En USP, la vie et sa créativité intrinsèque prennent une place centrale parce que parfois seul un surinvestissement, dernier embrasement de ses facultés créatrices et relationnelles, peut permettre à la personne, dans une seconde étape, le désinvestissement nécessaire à la quitter. Pour se mettre au monde une dernière fois avant de disparaître, la personne a parfois besoin de chercher par les voies les plus inattendues de nouvelles propositions d'identité, de nouvelles pistes.
Background: End-of-life spending and health care utilization in older adults with COPD have not been previously described.
Methods: We examined data from Medicare beneficiaries =65 years with COPD who died between 2013-2014. End-of-life measures were retrospectively reviewed for two years prior to death. Hospital referral regions (HRRs) were categorized into quintiles of age-sex-race-adjusted overall spending during the last two years of life. We examined geographic and spending quintile variation in spending and health care utilization across the continuum.
Results: We investigated data from 146,240 decedents with COPD from 306 HRRs. Age-sex-race-adjusted overall spending per-decedent during the last two years of life varied significantly nationwide ($61,271±$11,639 per decedent; range: $48,288±$3,665 to $79,453±$9,242). Inpatient care accounted for 40.2% of spending ($24,626±$6,192 per decedent). Overall, 82%±4% of decedents were admitted to the hospital for 13.7±3.1 days and 55%±11% to an intensive care unit for 5.4±2.5 days. Compared to HRRs in the lowest spending quintile, HRRs in the highest spending quintile had 1.5-fold longer hospital length of stay. Skilled nursing facilities accounted for 11.6% of spending ($7101±$2403 per decedent) and were used by 38%±7% of decedents for 18.7±4.9 days. Hospice accounted for 10.3% of spending ($6,307±$2,201 per decedent) and was used by 47%±9% of decedents for 39.7±14.8 days. Significant geographic variation in hospice use existed nationwide.
Conclusions: End-of-life spending and healthcare utilization in older adults with COPD varied substantially nationwide. Decedents with COPD frequently used acute and post-acute care near the end of life. Hospice use was higher than expected, with significant geographic disparities.
BACKGROUND: This study considers the specific context of the end of life, in particular the agony phase, and the experience of sharing the body observation competence with the relatives of dying patients, in order to consider the effect of such psychological intervention.
METHODS: The research was conducted in two phases: during the pre-exitus period (days or hours before the death of the patient) six relatives received some information .on the phenomenology of agony; during the post-exitus, they participated in semi-structured interviews, which were audio-recorded and transcribed with the purpose of extracting relevant aspects of their experience with their terminally-ill relative. The Interpretative Phenomenological Analysis (IPA) was used to cluster the emerged experiences by thematic analysis, which was performed using the Atlas.ti 7 software.
RESULTS: The relatives' verbatim representation is clustered in three areas of thematic prevalence: context and choice of the hospice, phenomenology of agony and psychological support. The first area shows how essential the choice of the hospice was for the patient. Even if the hospice is perceived as a place of death, it allows to manage the pain and simultaneously relieves the caregiver's burden. The second area describes the process of perception of body changes during agony. Finally, the third area outlines how giving elements to recognise the progression of the dying body and suggestions on the functional behaviour around the agonising patient may fill the cultural lack of practical experience regarding dying.
CONCLUSIONS: The results require further investigation, starting from the positive feedback on the efficacy of a specific support model called "human protocol".
OBJECTIVES: Reliable national estimates of hospice use and underuse are needed. Additionally, drivers of hospice use in the United States are poorly understood, especially among noncancer populations. Thus the objectives of this study were to (1) provide reliable estimates of hospice use among adults in the United States; and (2) identify factors predicting use among decedents and within subsamples of cancer and noncancer deaths.
DESIGN: We conducted a prospective cohort study using the Health and Retirement Study survey. Excluding sudden deaths, we used data from the 2012 survey wave to predict hospice use in general, and then separately for cancer and non-cancer deaths.
SETTING: Study data were provided by a population-based sample of older adults from the U.S.
PARTICIPANTS: We constructed a sample of 1,209 participants who died between the 2012 and 2014 survey waves.
MEASUREMENTS: Hospice utilization was reported by proxy. Exposure variables included demographics, functionality (activities of daily living [ADLs]), health, depression, dementia, advance directives, nursing home residency, and cause of death.
RESULTS: Hospice utilization rate was 52.4% for the sample with 70.8% for cancer deaths and 45.4% for noncancer deaths. Fully adjusted model results showed being older (odds ratio [OR] = 1.54), less healthy (OR = .79), having dementia (OR = 1.52), and having cancer (OR = 5.47) were linked to greater odds of receiving hospice. Among cancer deaths, being older (OR = 1.64) and female (OR = 2.54) were the only predictors of hospice use. Among noncancer deaths, increased age (OR = 1.58), more education (OR = 1.56), being widowed (OR = 1.55), needing help with ADLs (OR = 1.13), and poor health (OR = .77) were associated with hospice utilization.
CONCLUSION: Findings suggest hospice remains underutilized, especially among individuals with noncancer illness. Extrapolating results to the US population, we estimate that annually nearly a million individuals who are likely eligible for hospice die without its services. Most (84%) of these decedents have a noncancer condition. Interventions are needed to increase appropriate hospice utilization, particularly in noncancer care settings.
Background: Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients’ death in French palliative care units and their needs for support.
Methods: This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient’ death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients’ death based on an Hospital Anxiety and Depression score (range 0–42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient’ death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient’s death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives.
Discussion: This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives’ experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs.
Trial registration: NCT03748225 registered on 11/19/2018. Recruiting patients.
Individuals with terminal illness are dying behind bars and many state prison administrators have incorporated on-site hospice and palliative care services. Little is known, however, about these programs since a 2010 study of prison hospice characteristics. We provide an updated description and reflection of current hospice and palliative care programs in state prisons serving incarcerated persons with terminal illness. A cross-sectional survey was sent to representatives of all known prisons offering hospice and palliative care programs and services (N = 113). Questions were drawn from an earlier iteration regarding interdisciplinary team (IDT) membership, training length and topics, peer caregivers, visitation policies, bereavement services, perceived stakeholder support, and pain management strategies. Additional questions were added such as estimated operational costs, peer caregiver input in patient care, and the strengths and weaknesses of such programs. Frequency distributions were calculated for all study variables. Responding representatives (n = 33) indicated IDTs remain integral to care, peer caregivers continue to support dying patients, and perceived public support for these programs remains low. Reduced enthusiasm for the programs may negatively influence administrative decision-making and program resources. Further, peer caregiver roles appear to be changing with caregivers charged with fewer of the identified tasks, compared with the 2010 study.
Background: In health care, clinical effectiveness involves evaluating the degree to which clinical interventions achieve beneficial patient and caregiver outcomes.
Objective: To evaluate the clinical effectiveness of care in a specialist palliative care unit (SPCU) in Ireland, including an analysis of the temporal relationship among admission, Phase of Illness and patient and family distress.
Design/Measurements: A consecutive case series with prospectively collected admission data (n = 400). Using a casemix tool (Phase of Illness), pain, other symptoms, psychological and family distress, and performance status were documented on admission and then daily by medical staff.
Results: Three hundred forty-two (85%) patients had complete data recorded on day 1. After admission, there were linear correlations between days since admission and progressive improvements in pain (Cramer's V = 0.131, p < 0.001), other symptoms (V = 0.206, p < 0.001), psychological distress (V = 0.101, p < 0.001), and family distress (V = 0.124, p < 0.001). Forty-three percent were in an unstable phase on admission. Nearly two thirds (60.7%) of these unstable patients converted to a stable phase within 48 hours of admission. Over the first 72 hours, 70.7% of unstable patients converted to a stable phase. There was also a significant correlation between phase stabilization and pain and symptom control (p = 0.007). Stable phase over the first 4 days and first 14 days was associated with significantly higher performance status.
Conclusion: This study demonstrates the significant clinical effectiveness of SPCU admission across the different aspects of patient and family care.
BACKGROUND: This study examined factors associated with potentially burdensome end-of-life (EOL) transitions between care settings among older adults with advanced cancer in nursing homes (NHs).
METHODS: A retrospective analysis of deceased older NH residents with poor-prognosis solid tumors was conducted with Medicare claims and the Minimum Data Set. A potentially burdensome transition was defined as 2 or more hospitalizations or an intensive care unit admission in the last 90 days of life.
RESULTS: Among 34,670 subjects, many had moderate to severe cognitive impairment (53.8%), full dependence in activities of daily living (ADLs; 66.5%), and comorbidities such as congestive heart failure (CHF; 29.3%) and chronic obstructive pulmonary disease (34.1%). Only 56.3% of the patients used hospice at any time in the 90 days before death; 36.0% of the patients experienced a potentially burdensome EOL transition, and this was higher among patients who did not receive hospice (45.4% vs 28.7%; P < .01). In multivariable analyses, full dependence in ADLs (odds ratio [OR], 1.70; P < .01), CHF (OR, 1.48; P < .01), and chronic obstructive pulmonary disease (OR, 1.28; P < .01) were associated with a higher risk of burdensome EOL transitions. Those with do-not-resuscitate directives (OR, 0.60; P < .01) and impaired cognition (OR, 0.89; P < .01) had lower odds of burdensome EOL transitions.
CONCLUSIONS: NH residents with advanced cancer have substantial comorbidities and functional impairment, yet more than a third experience potentially burdensome EOL transitions. These findings help to identify a population at risk for poor EOL outcomes in order to target interventions, and they point to the importance of advanced care planning in this population.
This qualitative study examined the influence of hospice photography on patients' end-of-life experiences, families' experiences with hospice and grief, and hospice social work practice. Hospice photography was defined in this study as photographs of hospice patients taken by social workers in the service of legacy construction. Six social workers were interviewed about the photographs they had previously taken of patients. The themes revealed were categorized as hospice photography's perceived and potential effects on patients, families, and practice and the role of smartphone technology. The data suggested that hospice photography may positively affect patients, families, and practice due to its reported ability to build and enhance rapport, facilitate therapeutic discussion, affirm patients' dignity, worth, and self-esteem, provide opportunities for bearing witness, and increase social workers' job satisfaction. Potential effects of the use of hospice photography in social work practice included the ability to tangibly contextualize the end-of-life experience; improve termination and closure; and provide comfort during the grieving process.
Living in a hospice department is an intense experience for patients, caregivers, and healthcare professionals. End-of-life care aims to conduct vulnerable dying patients towards a painless and peaceful death. The importance of a strong staff-patient relationship and the perspective of pain and suffering from patients has already been studied. This study aimed to explore patients' inner needs living in hospice through a qualitative research approach. A descriptive qualitative study was conducted in the hospice department at ARNAS Civico in Palermo, Italy. From a qualitative research point of view, a significant sample of ten dying patients was interviewed. Data were collected until saturation by in-depth interview using a semi-structured interview guide, and Colaizzi's method was used. Five themes emerged: experiencing hospice, hospice staff, family role, coping with the disease, and death. Human relationships seem to represent a fundamental key in patients' end-of-life, especially in their family fondness. Predictably, terminally ill patients seem to fear pain and incoming death. Even though patients had everything they needed in the hospice, their main thoughts were always focused on human relationships. End-of-life medicine should improve the quality of time that each patient could spend with significant others to improve end-of-life care.
Background: Delirium in advanced cancer inpatient ranges between 13% and 85%. Reasons for this variability on the reported data could be related to the setting where they are admitted.
Methods: This is an observational, comparative, prospective study on delirium diagnosis and delirium course of advanced cancer inpatients in two different palliative care settings. Hospice (C1) versus palliative care supportive team (C2). Differences between delirium precipitants, delirium treatment, and delirium survival were observed.
Results: From 582 consecutive admissions, 494 from C1 and 88 from C2, finally 227 patients met inclusion criteria, were entered in the study. Total population delirium rate at admission, if we add both centers, was 57 patients (25%), 46 (26%) from C1 and 11 (22%) from C2; no statistically significant differences between delirium rate at admission between the two centers were found ( 2). When delirium course between delirious patients admitted in C1 and C2 was analyzed, a significantly higher rate of delirium reversibility was found in C2 [11/14 (78%)] versus [9/65 (14%)] in C1 ( 2p = 0.001).
Conclusion: The frequency of delirium at admission and during the hospitalization in advanced cancer patients does not seem to be related to the setting, what seems to be related is the delirium course.
Objective: To describe trends in hospice social work visits in the last week of life before and after the introduction of the service intensity add-on (SIA) payment reform in 2016.
Background: SIA was introduced to compensate hospices for the intensity of caring for individuals at the end of life; it is an hourly rate paid for registered nurse and social worker visits occurring during the last week of a beneficiary's life. Little is known about how hospices responded to this payment incentive.
Design: This is a pre-post descriptive study.
Setting/Subjects: Subjects were 2015–2016 hospices caring for Medicare beneficiaries.
Results: We find a modest increase in social work visits in the last week of life from 2015 (pre-SIA) to 2016 (post-SIA). This modest increase masks significant variation based on organizational characteristics, such as size, facility type, and participation in payment demonstrations.
Discussion: Our findings underscore the importance of examining both the overall impact of this type of policy and the change in distribution to identify whether change is being realized uniformly or is associated with certain types of organizations. A number of potential barriers exist to responding to policy incentives that may not be evenly felt across the hospice community.
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.
BACKGROUND: Hospices provide multidimensional care. In the Netherlands, patients with <3 months estimated life expectancy have access to hospice care. Insight into patients admitted to hospices and the care provided is lacking. In preparation for a national multicenter study, a pilot study was performed.
OBJECTIVE: The primary objective was to test the appropriateness of the study procedures and the availability of hospice patient records (HPRs), and patient and care characteristics.
METHOD: A cross-sectional pilot study was performed using a descriptive exploratory design. Sixteen hospices were invited to participate, and HPRs from 8 deceased patients per hospice were selected. Data were collected using self-developed electronic case report forms.
OUTCOMES: (1). Appropriateness of procedures: availability of HPRs and identified barriers and strategies. (2) Availability of patient and care characteristics in HPRs.
RESULTS: In total, 104 HPRs of patients from 13 hospices were enrolled. Various types of HPRs were found with different availabilities: nurses' records were most available (98%) compared to volunteers' records (62%). Overarching barriers were as follows: ethical issues, lack of knowledge, and lack of communication. Information about the illness was most available (97%), whereas descriptions of experienced symptoms were least available (10%).
CONCLUSION: Collecting HPRs is difficult and time-consuming. Specifically, data from separate records of home care nurses and general practitioners were difficult to come by. Patient and care characteristics were alternately present, which led to an extension of data collection in HPRs to 3 time periods. Piloting is essential to adjust study procedures and outcome measures to ensure a feasible national multicenter hospice study.
This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
INTRODUCTION: Hospice care (HC) in the Netherlands is available for patients with life expectancies <3 months. Little is known about expectations of patients who might be in need of HC. This study aims to gain insight into expectations of patients regarding HC in order to ameliorate HC to become driven by patient needs.
DESIGN: A generic qualitative study, using semistructured interviews and thematic analysis, is performed in the Netherlands from January to June 2018. A purposeful sample of 13 participants was drawn.
RESULTS: Participants expected hospice admission only when the burden became unbearable and a home death cannot be reached. Participants expected a homely atmosphere, where one can continue the life lived at home as much as possible. Participants supposed empathic professional caregivers, capable of providing appropriate care. The general practitioner is expected to stay involved in the care process due to the mutual trust. Medical and daily care are required to be provided by competent professionals, where volunteers are expected to provide supportive care. All caregivers are supposed to provide a listening ear and "being there" for participants. Social care and spiritual care are generally projected to be private matters, unless it is requested.
CONCLUSIONS: Patients in the palliative phase who might be in need of HC have specific expectations. Perceptions of HC in the public domain should be nuanced in response to these expectations, and information provision on HC should be improved. Then, expectations could be met to make HC more driven by patient needs and future oriented.
The purpose of this update is to summarize and critique research articles in Hospice and Palliative Care from 2018 that are pertinent and impactful in informing clinical practice. The articles were presented at the 2019 Annual Assembly of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA). Eight original research articles published between January 1, 2018, and December 31, 2018, were identified through a systematic PubMed search using the terms "hospice" and "palliative care," a hand search of 22 leading healthcare journals, and discussion with experts in the field. The final articles were chosen based on each study's methodological quality, its ability to be applied across different care settings, and its ability to impact clinical practice. We summarize the eight articles that were chosen and identify ways the articles can be used to inform clinical practice.
Family caregivers experience multiple transitions, resolutions, loss, and grief where their search for meaning becomes evident. Spirituality is an important dimension of palliative care, yet little attention has been given to this important aspect of spirituality especially among the family caregivers in a hospice setting. The study aimed to bring the hidden voices of family caregivers, their own spiritual experiences caring for their dying patients in a hospice setting, to guide and direct the care practices of health care professionals. An interpretive descriptive approach guided the study using a purposive sample of 18 family caregivers from a hospice in Karachi, Pakistan. Major themes were family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God’s kindness and grace. Spirituality enabled family caregivers to uncover meaningful engagement and provided strength and peace while serving a dying family member in challenging caregiving situations such as adversity and limited resources. They highly valued the love, respect, and honor of the family; showed compassion; believed in God’s blessings; and experienced spiritual growth and self-transcendence. Spirituality was found to be a major resource of coping among family caregivers. Health care professionals need to integrate spirituality while developing family-centered interventions in hospice care.
Aim: To investigate the association between a hospital palliative care unit assessment and hospital outcome.
Methods: This was a prospective cohort study. Data were assessed from all patients treated and followed by the hospital palliative care team (HPCT) from November 2016 until December 2017.
Results: The mean age of the 588 patients was 73.15±13.6 years. All of the patients included in the study were referred to palliative care. A large proportion of patients were affected by cancer, 69.7% (410), while 30.3% (178) were affected by an advanced chronic illness. The three most frequent cancers were: gastrointestinal (n=81, 19.8%), gynaecological (n=66, 16.1%) and lung (n=63, 15.4%); the three most frequent chronic advanced diseases were: advanced dementia (n=45, 25.3%), severe ischaemic/haemorrhagic stroke (n=36, 20.2%) and severe heart failure (n=25, 15.3%). The majority of patients were in clinical wards (n=476, 81.0%) and the average length of stay was 22.9 days. Hospital outcome trends were evaluated in terms of length of stay and number of deaths that occurred in the hospital. In particular, length of stay decreased from 25.8 days to 18.1 days, hospital death from 13 to 0 during the time that the HPCT assessed patients for an appropriate discharge.
Conclusion: The HPCT is an effective means of managing patients affected by severe illness, reducing the number of deaths that occur within the hospital, long periods of hospitalisation and instances of readmission. However, further studies are required to fully assess the impact of an HPCT on hospital outcomes.
PURPOSE: Although rates of hospice use have increased over time, insurance plan- and racial/ethnic-based disparities in rates have been reported in the USA. We hypothesized that increased rates of hospice use would reduce or eliminate insurance plan-based disparities and that racial/ethnic disparities would be eliminated in managed care (MC) insurance plans.
METHODS: We studied the use of hospice care in the final 30 days of life among 40,184 elderly Texas Medicare beneficiaries who died from primary breast, colorectal, lung, pancreas, or prostate cancer between January 1, 2007 and December 31, 2013, using statewide Medicare claims linked to cancer registry data. Rates of hospice use were computed by race/ethnicity and insurance plan (MC or fee-for-service (FFS)). We used logistic regression to account for the impact of confounding factors.
RESULTS: Rates of hospice use increased significantly over time, from 68.9% in 2007 to 76.1% in 2013. By 2013, differences in hospice use rates between MC and FFS plans had been reduced from 10% to < 5%. However, after accounting for insurance plan and confounding factors, racial/ethnic minority beneficiaries' hospice use was significantly lower than non-Hispanic white beneficiaries' (p < 0.0001). This disparity was observed among both FFS and MC beneficiaries.
CONCLUSIONS: Hospice use in the final 30 days of life has increased among elderly cancer patients in Texas, virtually eliminating the difference between FFS and MC insurance plans. Despite these positive trends, racial/ethnic-based disparities persist. These disparities are not explained by confounding factors. Future research should address social and behavioral influences on end-of-life decisions.