Search

Bereaved family members sometimes experience distress due to stressful life events. However, the effects of this distress on depression and grief remain unclear.To clarify the degree of distress due to post-bereavement stressful life events, its associated factors, especially social isolation, and its effects on major depressive disorder (MDD) and complicated grief (CG) risks among bereaved family members of patients with cancer.This cross-sectional questionnaire survey was conducted in 2018 as part of the J-HOPE4 study. We recruited 1740 bereaved family members of patients with cancer who died from July to August of 2018. We assessed distress due to post-bereavement stressful life events with the Bereavement Secondary Stressor Scale, social isolation with the Lubben Social Network Scale Short-Form, and the MDD and CG risk with the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively.Among the 913 (52.5%) respondents, 88%, 57%, 46%, 28%, and 19% experienced distress due to incidental tasks, daily life difficulties, financial problems, problems with other people, and deterioration of family relationships, respectively. More distress was associated with higher risks of MDD (odds ratio [OR] = 2.5, p0.01) and CG (OR = 2.5, p0.01). Social isolation and specific backgrounds were associated with more distress in response to stressful life events.Most family members experienced distress due to stressful life events, which were risk factors for MDD and CG. Assessing risk factors for maladaptation to post-bereavement life changes and enhancing readiness to adapt to them is important.

The COVID-19 pandemic placed the issue of resource utilization front and center. Our comprehensive cancer center developed a Goals of Care Rapid Response Team (GOC RRT) to optimize resource utilization balanced with goal-concordant patient care.Primary study objective was to evaluate feasibility of the GOC RRT by describing the frequency of consultations that occurred from those requested. Secondary objectives included adherence to consultation processes in terms of core team member participation and preliminary efficacy in limiting care escalation.We conducted a retrospective chart review of patients referred to GOC RRT (3/23/2020-9/30/2020). Analysis was descriptive. Categorical variables were compared with Fisher's exact or Chi-Square tests and continuous variables with Mann-Whitney U tests.Eighty-nine patients were referred. Eighty-five percent (76/89) underwent a total of 95 consultations. Median (range) patient age was 61 (49, 69) years, 54% (48/89) male, 19% (17/89) Hispanic, 48% (43/89) White, 73% (65/89) married/partnered and 66% (59/89) Christian. Hematologic malignancies and solid tumors were evenly balanced (53% [47/89] vs 47% [42/89, P=0.199]). Most patients (82%, 73/89) had metastatic disease or relapsed leukemia. Seven percent (6/89) had confirmed COVID-19. Sixty-nine percent (61/89) died during the index hospitalization. There was no statistically significant difference in demographic or clinical characteristics among groups (no consultation, 1 consultation,1 consultation). Core team members were present at 64% (61/95) of consultations. Care limitation occurred in 74% (56/76) of patients.GOC RRT consultations were feasible and associated with care limitation. Adherence to core team participation was fair.

International audience; CONTEXT: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose several clinical and ethical challenges for healthcare teams and families. OBJECTIVES: Our study aimed to describe CDS requests and practices of patients receiving specialized pediatric palliative care in France since its legalization in 2016. METHODS: We conducted a nationwide multicentric, descriptive, retrospective study using a self-report questionnaire completed by all Pediatric Palliative Care (PPC) Teams that were involved in a CDS case between January 2017 and December 2019. RESULTS: Six PPC teams had cared for six patients that had requested CDS, predominantly male adolescents/young adults diagnosed with a solid tumour. The refractory symptoms were diverse (pain, bleeding, sensory loss) and always coupled with psycho-existential suffering. Each request was analyzed in multidisciplinary collegial meetings. Parental consent was always obtained regardless of age. Sedation typically required the use of multiple drugs including Midazolam (n=5 cases), Chlorpromazine (n=3), Ketamine (n=2) and Propofol (n=2). Despite close monitoring, achieving a satisfactory level of deep sedation was challenging and most patients unexpectedly awoke during CDS. Death occurred between 27 and 96 hours after induction. CONCLUSION: Managing patient-requested CDS in pediatrics is challenging due to its rarity, multi-factorial refractory symptoms and drug tolerance despite polytherapy. Few recommendations exist to guide CDS practice for pediatricians. Further studies investigating pediatric CDS practices across various cultural and legal settings, refractory symptom management and specific pharmacology are warranted.

OBJECTIVE. To describe a physician (MD) and registered nurse (RN) led palliative care consultation team embedded in the medical intensive care unit (MICU). To compare patterns of palliative care consultation, and rates of goals of care documentation and in-ICU mortality before and after the implementation of the embedded team. CONTEXT. By embedding MD/RN palliative care team in the MICU, more critically ill patients with unmet palliative care needs could receive an earlier palliative care consultation. METHODS. In a retrospective cohort study of patients admitted to the MICU who received a palliative care consultation, we compared sociodemographic and clinical characteristics of patients who received a referral-based consultation (01/01/2019–06/30/2019) and those who received an embedded MD/RN consult (09/01/2019–02/28/2020). Using the electronic health record data, we compared palliative care consultation characteristics, rates of documentation of medical decision-maker and goals of care, and percentage of in-ICU mortality between the referral group and the embedded group. RESULTS. In a six-month period, 169 MICU patients received an embedded consultation, as compared to 52 MICU patients who received a referral-based consultation. As compared to the referral-based period, those patients who received an embedded consult were seen significantly earlier in hospitalization (median number of days from hospital admission to consult: 10 days [pre] vs. 3 days [embedded], P

Physicians who specialize in pulmonary arterial hypertension (PAH) care for patients facing a serious, life-limiting illness. Palliative care is underutilized in patients with PAH, and little is known about how best to provide palliative care to this patient population.Using a qualitative approach, assess physicians' perspectives on barriers and facilitators to the use of palliative care in PAH.Participants were board-certified pulmonologists and cardiologists recruited from the Pulmonary Hypertension Association's list of physician specialists and academic center websites. We performed one-on-one semi-structured interviews that were recorded, transcribed, and analyzed using thematic analysis.Twelve physicians participated in the study, with a median age of 48.5 years and 20.5 years of clinical experience caring for patients with PAH. We identified the following themes and associated barriers and facilitators to effective implementation of palliative care for patients with PAH: a tailored approach to the individual patient; a PAH-specialist-led culture of care; effective collaboration with palliative care clinicians; and limitations imposed by health systems.PAH physicians are open to palliative care for their patients and are willing to partner with palliative care clinicians to implement this effectively and in the right setting. Areas for targeted improvement in enhancing palliative care for patients with PAH exist, especially enhancing collaboration between PAH physicians and palliative care specialists and navigating barriers in health systems.

The Latinx population faced higher rates of infection and severe illness during the COVID-19 pandemic, resulting in an increased need for palliative care services.We describe the creation and impact of a formal palliative care initiative developed for seriously ill, Spanish-speaking patients during the COVID-19 pandemic at a tertiary care academic medical center.Patients were enrolled in the Spanish Palliative Care Initiative during a two-month period starting in April 2020. Selected patients were longitudinally followed by a rotating team of Spanish-speaking palliative care clinicians. Following the intervention, a retrospective chart review was conducted to evaluate the impact of the program.We enrolled 22 patients. The most frequent palliative care task completed during the initial visit was information giving (77%) and during follow-up visits were goals of care discussion (59%) and coping support (59%). Fifteen patients (68%) had a change in code status and 4 patients (18%) were discharged to hospice.The creation of a focused clinical program targeting a historically marginalized population offered opportunity for early palliative care intervention in clinical care for Spanish-speaking patients. This underscores the need for Spanish-language concordant palliative care to improve serious illness care, and end-of-life care, by providing continuity of care, spiritual care, and ICU team support.

Dyspnea is a common and highly distressing symptom in patients with advanced illnesses. Many patients continue to experience chronic dyspnea despite optimal management of underlying disease(s) and various non-pharmacologic interventions, necessitating the consideration of pharmacologic therapies for palliation of dyspnea. One commonly asked question by clinicians is whether benzodiazepines have a role in the palliation of dyspnea. In this "Controversies in Palliative Care" article, three groups of thought leaders independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. All three groups suggest that benzodiazepines alone do not confer a benefit for dyspnea in advanced illnesses based on existing data. They also expressed concerns about the potential adverse effects such as delirium and drowsiness and recommended against benzodiazepines as first line pharmacologic therapy. Some groups suggest that benzodiazepines may be used in highly selected patients with severe anxiety associated with dyspnea. Some investigators may also consider the adjunctive use of benzodiazepines in patients with severe dyspnea despite opioids, particularly if life expectancy is limited. Benzodiazepines also have a role in palliative sedation for refractory dyspnea in the last days of life. More research is needed to confirm the benefit of benzodiazepines in these populations.

Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared decision making can be a complex task that often requires flexibility to respond to the clinical circumstances at hand, as well as contextualization within the family culture. In this paper, we present the case of an infant with a severe congenital brain malformation who was born in an American hospital to a Rohingya-speaking, Burmese family whose care preferences seemed to oscillate between comfort-focused and life-prolonging without clear acknowledgement of the consequences of shifting between treatment plans. Discussion of this case helps to illustrate the cultural factors, ethical challenges, and systems-level issues that can arise for medical teams in seeking to promote patient-centered care that respects family values while also honoring the principle of nonmaleficience.

ContextPalliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood.ObjectivesTo determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer.MethodsIn this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0-48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0-21; HADS-D, range 0-21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0-189).ResultsWe enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07-0.29, P=0.90), depression (adjusted mean difference -0.22, 95% CI -0.97-0.55, P=0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25-1.43, P=0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95-17.77, P=0.030).ConclusionCaregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.

Many adolescents and young adults (AYAs; 15-39 years) with cancer receive high intensity (HI) care at the end of life (EOL). Palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized versus generalist PC (SPC, GPC) is unknown.(1) To evaluate whether SPC had an impact on the intensity of EOL care received by AYAs with cancer; (2) to determine which subpopulations are at highest risk for reduced access to SPC.A decedent cohort of AYAs with cancer who died between 2000-2017 in Ontario, Canada was identified using registry and population-based data. The primary composite measure of HI-EOL care included any of: intravenous chemotherapy14 days from death; more than one ED visit, more than one hospitalization or any ICU admission30 days from death. Physician's billing codes were used to define SPC and GPC involvement.Of 7,122 AYA decedents, 2,140 (30%) received SPC and 943 (13%) received GPC. AYAs who died in earlier years, those with hematologic malignancies, males and rural AYAs were least likely to receive SPC. No PC involvement was associated with higher odds of receiving HI-EOL care (odds ratio (OR) 1.5; p0.0001). However, SPC was associated with the lowest risk of HI-EOL care (OR SPC versus GPC 0.8; p=0.007) and decreased odds of ICU admission (OR 0.7; p=0.006).SPC involvement was associated with the lowest risk of HI-EOL care in AYAs with cancer. However, access to SPC remains a challenge.

Shortness of breath is a distressing symptom that occurs in 10% to 70% of oncology patients. Despite this broad range in its occurrence, little is known about inter-individual variability in shortness of breath and associated risk factors among patients receiving chemotherapy.Identify subgroups of patients with distinct shortness of breath profiles; evaluate for differences among these subgroups in demographic and clinical characteristics; evaluate for differences among symptom dimensions of shortness of breath, and evaluate for differences in quality of life outcomes.Outpatients (n=1338) completed questionnaires six times over two chemotherapy cycles. Occurrence of shortness of breath was assessed using the Memorial Symptom Assessment Scale. Latent class analysis was used to identify subgroups of patients with distinct shortness of breath profiles.Four distinct shortness of breath profiles were identified (None [70.5%], Decreasing [8.2%], Increasing [7.8%], High [13.5%]). Risk factors for membership in High class included: history of smoking, self-reported diagnosis of lung disease, having lung cancer, and receipt of a higher number of cancer treatments. Compared to the None class, High class reported poorer physical, psychological, and social functioning.Almost 14% of patients with heterogeneous types of cancer receiving chemotherapy had persistently high occurrence rates of shortness of breath for almost two months. In addition, compared to the Decreasing and Increasing classes, the High class' episodes of shortness of breath were more frequent and more severe. Clinicians need to assess all oncology patients for shortness of breath and provide targeted interventions.

Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved.To develop a set of recommendations to advance PC research in SA.Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%.60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant.Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

Family caregivers are essential to home hospice care for patients with advanced cancer, including reporting patient symptoms to hospice providers for follow-up. Hospice caregiving can also impact personal well-being.1) Assess home hospice caregivers' use of prospective, longitudinal audio diaries tracking patient and caregiver wellbeing; 2) Explore how patient-focused vs. caregiver-focused diary prompts perform; 3) Examine the prevalence of interactive voice response (IVR)-tracked symptoms and whether diaries revealed additional symptoms.Caregivers (N=102) were asked to report patient and caregiver symptoms via daily IVR calls and could record optional diaries responding to patient-focused or caregiver-focused prompts. Diaries were transcribed, classified by presence/absence of new information, and compared by prompt type. Content coding for IVR-tracked symptoms and inductive coding for additional symptoms were summarized by frequency counts and exemplary quotes.Sixty-nine percent of participants (n=70) recorded diaries, and of these 72.86% (n=51) recorded ≥ one new-information diary. The median recording length was 53.00 seconds (SD=53.36). Participants responding to the caregiver-focused prompt (n=33) recorded more diaries than those in the patient-focused group (n=37; U=437.500, p=.04. Most prevalent IVR-tracked symptoms were patient fatigue/weakness (26.54% of symptoms mentioned) and pain (23.08%), and caregiver anxiety/nervousness (47.51%) and fatigue (22.10%). The most prevalent additional symptoms were patient increasing sleepiness/sleeping (26.32%) and breathing difficulties (24.32%), and negative caregiver emotions (e.g., guilt, resentment, anger; 29.17%).Prospective audio diaries offer a viable avenue for communicating symptoms and support needs. Future research will focus on leveraging longitudinal data for developing focused and tailored caregiver support interventions.

The perception of being a burden to others is a significant concern for people with life-threatening illness. It is unclear what underpins the concept of "self-perceived burden".To appraise and integrate primary evidence underpinning the concept of self-perceived burden (SPB) with respect to their informal caregivers among adult patients with life-threatening illness.This is a systematic review and a thematic synthesis of qualitative primary data. MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science were searched in September 2021, supplemented by hand searching of textbooks and web search engines, peer-review journals, and contact with experts. Qualitative studies were included if they provided primary data of adult patients' (with life-limiting illness) SPB toward their informal caregivers. Studies were appraised using the Critical Appraisal Skills Programme checklist.Nine studies were included, reporting on 219 patients who mostly had advanced life-threatening illness and needed physical assistance for daily activities. SPB is a highly subjective perception contrasting self and/or informal caregivers in the past, present, and future. Patients develop SPB feeling uncertain about caregivers' perceptions and increasing future burden. SPB interacts with other factors of surrounding complex balances (such as care needs, reality, and identity) which would change over time, and patients' reactions to SPB at the sacrifice of their wishes may conversely increase the total suffering.SPB is not a static perception but a fluctuating and complex 'process' based on uncertainty. More diverse understandings and following interventions to achieve a better balance of care should be sought.

The debate on assisted dying and its components, euthanasia and physician-assisted suicide has evolved with the emergence of the right to dignity and the wish to hasten death (WTHD). Whilst shaped by local legal and sociocultural considerations, appreciation of how patients, healthcare professionals and lawmakers relate notions of dignity to self-concepts of personhood and the desire for assisted dying will better inform and direct support of patients.Guided by the Systematic Evidence Based Approach, a systematic scoping review (SSR in SEBA) on perspectives of dignity, WTHD and personhood featured in PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, Scopus databases and four key Palliative Care journals was conducted. The review hinged on the following questions: "what is the relationship between dignity and the wish to hasten death (WTHD) in the assisted dying debate?", "how is dignity conceptualised by patients with WTHD?" and "what are prevailing perspectives on the role of assisted dying in maintaining a dying patient's dignity?"6947 abstracts were identified, 663 full text articles reviewed, and 88 articles included. The four domains identified include 1) concepts of dignity through the lens of the Ring Theory of Personhood (RToP) including their various definitions and descriptions; 2) the relationship between dignity, WTHD and assisted dying with loss of dignity and autonomy foregrounded; 3) stakeholder perspectives for and against assisted dying including those of patient, healthcare provider and lawmaker; and 4) other dignity-conserving measures as alternatives to assisted dying.Concepts of dignity constantly evolve throughout the patient's end of life journey. Understanding when and how these concepts of personhood change and trigger the fear of a loss of dignity or intractable suffering could direct timely, individualised and appropriate person-centred dignity conserving measures. We believe an RToP-based tool could fulfil this role and further study into the design of this tool is planned.

Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.The objective was to determine the vaccination coverage, discuss the relevance of vaccinations and provide vaccination recommendations in pediatric palliative care.Vaccination data were compared in a multicenter cross-sectional study. Expert interviews were conducted to evaluate symptom burden. The vaccination status of patients treated by six German pediatric specialized home palliative care teams was recorded from January 2019 to December 2019. The data were compared to the national immunization schedule and the vaccination rate of a representative German pediatric cohort. Onset of missed vaccination was compared to the date of diagnosis of the life-limiting condition. A risk score was calculated to evaluate the relevance of each individual vaccinations.Vaccination rates of Tdpa, haemophilus influenzae type B, poliomyelitis, hepatitis B, pneumococcal disease, meningococcal diseases type C, and MMR were lower compared to healthy controls. There were no significant differences in varicella. In most cases the discontinuation of recommended immunizations occurred after diagnosis of the palliative condition. Influenza had the highest risk score and was the most frequent vaccine preventable disease in retrospective data. This paper includes a pragmatic proposal for the management of vaccination in this vulnerable population.Children and adolescents with life-limiting conditions are at increased risk of vaccine preventable diseases. Individual vaccination counselling is recommended.

Children with severe neurological impairment and polypharmacy are exposed to anticholinergic (AC) medications that may have anticholinergic side effects, but this is understudied. Anticholinergic Cognitive Burden (ACB) scores measure total anticholinergic burden for a medication regimen, and scores ≥3 have been associated with increased morbidity and mortality in adults.We assessed the relationship between ACB scores and parent-reported anticholinergic symptoms in children.Cross-sectional study of patients one to 18 years-old with ICD-defined severe neurological impairment and polypharmacy. At routine clinical visits, total ACB scores were computed for all medications. Parent-reported AC symptoms (constipation, drowsiness, difficulty concentrating, dry mouth, or urinary problems) were assessed. Multivariable logistic regression was used to test the association between total ACB scores ≥3 for scheduled medications and the presence of AC symptoms, adjusted for age and recent acute healthcare utilization.Among 123 unique patients, 87% were prescribed AC medications. Common AC medication classes included: systemic antihistamines (64%), anxiolytics (53%), antidepressants (30%), H2 blockers (22%), and muscle relaxants (20%). Total ACB scores ≥3 were observed in 44% for scheduled medications and in 63% of patients for scheduled plus PRN medications. Total ACB scores ≥3 were significantly associated with an increased odds of ≥1 anticholinergic symptoms for scheduled medications (OR: 3.1; 95% CI: 1.4, 6.7) and for scheduled plus PRN medications (OR: 2.9; 95% CI: 1.3, 6.4).If replicated in larger populations, the association between elevated total ACB scores and anticholinergic side effects in children should prompt clinicians to consider deprescribing potentially unneeded anticholinergic medications.

People on oral anti-cancer agents must self-manage their symptoms with less interaction with oncology providers compared to infusion treatments. Symptoms and physical function are key patient-reported outcomes (PROs) and may lead to unscheduled health services uses (urgent care and emergency department [ED] visits, hospitalizations), which in turn lead to increased health care costs.To evaluate the prediction of unscheduled health services uses using age, sex, and comorbidity, then determine the extent to which PRO data (symptoms and functioning) improve that prediction.This post-hoc exploratory analysis was based on data from the control group of a trial of medication adherence reminder and symptom self-management intervention for people starting a new oral anti-cancer agent (n = 117 analyzed). Severity and interference with daily life for 18 symptoms, physical function, and depressive symptoms were assessed at intake (oral agent start), and four, eight, and 12 weeks later. Unscheduled health services use during three four-week periods after the start of oral agents was analyzed using generalized mixed effects models in relation to age, sex, comorbidity, and PROs at the beginning of each time period.The summed severity index of 18 symptoms and physical function were significant predictors of hospitalizations in the four weeks following PRO assessment. The addition of PROs improved areas under the receiver operating characteristic curves to be over .70 in most time periods.Monitoring of PROs has the potential of reducing unscheduled health services use if supportive care interventions are deployed based on their levels.