This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life.
Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life.
Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (>=7 Numerical Rating Scale 0–10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months.
Setting/participants: people living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics.
Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point.
Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.
Cet article est le premier d'une série de deux qui abordent l'expérience de la présence d'infirmières en soins palliatifs (SP) dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Dans cette étude qualitative, nous nous sommes intéressées à l'expérience de la présence telle que vécue et comprise par les infirmières en SP au regard des enjeux actuels du travail en SP au Québec. Huit infirmières qui oeuvraient exclusivement dans un service de SP spécialisés ont été rencontrées. Des entretiens semi-structurés ont été conduits avant et après la participation à une intervention de groupe sur le sens et la pleine conscience offerte dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Cet article se limite au temps 1 de l'étude. Notre analyse phénoménologique-interprétative (Smith et Osborn, 2007) a révélé que les participantes vivaient et comprenaient initialement la présence comme 1) une mise au diapason et 2) une rencontre avec l'autre et 3) d'un besoin de maîtriser le temps. Notre étude a également démontré que l'expérience de la présence peut (re)donner un sens au travail en SP. Finalement, nous avons pu élaborer une définition de la présence qui pourrait faciliter l'enseignement, l'apprentissage et le développement de la présence chez les infirmières de toutes disciplines.
Introduction: « La vie est courte, l’art est long, l’occasion fugitive, l’expérience trompeuse, le jugement difficile. Or, il faut non seulement se montrer soi-même accomplissant son devoir, mais faire aussi que le malade, les assistants et les éléments extérieurs accomplissent le leur ». Dans le contexte des soins palliatifs, le premier aphorisme d’Hippocrate résonne d’une étonnante modernité.
Trois axes de réflexion: Les trois premières affirmations questionnent sur le temps en soins palliatifs. Temps compté lorsque l’annonce déclenche un compte à rebours, temps accordé, partagé, temps de vie, du mourir voire du long mourir ? Comment vivre ce temps perçu comme incertain ? Quand initier le temps de la rencontre qui va mettre en place des soins palliatifs ? Les deux assertions suivantes expriment l’irréductible incertitude de la prise en charge palliative aussi bien en termes de pronostic qu’en termes d’éthique dans une société où les repères traditionnels s’effacent devant des revendications sociétales et la promotion d’une éthique liquide. Enfin la dernière phrase incite les soignants à réfléchir en termes de devoirs et d’engagements, de transdisciplinarité. Promouvoir l’émergence d’une culture palliative reposant sur une démarche « palliactive » : affirmer le refus de l’euthanasie, redéfinir les buts, les missions et les moyens des soins palliatifs dans leur triple dimension de proximité, d’appui et de recours. Plaider pour une mise en place plus précoce des soins palliatifs et non se limiter à l’urgence des fins de vie. Refonder la formation non seulement en termes de contenus mais aussi d’auditoires. Analyser et comprendre les fonctionnements locaux de la prise en charge palliative car il n’existe pas de soins palliatifs génériques mais des organisations et des structures qui sont hétérogènes.
Conclusion: Le premier aphorisme nous invite à réfléchir en termes d’écologie palliative. Cette écologie palliative doit partir d’un constat lucide de la vulnérabilité de notre société, des fragilités et des dépendances d’individus de plus en plus isolés alors même que les moyens accordés restent insuffisants. Si les soins palliatifs ne doivent pas refuser la technique et les alternatives technologiques, ils doivent rester fondés sur l’humain et sur la rencontre entre les personnes.
Gardening has well-established physical, social and emotional benefits for older adults in varied circumstances. In Detroit, Michigan (United States of America), as in many cities, policy makers, funders, researchers, community organisations and residents regard gardening as a means of transforming bodies, persons, communities, cities and broader polities. We draw on ethnographic research conducted during one gardening season with 27 older African Americans in Detroit to foreground the social dimensions of wellbeing in later life and thus develop a more robust and nuanced understanding of gardening's benefits for older adults. Based on anthropological understandings of personhood and kinship, this article expands concepts of wellbeing to include social relations across multiple scales (individual, interpersonal, community, state) and temporalities (of the activity itself, experiences of ageing, city life). Even when performed alone, gardening fosters connections with the past, as gardeners are reminded of deceased loved ones through practices and the plants themselves, and with the future, through engagement with youth and community. Elucidating intimate connections and everyday activities of older African American long-term city residents counters anti-black discourses of ‘revitalisation’. An expansive concept of wellbeing has implications for understanding the generative potential of meaningful social relations in later life and the vitality contributed by older adults living in contexts of structural inequality.
Background and purpose: Introducing palliative care earlier in the disease trajectory has been found to provide better management of physical and psychological suffering. In France, the proportion of cancer patients who receive palliative care is unclear. This study aimed primarily to measure the prevalence of access to inpatient palliative care and associated patient-level factors, and to identify the time between access to palliative care and death. Patients and methods: A nationwide retrospective cohort study using data from the French national health system database (SNDS - Système national des données de santé). All those diagnosed with cancer in 2013 who died between 2013 and 2015 were included. Access to inpatient palliative care was the main outcome. Results: Of the 313,059 patients diagnosed with cancer in 2013 in France, 72,315 (23%) died between 2013 and 2015. Overall, 57% had access to inpatient palliative care. The following groups were the most likely to have access to palliative care: women (adjusted odds ratio, aOR: 1.15; 95% CI: 1.11-1.20), people aged 18-49 (aOR: 1.38; 95% CI: 1.26-1.51), individuals with metastatic cancer (aOR: 2.04; 95% CI: 1.96-2.13), and patients with cancer of the nervous system (aOR: 1.80; 95% CI: 1.62-2.01). The median time between palliative care and death was 29 (interquartile range: 13-67) days. Conclusion: More than half of cancer patients who died within 2 years after diagnosis had access to inpatient palliative care. Access to palliative care occurs late in the disease trajectory, often during the final month of life. Further research and guidelines are warranted to optimize access to early, standardized palliative care.
Background and Purpose: Do-not-resuscitate (DNR) orders are common after stroke, though there are limited data on trends over time. We investigated time trends in DNR orders in a community with a large minority population.
Methods: Cases of ischemic stroke (IS) or intracerebral hemorrhage (ICH) were identified from the BASIC study (Brain Attack Surveillance in Corpus Christi) from June 2007 through October 2016. Cox proportional hazards models were used to assess time to DNR orders, with an interaction term added to allow separate hazard ratios for early (=24 hours) and late (>24 hours) DNR. Stroke type–specific calendar trends were assessed with an interaction term between calendar year (linear) and stroke type.
Results: Two thousand six hundred seventy-two cases were included (ICH, 14%). Mean age was 69, 50% were female, and race-ethnicity was Mexican American (58%), non-Hispanic white (37%), and African American (5%). Overall, 16% had a DNR order during the hospitalization. For ICH, DNR orders (early and late) were stable over the study period. However, early DNR orders became more common over time after ischemic stroke (hazard ratio for 2016 versus 2007: 1.89; 95% CI, 1.06–3.39), with no change over time for late DNR orders after ischemic stroke. Mexican Americans (hazard ratio, 0.65; 95% CI, 0.50–0.86) and African Americans (hazard ratio, 0.17; 95% CI, 0.04–0.71) were less likely than non-Hispanic whites to have early DNR orders, though there were no race-ethnic differences in late DNR orders. There was no change in race-ethnic difference in DNR orders over the time of the study (interaction P>0.60).
Conclusions: Despite revised national guidelines cautioning against early DNR orders in ICH, presence of DNR orders after ICH was stable between 2007 and 2016, with only slight increases in early DNR orders after ischemic stroke. Mexican Americans and African Americans remain less likely than non-Hispanic whites to have early DNR orders after stroke.
BACKGROUND: Palliative care can improve end-of-life care and reduce health care expenditures, but the optimal timing for initiation remains unclear. We sought to characterize the association between timing of palliative care, in-hospital deaths, and health care costs.
METHODS: This is a retrospective cohort study including all patients who were diagnosed and died of colorectal cancer between 2004 and 2012 in Manitoba, Canada. The primary exposure was timing of palliative care, defined as no involvement, late involvement (less than 14 d before death), early involvement (14 to 60 d before death), and very early involvement (>60 d before death). The primary outcome was in-hospital deaths and end-of-life health care costs.
RESULTS: A total of 1607 patients were included; 315 (20%) received palliative care and 162 (10%) died in hospital. Compared to those who did not receive palliative care, patients with early and very early involvement experienced significantly decreased odds of dying in hospital (OR 0.21 95% CI 0.06-0.69 P = 0.01 and OR 0.11 95% CI 0.01-0.78 P = 0.03, respectively) and significantly lower health care costs. There were no significant differences in in-hospital deaths and health care costs between patients without palliative care and those who received late palliative care.
CONCLUSIONS: Early palliative care involvement is associated with decreased odds of dying in hospital and lower health care utilization and costs in patients with colorectal cancer. These findings provide real-world evidence supporting early integration of palliative care, although the optimal timing (early versus very early) remains a matter of debate.
BACKGROUND: The aim of this study was to gain insight into the experience of time of terminal patients with cancer. Experience of time is relevant in palliative care in both policy and practice. On a policy level, the Quality Adjusted Life Year (QALY), the most used outcome measure for cost-effectiveness analysis in healthcare, assumes time to be a linear and additive variable, which is one of the reasons that its applicability in palliative care is questioned. On a practice level, a better understanding of the experience of time of patients with limited time left, could help to recognize if and how these patients can have a more meaningful use of time. The main focus of this study was to discover whether time perception of these patients in their last months of life had changed as compared to earlier periods of time in their lives in good physical health. The pace of time and time dominance (comparison of past, present and future) were investigated.
METHODS: In several hospices and palliative care units in the Netherlands, twelve semi-structured interviews were conducted with terminal patients with cancer.
RESULTS: Time perception at the end of life had changed for most participants. They all lived on a day-to-day basis in the terminal phase, independent of their way of life in the healthy phase. Furthermore, the experienced duration of a day turned out to be very different between patients, but also between days, depending on daily activities. Besides, for most patients for whom the future was the dominant period of time in the healthy phase, the dominant period of time in the terminal phase had become the past.
CONCLUSIONS: Time perception of terminal patients with cancer differed from the time perception in their relatively healthy phase of life. This suggests that the LY part of the QALY is not comparable for all phases of life.
Background: Casarett et al. tested an intervention to improve timeliness of referrals to hospice. Although efficacious in the nursing home setting, it was not tested in other settings of care for seriously ill patients. We, therefore, adapted Casarett's intervention for use in home health (HH).
Objective: To assess feasibility, acceptability, and patient outcomes of the adapted intervention.
Design: We conducted a nine-week observational pilot test.
Setting/Subjects: We conducted our pilot study with two HH agencies. Eligible patients included those who were high risk or frail (identified by the agencies' analytic software as being moderate to high risk for hospitalization or a candidate for hospice referral). Clinical managers identified eligible patients and registered nurses then delivered the intervention, screening patients for hospice appropriateness by asking about care goals, needs, and preferences and initiating appropriate follow-up for patients who screened positive.
Measurements: We collected quantitative data on patient enrollment rates and outcomes (election of hospice and/or palliative care). We collected qualitative data on pilot staff experience with the intervention and suggestions for improvement.
Results: Pilot HH agencies were able to implement the intervention with high fidelity with minimal restructuring of workflows; 14% of patients who screened positive for hospice appropriateness elected hospice or palliative care.
Conclusions: Our findings suggest the adapted intervention was feasible and acceptable to enhance timeliness of hospice and palliative care referral in the HH setting. Additional adaptations suggested by pilot participants could improve impact of the intervention.
Grief research has typically centered on one time point, without considering the impact of multiple losses over time. In this study, 546 bereaved emerging adults were divided into three groups: those who experienced a recent loss (0-2 years ago), a past loss (>2 years ago), or a combination of both recent and past losses. Differences between the groups on resilience, depression, and grief symptomatology were examined. Those who had experienced both losses (recent and past) and recent losses endorsed significantly more grief symptoms than those in the past loss group. Findings highlight how multiple losses impact grief.
The Quality Oncology Practice Initiative has several metrics related to end-of life (EOL) care, including hospice enrollment =3 days, with lower scores signaling better performance. Of privately insured patients with head and neck cancer, 3.5% were enrolled in hospice prior to death and 21.3% spent =3 days in hospice, indicating aggressive EOL care. Patients with late hospice enrollment had higher spending in the last 30 days of life (DOL). Patients in hospice =3 days spent $37,426, while those in hospice >3 days spent $24,418 (P = .002). The largest portion of this difference was attributable to inpatient services. Patients in hospice =3 days spent $22,089 on inpatient services in the last 30 DOL, while those in hospice >3 days spent $8361 (P < .001). Further research is needed to determine if more high-value care can be provided with earlier hospice enrollment and to ensure that goal concordance is included in defining high-value care.
In 2012, we published a study in this journal exploring the emergence of unique skin changes in end-of-life patients admitted to a palliative care unit. The purpose of the study was to describe the skin changes and identify the relationship between these changes and time of death. In the above study of 80 patients, the skin changes were found to be unique and different from Kennedy terminal ulcers and deep tissue injuries. Median time from identification of skin changes and death was 36 hours. The phenomenon was named as Trombley-Brennan terminal tissue injury. The current article presents findings that include the study of additional 86 patients. The results further validate the phenomenon and its relationship with time of death.
BACKGROUND: Most people in the United States and other countries cite their preferred location of death as their homes. However, intractable symptoms sometimes require hospitalization, especially if significant sedation becomes necessary. For over a decade, Hospice of Central New York has been using compounded phenobarbital suppositories with individuals in whom adequate sedation has not been achieved using sufficient doses of antipsychotics or benzodiazepines but prefer to remain in their homes.
OBJECTIVES: (1) Describe the use of phenobarbital suppositories in homes for the purpose of sedation. (2) Understand patient characteristics of potential users and those in whom suppositories were actually used. (3) Measure time to death after initiating the phenobarbital suppositories.
SETTING: Medicare-certified not-for-profit hospice organization in New York State.
METHOD:: Retrospective case series.
RESULTS: Of 1675 patients enrolled in hospice over an 18-month period, phenobarbital suppositories were placed in the homes of 90 patients for potential use. Suppositories were initiated in 31 of the 90 patients. Agitated delirium was the major symptom for which suppositories were placed and initiated. Both groups had a greater prevalence of cancer diagnoses than the target population. The mean time to death after initiation of phenobarbital suppositories was 38.8 hours. None of the users were hospitalized.
CONCLUSION: The use of compounded phenobarbital suppositories for the purpose of palliative sedation is an alternative for patients and families who desire to remain home despite refractory symptoms.
BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents.
METHODS: We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care.
RESULTS: The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race.
CONCLUSIONS: In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.
PURPOSE: To conduct a systematic review and meta-analysis examining the association of the prevalence of depression and time since spousal loss in widowed people.
METHODS: The databases MEDLINE, Embase and PsycInfo were searched (May 2017) for papers reporting on time since spousal loss in widowed people and the prevalence of common mental disorders. A systematic review was conducted according to MOOSE guidelines. Random effects meta-analyses of the prevalence of depression were conducted by intervals of time since spousal loss.
RESULTS: The literature search identified 12,982 studies of which 22 were eligible for inclusion in the systematic review. Of these, 14 were furthermore eligible for inclusion in the meta-analysis. The summary estimates found in the meta-analysis for the prevalence of depression in the intervals of time since spousal loss were: = 1 month: 38.2% (21.9–55.8%); > 1 month to 3 months: 25.0% (17.3–33.5%); > 3 months to 6 months: 23.1% (18.0–28.7%); > 6 months to 12 months: 19.4% (15.2–24.0%); > 12 months to 18 months: 11.1% (5.3–18.7%); > 18 months to 24 months: 15.2% (12.3–18.2%); > 24 months to 60 months: 10.5% (4.3–18.5%).
CONCLUSION: Widowhood is associated with a high prevalence of depression and the study identifies a population group needing special attention in daily clinical practice. The prevalence is highest in the first month of widowhood, however, continues to be high at least 5 years into widowhood.
For patients receiving palliative care, expressing a preferred place of death (PPD) reduces anxiety and depression and increases the likelihood of achieving their preference. However, during the course of a life-limiting illness, patients commonly change their PPD at least once prior to death. The aim of this study was to identify the pattern and timing of how patients (and families) receiving specialist palliative care change their PPD over time. A retrospective chart audit was conducted of patients who died over a 7-month period whilst in the care of a metropolitan-based Community Specialist Palliative Care Service where PPD is routinely recorded every time a discussion on the topic occurs. These discussions are triggered by various factors which highlight the need to re-assess or confirm PPD. Results showed that 80% of patients achieved their PPD. There was no change to PPD in 64% of patients after the initial assessment, while 36% changed preferences once (27%), twice (8%) or three times (1%). Symptom management (10%) and family requests (30%) were cited as reasons for changing PPD. This study highlights that providers should revisit end-of-life discussions with patients along the disease trajectory and facilitate the consideration of all possible places for a good and safe death and the different scenarios that may influence patient decisions.