated with the intensity of all symptoms, except for shortness of breath (p < 0.05). Conclusion: The association between symptom intensity and activity scores suggests that NSCAN activity scores could serve as a potential supplementary assessment tool to flag increases in symptom-related distress, prompting further clinical assessment in the final days of life.

Nursing home residents with advanced dementia have limited life expectancies yet are commonly subjected to burdensome interventions at the very end of life. Whether sex-specific differences in the receipt of these interventions exist and what levels of physical restraints and antibiotics are used in this terminal setting are unknown. To evaluate the population-based frequency, factors, and sex differences in burdensome interventions and antibiotic therapy among nursing home residents with advanced dementia. This population-based cohort study from Ontario, Canada, used linked administrative databases held at ICES, including the Continuing Care Resident Reporting System Long-Term Care database, which contains data from the Resident Assessment Instrument Minimum Data Set, version 2.0. Nursing home residents (n = 27 243) with advanced dementia who died between June 1, 2010, and March 31, 2015, at 66 years or older were included in the analysis. Initial statistical analysis was completed in May 2017, and analytical revisions were conducted from November 2018 to January 2019. Sex of the nursing home resident. Burdensome interventions (transitions of care, invasive procedures, and physical restraints) and antibiotic therapy in the last 30 days of life. The final cohort included 27 243 nursing home residents with advanced dementia (19 363 [71.1%] women) who died between June 1, 2010, and March 31, 2015, at the median (interquartile range) age of 88 (83-92) years. In the last 30 days of life, burdensome interventions were common, especially among men: 5940 (21.8%) residents were hospitalized (3661 women [18.9%] vs 2279 men [28.9%]; P < .001), 2433 (8.9%) had an emergency department visit (1579 women [8.2%] vs 854 men [10.8%]; P < .001), and 3701 (13.6%) died in an acute care facility (2276 women [11.8%] vs 1425 men [18.1%]; P < .001). Invasive procedures were also common; 2673 residents (9.8%) were attended for life-threatening critical care (1672 women [8.6%] vs 1001 men [12.7%]; P < .001), and 210 (0.8%) received mechanical ventilation (113 women [0.6%] vs 97 men [1.2%]; P < .001). Among the 9844 residents (36.1%) who had a Resident Assessment Instrument Minimum Data Set, version 2.0, completed in the last 30 days of life, 2842 (28.9%) were physically restrained (2002 women [28.3%] vs 840 men [30.4%]; P = .005). More than one-third (9873 [36.2%]) of all residents received an antibiotic (6599 women [34.1%] vs 3264 men [41.4%]; P < .001). In multivariable models, men were more likely to have a transition of care (adjusted odds ratio, 1.41; 95% CI, 1.33-1.49; P < .001) and receive antibiotics (adjusted odds ratio, 1.33; 95% CI, 1.26-1.41; P < .001). Only 3309 residents (12.1%; 2382 women [12.3%] vs 927 men [11.8%]) saw a palliative care physician in the year before death, but those who did experienced greater than 50% lower odds of an end-of-life transition of care (adjusted odds ratio, 0.48; 95% CI, 0.43-0.54); P < .001) and greater than 25% lower odds of receiving antibiotics (adjusted odds ratio, 0.74; 95% CI, 0.68-0.81; P < .001). In this study, many nursing home residents with advanced dementia, especially men, received burdensome interventions and antibiotics in their final days of life. These findings appear to emphasize the need for sex-specific analysis in dementia research as well as the expansion of palliative care and end-of-life antimicrobial stewardship in nursing homes.

Public Awareness and Perceptions of Palliative and Comfort Care

National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, Executive Summary

Despite the widely acknowledged benefits of early referral to palliative care (e.g. Teno and Ward, 2004), there is considerable evidence that many patients who could benefit from palliative care services are not referred in a timely manner and miss the opportunity to benefit from the health-promoting aspects of the service as they face the end of life. Referral to, and uptake of, palliative care services remains typically low (Casarett et al., 2005), and patients are often referred to services only in the final days of life. Thus many patients may make this important transition with just hours or days to live, and for some that transition might never occur. The barriers to palliative care referral have been widely reported. There isconsiderable fear and stigma associated with palliative care services, most likely due to their association with death and dying. This fear and stigma is evident in patients contemplating referral, their families, the general public, and often also the health professionals who are the gatekeepers to palliative care (McLoughlin and McGilloway, 2011). Arguably, therefore, it is crucial that health professionals are offered an opportunity to critically reflect on their assumptions around palliative care, and to take time to explore their feelings toward death and dying, in a safe, facilitated environment. As part of a doctoral study, the authors developed a one-day course for health professionals entitled ‘Working with death, dying and palliative care’ (McLoughlin and McGilloway, 2011) utilising the Fook and Gardner (2007) model of critical reflection. The model was used as a basis to guide participants’ learning during the workshop, whilst participants’ thoughts and personal constructs around death, dying and palliative care were also examined utilising the repertory grid technique (Kelly, 1955).

NICE Opioids in Palliative Care (Clinical Guideline 140) - A Guideline Summary.

Advanced heart failure (HF) is associated with high morbidity and mortality rates, compromising the functionality and quality of life of patients and their families. Hospitalizations exacerbate disease severity, particularly when inotropic therapy is required. Palliative care (PC) supports the management of suffering caused by severe illnesses but is infrequently utilized in cardiology. To evaluate the integration of PC in the management of decompensated HF, identifying opportunities to enhance patient care. This unicentric, retrospective, observational study was conducted between February 2015 and May 2018 with HF patients undergoing inotropic therapy. The study analyzed referrals for PC, the approach adopted by the PC-consultation team, and patient outcomes, including an analysis of 5-year survival rates. Statistical significance level: 5%. A total of 492 patients were included (66.9% male, median age 63 years, IQR 52-72). PC referral occurred in 23% of cases, with a median of 8.0 days (IQR 4.0-20) before death. Only 14% of intensive care patients were referred, and no transplant patients received PC evaluations. Patients assessed by the PC team were more involved in decision-making and received more opioid prescriptions for symptom management than those managed exclusively by cardiologists (p<0.01). In-hospital and 5-year mortality rates were 42% and 80%, respectively. Patients experiencing decompensated HF demonstrate high mortality rates and are rarely referred to PC, often in the final days of life, limiting the potential benefits of this approach. Enhanced medical education in PC and the development of strategies to promote its integration may improve patient outcomes.

Chronic conditions like heart disease and dementia have surpassed cancer as leading causes of death in aging populations. Non-cancer patients, despite similar palliative care needs, often face delayed initiation or limited access. This study investigated the proximity of palliative care initiation to death among older adults with different diagnoses and influencing factors. This cross-sectional study used Taiwan's National Health Insurance and Multiple Causes of Death databases (2010-2020), including individuals aged ≥65 who received specialist palliative care before death. Multinomial logistic regression analysed the association of cancer status and year of death with the proximity of palliative care initiation to death. Among 177 403 decedents, 82.41% had cancer and 17.59% non-cancer diagnoses. While median proximity was similar (cancer: 29days; non-cancer: 28days), non-cancer decedents had significantly higher adjusted odds ratios (aORs) for late palliative care initiation, particularly ≤3days (aOR: 1.45, 95% CI: 1.36-1.54) and 4-7days before death (aOR: 1.34, 95% CI: 1.27-1.41). Over time, the proportion of decedents who initiated palliative care at least 181days before death increased. Those who died in 2020 were significantly more likely to receive earlier palliative care than those who died in 2010 (aOR: 7.64, 95% CI: 5.78-10.10). Despite a trend towards earlier initiation for both groups, non-cancer patients in Taiwan are more likely to have palliative care initiated in the final days of life. Targeted policies are needed to ensure equitable, needs-based palliative care across diagnoses for improved end-of-life outcomes for older adults.

Previous studies have demonstrated positive impacts of advance care planning (ACP) on end-of-life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision-making in their final days of life. We analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision-making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient-engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life-prolonging treatments, limiting or withholding certain treatments, and receipt of comfort-oriented care). All analyses accounted for the complex survey design of HRS. Among 870 adults (weighted N= 2,812,380) with dementia who died in 2000-2014 and required surrogate decision-making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life-prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2pp; P-for-trend=0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort-oriented care did not change. Our findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life-prolonging treatments are still common among PLWD who require surrogate decision-making, a population who might benefit greatly from early ACP.

ABSTRACTIntroduction: A variety of medications are used for symptom control in palliative care, such as morphine, midazolam and haloperidol. The pharmacokinetics of these drugs may be altered in these patients as a result of physiological changes that occur at the end stage of life.Areas covered: This review gives an overview of how the pharmacokinetics in terminally ill patients may differ from the average population and discusses the effect of terminal illness on each of the four pharmacokinetic processes absorption, distribution, metabolism, and elimination. Specific considerations are also given for three commonly prescribed drugs in palliative care: morphine, midazolam and haloperidol).Expert opinion: The pharmacokinetics of drugs in terminally ill patients can be complex and limited evidence exists on guided drug use in this population. To improve the quality of life of these patients, more knowledge and more pharmacokinetic/pharmacodynamics studies in terminally ill patients are needed to develop individualised dosing guidelines. Until then knowledge of pharmacokinetics and the physiological changes that occur in the final days of life can provide a base for dosing adjustments that will improve the quality of life of terminally ill patients. As the interaction of drugs with the physiology of dying is complex, pharmacological treatment is probably best assessed in a multi-disciplinary setting and the advice of a pharmacist, or clinical pharmacologist, is highly recommended.

Background: There is widespread agreement that the families of hospice patients need to be prepared for the final days of life, yet current practices preparing families are not well described. Examining the gap between family needs and current practice will inform the development of effective preparatory interventions. Aim: The purpose of the study was to describe how hospice clinicians prepare family for the final days of life, including (1) the content of the preparatory information, (2) strategies and timing of preparation, and whether the preparation is tailored, and (3) who prepares families. Design: Conventional content analysis guided this study. Individual interviews using semi-structured questions were conducted. Setting/participants: In all, 19 hospice clinicians who provided care in the home setting from two hospice agencies in the United States participated. Results: Preparatory messages included information on signs of impending death, symptoms, implications of the symptoms, what to expect next, and instructions on what to do. Commonly used strategies included listening, engendering trust, repetition, collaboration with other disciplines, and demonstrations. Staff tailored content and delivery of messages on patient, family, and hospice factors. Preparation usually occurred over time. All hospice staff provided preparatory information, but there are some differences by discipline. Conclusions: Most content previous identified as necessary for preparedness is part of the current preparation. The knowledge of the current practice in preparing families can be used to develop systematic means of assessing the factors related to timing and tailoring, which may assist in developing preparatory messages that are effective and timely.

Background: Phase 1 cancer clinical trials offer potential disease modifying treatments for patients with advanced cancer who have not responded to standard treatments. These patients also experience palliative care needs that should be addressed. However, misunderstandings may arise between the goals of experimental treatments and the goals of palliative care, especially when the latter focuses on quality of life. Aim: This study aimed to map the existing literature on the provision and integration of palliative care within phase 1 clinical trials, identifying knowledge gaps and informing future research. Design: A systematic scoping review. Data sources: Studies published from 2003 to 2023 were identified through searches in PubMed, Web of Science, Scopus, CINAHL, PsycINFO and Google Scholar, focussing on people living with advanced cancer enrolled in phase 1 clinical trials. Results: Fifty studies were included from 452 screened. Key results revealed patients’ limited life expectancy, high symptom burden, distress and unmet spiritual needs. Notably, patients were reluctant to seek prognostic information or engage in end-of-life discussions, complicating advance care planning. End-of-life care involved frequent unscheduled hospital admissions, hospital deaths and late hospice-care referrals. Caregivers experienced significant distress, while healthcare professionals faced barriers to integrating palliative care. Palliative care interventions varied widely in approaches, settings and outcomes. Conclusion: This review highlights the unique needs of patients and caregivers in Phase 1 Cancer Clinical Trials and the complexities of integrating palliative care. Future research should focus on integrating specialised palliative care into oncology trials and developing standardised guidelines for clinical trial units.

IntroductionConnecting patients with healthcare providers by videoconferencing claims to extend the reach of palliative care by overcoming barriers of geographical distance and limited time, energy and financial resources. Research in...

Providing care to actively dying patients presents unique challenges for the clinician. Patients in their final days require careful symptom management. Families need support and coaching as death approaches. Care does not end with the death of the patient but continues through death pronouncement, family notification of the death, discussion of autopsy, and immediate bereavement support. Skills in these and related areas are discussed in the context of one man's death, as illuminated by comments made after death by his daughter and his physician. This case also highlights the often differing perspectives of families and clinicians as they work to deal with a patient's death. A goal of mastering the palliative skills necessary to competently care for an actively dying patient is to enable a patient to die peacefully and relatively free of discomfort. Achieving such competency should also help to relieve clinician stress attendant to caring for dying patients.