BACKGROUND: Palliative care has been developed in recent years in many sub-Saharan countries in Africa due to activities of African Association for Palliative Care. Palliative care units have been established also in most hospitals in Tanzania. Yet very little is known about their functions. Long-term studies about the sustainability of palliative care have not been carried out.
METHODS: The attitudes of 101 members of hospital staff and persons in charge of palliative care services of Ilembula District Designated Hospital (IDDH), Tanzania, were assessed using a modified and prevalidated questionnaire annually in 2014 to 2017. The inquiries were executed on randomly allocated days. Also, the patient and economy registries were analyzed. Additional qualitative data were obtained in personal interviews and during observational visits twice a year at the IDDH.
RESULTS: Ilembula District Designated Hospital has a true multiprofessional palliative care team, which provides services in the hospital, in the villages, and at homes. The activities are based on careful 5-year planning and budgeting. Up to 17 villages have been included in the services. Ninety-five percent of the patients were HIV infected. Short-acting morphine oral solution was the only available strong opioid. The hospital staff evaluated palliative care as good or excellent; 50% of the staff would need more support in the end-of-life care.
CONCLUSIONS: A sustainable palliative care service can be built in a Tanzanian rural hospital if an advanced planning and budgeting are made. In Tanzania, the biggest group of palliative care patients are still HIV-infected individuals. There is a lack of opioids in the country.
RATIONALE: Admissions to intensive care units (ICUs) are common during terminal hospitalizations, but little is known about how ICU care affects the end-of-life experience for patients dying in hospitals and their families.
OBJECTIVES: We measured the association between ICU care during terminal hospitalization and family ratings of end-of-life care for patients who died in 106 Veterans Affairs hospitals from 2010 to 2016.
METHODS: Patients were divided into four categories: no ICU care, ICU-only care, mixed care (died outside ICU), and mixed care (died in ICU). Multivariable linear probability models were adjusted for patient and hospital characteristics. Patients receiving mixed care were also analyzed based on percentage of time in ICU.
MEASUREMENTS AND MAIN RESULTS: Of 57,550 decedents, 28,062 (48.8%) had a survey completed by a family member or close contact. In adjusted models, ICU-only care was associated with more frequent optimal ratings than no ICU care, including overall excellent care (56.6% vs. 48.1%, p<0.001), care consistent with preferences (78.7% vs. 72.4%, p<0.001), and having pain controlled (51.3% vs. 46.7%, p<0.001). Among patients with mixed care, increasing ICU time was associated with higher ratings on these same measures (all p<0.001 for comparisons of those spending >75% time in ICU vs. <= 25% time).
CONCLUSIONS: Among hospital decedents, ICU care was associated with higher family ratings of quality of end-of-life care than ward care. Reducing ICU use among hospital decedents may not improve end-of-life quality, and efforts to understand how ICU care improves end-of-life quality could help provide better care outside ICUs.
OBJECTIVE: This study captured the end-of-life care experiences across various settings from bereaved caregivers of individuals who died in residential hospice.
METHODS: A retrospective, observational design using the CaregiverVoice survey with bereaved caregivers of patients in 22 hospices in Ontario, Canada. The survey assessed various dimensions of the patient's care experiences across multiple care settings in the last 3 months of life.
RESULTS: A total of 1153 caregivers responded to the survey (44% response rate). In addition to hospice care, caregivers reported that 74% of patients received home care, 61% had a hospitalization, 42% received care at a cancer center, and 10% lived in a nursing home. Most caregivers (84%-89%) rated the addressing of each support domain (relief of physical pain, relief of other symptoms, spiritual support, and emotional support) by hospice as either "excellent" or "very good." These proportions were less favorable for home care (40%-47%), cancer center (46%-54%), and hospital (37%-48%). Significantly, better experiences were reported for the last week of life where hospice was considered the main setting of care, opposed to other settings ( P < .0001 across domains). Overall, across settings pain management tended to be the highest-rated domain and spiritual support the lowest.
CONCLUSION: This is one of few quantitative examinations of the care experience of patients who accessed multiple care settings in the last months of life and died in a specialized setting such as residential hospice. These findings emphasize the importance of replicating the hospice approach in institutional and home settings, including greater attention to emotional and spiritual dimensions of care.
OBJECTIVE: To examine whether end-of-life care quality is superior in Magnet hospitals, a recognition designating nursing excellence.
BACKGROUND: Considerable research shows better patient outcomes in hospitals with excellent nurse work environments, but end-of-life care quality has not been studied in Magnet hospitals.
METHODS: An analysis of cross-sectional data was completed using surveys of nurses and hospitals. Multivariate logistic regression models were used to determine the association between Magnet hospitals and measures of end-of-life care quality.
RESULTS: Overall, nurses report poor quality of end-of-life care in US hospitals. In Magnet hospitals, nurses were significantly less likely to give their hospital an unfavorable rating on end-of-life care.
CONCLUSIONS: Hospital Magnet status may signal better quality in end-of-life care. Administrators looking to improve the quality of end-of-life care may consider improving aspects of nursing that distinguish Magnet hospitals.
Importance: The use of intensive care at the end of life continues to be common. Although the provision of palliative care has been advocated as a way to mitigate the use of high-intensity care, it is unknown whether implementation of hospital-based palliative care services is associated with reduced use of intensive care at the end of life.
Objective: To determine whether implementation of hospital-based palliative care services is associated with decreased intensive care unit (ICU) use during terminal hospitalizations.
Design, Setting, and Participants: This cohort study included 51 hospitals in New York State that either did or did not implement a palliative care program between 2008 and 2014. Hospitals that consistently had a palliative care program during the study period were excluded. Participants were adult patients who died during hospitalization. Data analysis was performed between January 2018 and July 2019.
Exposure: Implementation of a palliative care program.
Main Outcomes and Measures: The primary outcome was ICU use. A difference-in-differences analysis was performed using multilevel regression to assess the association between implementing a palliative care program and ICU use during terminal hospitalizations while adjusting for patient and hospital characteristics and time trends.
Results: During the study period, 73 370 patients (mean [SD] age, 76.5 [14.1] years; 38 467 [52.4%] women) died during hospitalization, of whom 37 628 (51.3%) received care in hospitals that implemented palliative care services and 35 742 (48.7%) received care in a hospital without palliative care implementation. Patients who received care in hospitals after implementation of palliative care services were less likely to receive intensive care than patients admitted to the same hospitals before implementation (49.3% vs 52.8%; difference 3.5%; 95% CI, 2.5%-4.5%; P < .001). Compared with hospitals that never had a palliative care program, the implementation of palliative care was associated with a 10% reduction in ICU use during terminal hospitalizations (adjusted relative risk, 0.90; 95% CI, 0.85-0.95; P < .001).
onclusions and Relevance: The implementation of hospital-based palliative care services in New York State was associated with a modest reduction in ICU use during terminal hospitalizations.
Background: Care transitions from the hospital to hospice are a difficult time, and gaps during this transitions could cause poor care experiences and outcomes. However, little is known about what gaps exist in the hospital-to-hospice transition.
Objectives: to understand the process of hospital-to-hospice transition and identify common gaps in the transition that result in unsafe or poor patient and family caregiver experiences.
Design: We conducted a qualitative descriptive study using semistructured interviews with health care workers who are directly involved in hospital-to-hospice transitions. Participants were asked to describe the common practice of discharging patients to hospice or admitting patients from a hospital, and share their observations about hospital-to-hospice transition gaps.
Setting/Subjects: Fifteen health care workers from three hospitals and three hospice programs in Portland, Oregon.
Measurements: All interviews were audio recorded and analyzed using qualitative descriptive methods to describe current practices and identify gaps in hospital-to-hospice transitions.
Results: Three areas of gaps in hospital-to-hospice transitions were identified: (1) low literacy about hospice care; (2) changes in medications; and (3) hand-off information related to daily care. Specific concerns included hospital providers giving inaccurate descriptions of hospice; discharge orders not including comfort medications for the transition and inadequate prescriptions to manage medications at home; and lack of information about daily care hindering smooth transition and continuity of care.
Conclusion: Our findings identify gaps and suggest opportunities to improve hospital-to-hospice transitions that will serve as the basis for future interventions to design safe and high-quality hospital-to-hospice care transitions.
AIMS AND OBJECTIVES: To assess nurses' perceptions of what constitutes optimal end-of-life (EOL) care in hospital and evaluate nurses' perceived barriers to EOL care delivery.
BACKGROUND: Care of dying patients is common in hospitals. However, little is known about the important elements of and barriers to optimal EOL care from key service providers' perspective, which is crucial for quality EOL care in hospital settings.
METHOD: This is a cross-sectional survey. Nurses practicing in hospitals recruited by convenience sampling completed self-report survey questionnaires. STROBE checklist was used in study reporting.
RESULTS: One-hundred-and-seventy-five nurses participated in the survey. The majority (70%) had experience in caring for dying patients. The five most highly perceived factors constituting optimal EOL care included: 'families know and follow patient's EOL wishes'; 'patients emotional concerns identified and managed well'; 'patients participating in decision-making'; 'EOL care documents stored well and easily accessed'; and 'provide private rooms and unlimited visiting hours for families of dying patients'. Top five barriers were 'nurses and doctors being too busy'; 'insufficient private room/space'; 'nurses have limited training in EOL care'; and 'families have unrealistic expectations of patient's prognosis'. Multivariate regression analysis identified that nurses without experience in caring for dying patients reported a significantly higher number of perceived barriers towards EOL care (p = .012). Those with post-graduate degree training reported significantly fewer perceived barriers (p = .007).
CONCLUSION: Findings identified essential elements for optimal hospital EOL care not only involving patients and families in EOL decision and care, but also documentation and environmental issues in the healthcare system level and the needs for strengthening manpower and expertise at palliative care policy level.
RELEVANCE TO CLINICAL PRACTICE: This study revealed quantitative data to inform health service managers and policy makers in terms of training and service development/ re-design for EOL care in hospital settings.
Formée en France, je travaille en Belgique depuis 2015. Je suis médecin généraliste, diplômée en soins palliatifs après deux années de formation théorique et de stages. Avant 2015, j'ai travaillé en France en équipe mobile de soins palliatifs intra et extra hospitalière, ainsi qu'en unité de soins palliatifs.
Occasion nous est donnée de décrire notre expérience si riche pour préciser et défendre une manière particulière de penser l'art-thérapie : non pas une thérapie qui passe par l'art mais bien plutôt une rencontre avec un potentiel créatif qui se diffuse au-delà des patients, aux soignants et aux accompagnants. Cela remet du "jeu" et du mouvement dans les figures figées par la scène hospitalière.
Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
De nombreux parents prennent conscience qu'il n'est pas facile de parler en famille de l'expérience douloureuse de la perte d'un bébé avant la naissance. C'est ce qu'ont vécu les trois mamans, auteurs et illustratrice de ce petit livre. Elles l'ont conçu pour aider des parents à partager des moments d'échange et d'intimité avec leurs enfants, lorsqu'ils ont des questions exprimées ou implicites après une telle épreuve.
Leur ouvrage sera une aide précieuse pour parler de cette souffrance avec les enfants de six à dix ans.
Virginie et Joann partent en vacances à la montagne avec leurs parents. Sur le chemin des vacances, la famille s'arrête à l'hôpital pour rendre visite à leur grand-père qui est très malade et qui va bientôt mourir. Perdus en montagne, les enfants partent à la recherche de réponses à leurs questions sur la mort, la disparition...
Le père d'Olivia, 10 ans, est malade. Atteint d'une maladie neurodégénérative, il ne peut plus monter les escaliers et est installé en bas, jusqu'au moment où il devra être hospitalisé et où il décidera de ne plus lutter. A travers le regard d'Olivia, heureuse d'être entourée de tous les siens et de son chat, entre les larmes et les rires, nous suivons le quotidien de la famille confrontée à la maladie et à la fin de vie.
BACKGROUND: Early palliative care team consultation has been shown to reduce costs of hospital care. The objective of this study was to investigate the association between palliative care team (PCT) consultation and the content and costs of hospital care in patients with advanced cancer.
MATERIAL AND METHODS: A prospective, observational study was conducted in 12 Dutch hospitals. Patients with advanced cancer and an estimated life expectancy of less than 1 year were included. We compared hospital care during 3 months of follow-up for patients with and without PCT involvement. Propensity score matching was used to estimate the effect of PCTs on costs of hospital care. Additionally, gamma regression models were estimated to assess predictors of hospital costs.
RESULTS: We included 535 patients of whom 126 received PCT consultation. Patients with PCT had a worse life expectancy (life expectancy <3 months: 62% vs. 31%, p < .01) and performance status (p < .01, e.g., WHO status higher than 2:54% vs. 28%) and more often had no more options for anti-tumour therapy (57% vs. 30%, p < .01). Hospital length of stay, use of most diagnostic procedures, medication and other therapeutic interventions were similar. The total mean hospital costs were €8,393 for patients with and €8,631 for patients without PCT consultation. Analyses using propensity scores to control for observed confounding showed no significant difference in hospital costs.
CONCLUSIONS: PCT consultation for patients with cancer in Dutch hospitals often occurs late in the patients' disease trajectories, which might explain why we found no effect of PCT consultation on costs of hospital care. Earlier consultation could be beneficial to patients and reduce costs of care.
BACKGROUND: Advance care planning (ACP) is not well implemented in hospital. Implementation theory stresses the importance of knowing what hospitalised palliative patients and their families experience as barriers or as facilitators in the uptake of ACP with their treating physician.
AIMS: This study aimed to gain an in-depth understanding of what hospitalised palliative patients and their families experienced as barriers or facilitators for having ACP conversations.
METHODS: We used a tape-assisted recall procedure to conduct 29 videotaped interviews with hospitalised patients and their families. We used content analysis based on grounded theory principles.
RESULTS: Four major fields of tension were discovered: not knowing what to expect from the treating physician; not being sure the treating physician can be a trusted partner; daring to speak about ACP; and staying loyal to one's own wishes.
CONCLUSIONS: Patients and families need physicians who are accessible and can be trusted ACP partners throughout the disease process.
CONTEXT: Palliative care aligns treatments with patients' values and improves quality of life, yet whether receipt of recommended elements of palliative care is associated with end-of-life outcomes is under-studied.
OBJECTIVE: To assess whether recommended elements of palliative care (pain and symptom management, goals of care, spiritual care) precede in-hospital death and hospice referral, and whether delivery by specialty palliative care affects that relationship.
METHODS: We conducted structured chart reviews for decedents with late-stage cancer, dementia, and chronic kidney disease with a hospital admission during the six months preceding death. Measures included receipt of recommended elements of palliative care delivered by any clinician and specialty palliative care consult. We assessed associations between recommended elements of palliative care and (1) in-hospital death and (2) hospice referral using multivariable Poisson regression models.
RESULTS: Of 402 decedents, 67 (16.7%) died in-hospital and 168 (41.8%) had hospice referral. Among elements of palliative care, only goals-of-care discussion was associated with in-hospital death (Incidence Rate Ratio [IRR]:1.37; Confidence Interval (CI):1.01-1.84) and hospice referral (IRR:1.85; CI:1.31-2.61). Specialty palliative care consult was associated with a lower likelihood of in-hospital death (IRR:0.57; CI: 0.44-0.73) and a higher likelihood of hospice referral (IRR:1.45; CI: 1.12-1.89) compared to no consult.
CONCLUSION: Goals-of-care discussions by different types of clinicians commonly precede end-of-life care in hospital or hospice. However, engagement with specialty palliative care reduced in-hospital death and increased hospice referral. Understanding the causal pathways of goals-of-care discussions may help build primary palliative care interventions to support patients near the end of life.
1. Geriatric palliative care requires integrating the disciplines of hospital medicine and palliative care in pursuit of delivering comprehensive, whole-person care to aging patients with serious illnesses.
2. Older adults have unique palliative care needs compared to the general population, different prevalence and intensity of symptoms, more frequent neuropsychiatric challenges, increased social needs, distinct spiritual, religious, and cultural considerations, and complex medicolegal and ethical issues.
3. Hospital-based palliative care interdisciplinary teams can take many forms and provide high-quality, goal-concordant care to older adults and their families.
Importance: Although palliative care (PC) historically focused on patients with cancer and those near the end of life, evidence increasingly demonstrates a benefit to patients with a broad range of serious illnesses and to those earlier in their illness. The field of PC has expanded and evolved rapidly, resulting in a need to characterize practice over time to understand whether it reflects evolving evidence and guidelines.
Objective: To characterize current practice and trends among patients cared for and outcomes achieved by inpatient specialty PC services in the United States.
Design, Setting, and Participants: This retrospective cohort study was performed from January 1, 2013, to December 31, 2017, at 88 US hospitals in which PC teams voluntarily participate in the Palliative Care Quality Network (PCQN), a national quality improvement collaborative. A total of 135 197 patients were referred to PCQN teams during the study period. Initial analyses of the study data were conducted from March 3 to March 21, 2018.
Exposure: Inpatient PC consultation.
Main Outcomes and Measures: A total of 23 standardized data elements collected by PCQN teams that provided information about the characteristics of referred patients, including age, sex, Palliative Performance Scale score, and primary diagnosis leading to PC consult; reason(s) given for the consultation; and processes of care provided by the PC team, including disciplines involved, number of family meetings held, advance care planning documentation completed, and screened for and intervened on needs.
Results: A total of 135 197 patients were referred to inpatient PC (51.0% female; mean age, 71.3 years [range, 57.8-82.5 years]) and were significantly debilitated (mean Palliative Performance Scale score, 34.7%; range, 14.9%-56.8%). Cancer was the most common primary diagnosis (32.0%; range, 11.3%-93.9%), although rates decreased from 2013 to 2017 (odds ratio [OR], 0.84; 95% CI, 0.79-0.91; P < .001). Pain and other symptoms were common and improved significantly during the consultation period (pain: 2 = 5234.4, P < .001; anxiety: 2 = 2020.7, P < .001; nausea: 2 = 1311.8, P < .001; dyspnea: 2 = 1993.5, P < .001). Most patients were discharged alive (78.7%; range, 44.7%-99.4%), and this number increased over time (OR, 1.36; 95% CI, 1.27-1.46; P < .001). Compared with 2013, rates of discharge referral to clinic-based (OR, 4.00; 95% CI, 2.95-5.43; P < .001) and home-based PC (OR, 2.63; 95% CI, 1.92-3.61; P < .001) also increased significantly by 2017, whereas referrals to hospice decreased (OR, 0.56; 95% CI, 0.51-0.62; P < .001).
Conclusions and Relevance: Inpatient PC teams cared for an increasing percentage of patients with diagnoses other than cancer and saw more patients discharged alive, consistent with guidelines recommending specialty PC for all patients with serious illness earlier in their illnesses. Most patients with symptoms improved quickly. Variation in practice and outcomes among PCQN members suggests that there are opportunities for further improvements in care.
The use of multidimensional scales for assessing fear of death among nursing students can assist in teaching and evaluating the effectiveness of targeted training in thanatology. Research has demonstrated good psychometric characteristics of the Czech version of the Collett–Lester Fear of Death Scale (CL-FODS). It was applied to nursing students (N = 256), who reported as their biggest fear the process of their own dying. Greater fear of death and dying was found in students who had no experience of the dying and death of a loved one. Good internal consistency was achieved for the four subscales of the Czech CL-FODS.
Objectives: To explore the influence of hospital and patient characteristics on deaths at home among inpatients facing impending death.
Method: In this historical cohort study, 95,626 inpatients facing impending death from 362 hospitals in 2011 were recruited. The dependent variable was the place of death. The independent variables were the characteristics of the hospitals and the patients. A two-level hierarchical generalized linear model was used.
Results: In total, 41.06% of subjects died at home. The hospital characteristics contributed to 29.25% of the total variation of the place of death. Private hospitals (odds ratio [OR] = 1.32, 95% confidence interval [CI] = 1.00-1.75), patients >65 years old (OR = 1.48, 95% CI. = 1.42-1.54), married (OR = 3.15, 95% CI. = 2.93-3.40) or widowed (OR = 3.39, 95% CI. = 3.12-3.67), from near-poor households (OR = 5.16, 95% CI. = 4.57-5.84), having diabetes mellitus (OR = 1.79, 95% CI. = 1.65-1.94), and living in a subcounty (OR = 2.27, 95% CI. = 2.16-2.38) were all risk factors for a death at home.
Conclusion: Both hospital and patient characteristics have an effect of deaths at home among inpatients facing impending death. The value of the inpatient mortality rate as a major index of hospital accreditation should be interpreted intrinsically with the rate of deaths at home.