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: 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.
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.
Aggressive resource utilization for patients with cancer at the end of life has been associated with poor outcomes for patients and their families. To our knowledge, no previous studies have characterized resource utilization as a proxy for quality end-of-life care in hospitalized patients awaiting discharge to hospice by physician and advanced practice providers (APPs). We conducted a retrospective cohort study to examine resource utilization and the quality metrics for end-of-life care in patients at Memorial Sloan Kettering Cancer Center from the date of hospice decision to discharge. Patients under the care of APP teams were less likely to receive laboratory testing (50% vs 59%, P = .046) and received fewer tests than those with house staff teams, though performance on end-of-life quality metrics was similar. Our findings suggest APPs may improve quality of end-of-life care by avoiding unnecessary or aggressive measures compared to house staff.
OBJECTIVE: To investigate the feasibility of using the Patient Dignity Question (PDQ) in a small rural hospice setting.
DESIGN: Prospective study.
SETTING: The 5-bed Algonquin Grace Hospice in Huntsville, Ont.
PARTICIPANTS: Nineteen patients who met the research criteria and who were admitted to the hospice from September 2015 to December 2016.
METHODS: Participants completed the Patient Dignity Inventory and modified versions of the Edmonton Symptom Assessment Scale and Integrated Palliative Care Outcome Scale before and after the PDQ interviews.
MAIN FINDINGS: While each of the 19 PDQ interviews was unique, there were many consistencies regarding accomplishments (eg, being a good parent), hopes (eg, one's need of being respected), and fears (eg, concerns about pets) that emerged from participants' stories. Hospice staff found the documents from PDQ interviews to be very valuable in their understanding of patients. Staff and patients unanimously wanted the program to continue. An unexpected benefit was the response of the patients' families who were deeply moved by the legacy documents, often sharing them following their family member's death.
CONCLUSION: The PDQ is a dignity-conserving intervention that serves as a meaningful end-of-life legacy document that benefits patients, staff, and families. Using the PDQ at the hospice helped patients feel truly heard, and increased caregivers' compassion and understanding of patients' needs.
Background: To identify the necessary care for dying patients in intensive care units (ICUs), we designed a retrospective study to evaluate the quality of dying and death (QODD) experienced by the surrogates of patients with medical illness who died in the ICU of a tertiary referral hospital.
Methods: To achieve our objective, the authors compared the QODD scores as appraised by the relatives of patients who died of cancer under hospice care with those who died in the ICU. For this study, a Korean version of the QODD questionnaire was developed, and individual interviews were also conducted.
Results: Sixteen people from the intensive care group and 23 people from the hospice care group participated in the survey and completed the questionnaire. The family members of patients who died in the ICU declined participation at a high rate (50%), with the primary reason being to avoid bringing back painful memories (14 people, 87.5%). The relatives of the intensive care group obtained an average total score on the 17-item QODD questionnaire, which was significantly lower than that of the relatives of the hospice group (48.7±15.5 vs. 60.3±14.8, P=0.03).
Conclusions: This work implies that there are unmet needs for the care of dying patients and for the QODD in tertiary hospital ICUs. This result suggests that shared decision making for advance care planning should be encouraged and that education on caring for dying patients should be provided to healthcare professionals to improve the QODD in Korean ICUs.
OBJECTIVES: To determine the satisfaction of relatives of deceased patients with the care received in a palliative care unit (PCU) and compare it with cases in which a team with specific psychological care were not involved.
MATERIAL AND METHODS: An anonymous survey (n=202) was administered to the relatives (response rate, 42.1%), which evaluated 9 issues related to the process of dying and the overall assessment of the care.
RESULTS: The overall satisfaction was high (mean score of 9.22); the score for the full team was 9.40, while that of the team without the psychologist was 8.40 (P=.005). The items that scored highest were "team availability", "information received" and "assistance for facing the disease", followed by "pain control", "peaceful death", "assistance for patient-family communication", "grief support" and "quality of life".
CONCLUSIONS: Based on the relatives' assessment, the hospital PCU teams help increase the quality of care at the end of life.
CONTEXT: Unrelieved cancer pain at the end of life interferes with achieving patient-centered goals.
OBJECTIVE: To compare effects of usual hospice care and PAINRelieveIt® on pain outcomes in patients and their lay caregivers.
METHODS: In a 5-step, stepped wedge randomized, controlled study, 234 patients (49% male, 18% Hispanic, 51% racial minorities) and 231 lay caregivers (26% male, 20% Hispanic, 54% racial minorities) completed pre/post pain measures. They received usual hospice care with intervention components that included a summary of the patient's pain data, decision support for hospice nurses, and multimedia education tailored to the patient's and lay caregiver's misconceptions about pain.
RESULTS: The intervention effect on analgesic adherence (primary outcome) was not significant. Posttest worst pain intensity was significantly higher for the experimental group, but the difference (0.70; CI=[0.12, 1.27]) was not clinically meaningful. There was nearly universal availability of prescriptions for strong opioids and adjuvant analgesics for neuropathic pain in both groups. Lay caregivers' pain misconceptions (0-5 scale) were significantly lower in the experimental group compared to the usual care group (mean difference controlling for baseline is 0.38; CI=[0.08, 0.67]; p=.01).
CONCLUSION: This RCT was a negative trial for the primary study outcomes, but positive for a secondary outcome. The trial is important for clearly demonstrating the feasibility of implementing the innovative set of interventions.
BACKGROUND: We sought to evaluate the effect of an integrated prospective payment program (IPP) on knowledge of hospice care and willingness to participate in hospice care among family members of patients on prolonged mechanical ventilation (PMV).
METHODS: Between November 2013 and April 2014, we used paper-based survey questionnaires from 64 institutions to evaluate knowledge, willingness, and related factors among the main caregivers of patients on PMV regarding hospice care and to determine whether their decisions for the patients were affected by the IPP.
RESULTS: The average ages of the respondents and patients on PMV were 51.9 y and 70.8 y respectively; 70.6% of the respondents knew about the Hospice Palliative Care Act (HPCA), and 42.3% of the medical staff had introduced hospice care-related information to patients and caregivers in Taiwan. Among the caregiver respondents, 67.6% agreed to write a letter of intent regarding the choice of hospice care or limited life-sustaining treatment. In total, 66.2% (16.1 + 50.1%) of the respondents agreed to hospice care for their family members (ie, the patients on PMV) when the condition was terminal. The factors of greater HPCA knowledge among the patients on PMV were IPP participation, female sex, and coma status. Factors leading to higher levels of HPCA knowledge included age = 65 y being married, higher income, awareness of the law, and being introduced to hospice care by medical staff.
CONCLUSIONS: High levels of hospice care knowledge were unrelated to willingness to participate. HPCA knowledge was greater in the IPP group than in the non-IPP group; however, there was no significant difference in the willingness to agree to hospice care. It is recommended that individuals be encouraged to express their medical decisions.
Background: Hospice care is designed for persons in the final phase of a terminal illness. However, hospice care is not used appropriately. Some persons who do not meet the hospice eligibility receive hospice care, while many persons who may have benefitted from hospice care do not receive it. This study aimed to examine the characteristics of, and one-year survivorship among, residents who received hospice care versus those who did not in long-term care facilities (LTCFs) in Canada.
Methods: This retrospective cohort study used linked health administrative data from the Canadian Continuing Reporting System (CCRS) and the Discharge Abstract Database (DAD). All persons who resided in a LTCF and who had a Resident Assessment Instrument Minimum Data Set Version 2.0 (RAI-MDS 2.0) assessment in the CCRS database between Jan. 1st, 2015 and Dec 31st, 2015 were included in this study (N = 185,715). Death records were linked up to Dec 31th, 2016. Univariate, bivariate and multivariate analyses were performed.
Results: The reported hospice care rate in LTCFs is critically low (less than 3%), despite one in five residents dying within 3 months of the assessment. Residents who received hospice care and died within 1 year were found to have more severe and complex health conditions than other residents. Compared to those who did not receive hospice care but died within 1 year, residents who received hospice care and were alive 1 year following the assessment were younger (a mean age of 79.4 [+ 13.5] years vs. 86.5 [+ 9.2] years), more likely to live in an urban LTCF (93.2% vs. 82.6%), had a higher percentage of having a diagnosis of cancer (50.7% vs. 12.9%), had a lower percentage of having a diagnosis of dementia (30.2% vs. 54.5%), and exhibited more severe acute clinical conditions.
Conclusions: The actual use of hospice care among LTCF residents is very poor in Canada. Several factors emerged as potential barriers to hospice use in the LTCF population including ageism, rurality, and a diagnosis of dementia. Improved understanding of hospice use and one-year survivorship may help LTCFs administrators, hospice care providers, and policy makers to improve hospice accessibility in this target group.
Many hospices advertise their services, yet the audience may frown upon the commercialization of death. Because research has ignored the content of hospice advertising, I analyzed quantitatively and qualitatively the content of 105 American television commercials. The hospices used four major solutions to invite positive readings. They narrated hospices as salvation, provided empowerment, represented hospices as quality service, and appealed to positive values, including comfort and support. Consequently, the commercials used affective advertising to create an emotional appeal where hospices appeared as solutions to difficult life situations. Consequently, the commercials represented both dying and hospices as potentially positive, and marketable experiences.
Only 2.3% of patients at a Midwest home healthcare (HH) agency had documented advance directives (ADs), compared with 28% nationally. Of concern, this HH agency lacked standardized procedures for advance care planning (ACP) leading to inadequate staff knowledge regarding end-of-life, avoidable hospital readmissions, and delayed transitions into hospice care. Lack of ADs is directly correlated to higher hospital readmission rates and lower hospice length of stay. The purpose of this initiative was to develop evidence-based procedures using the Respecting Choices ACP model to: 1) educate staff, 2) increase ACP conversations offered and completed among high-risk patients, 3) increase Practitioner Orders for Life-Sustaining Treatment (POLST) rates, 4) reduce 60-day hospital readmissions, and 5) support hospice care admissions. Staff received discipline-specific education on ACP/ADs. The Knowledge-Attitudinal-Experiential Survey on Advance Directives (KAESAD), assessed staff ACP/AD knowledge, confidence, and experiences. Standardized electronic medical record tools were created to track ACP conversations, POLST rates, 60-day hospital readmissions, and hospice admissions. Paired t-test and chi-square analyses compared changes pre- and post implementation. The KAESAD survey was analyzed for 75 staff (100%) and demonstrates improvement in knowledge, confidence, and experiences. Data also demonstrate increases in: ACP offered 6% to 80% (p < .001); ACP conversations completed 4% to 31% (p < .001); POLST rates 26% to 43.6% (p = .059); decreased 60-day hospital readmissions 40% to 20% (p = .025); whereas hospice care admissions was not impacted ranging from 10% to 5.5% (p = .381). Respecting Choices serves as an effective ACP framework to improve ACP conversations, POLST rates, and hospital readmissions.
INTRODUCTION: Minimising bias in randomised controlled trials (RCTs) includes intention-to-treat (ITT) analyses. Hospice/palliative care RCTs are constrained by high attrition unpredictable when consenting, including withdrawals between randomisation and first exposure to the intervention. Such withdrawals may systematically bias findings away from the new intervention being evaluated if they are considered non-responders. This study aimed to quantify this impact within ITT principles.
METHODS: A theoretical model was developed to assess the impact of withdrawals between randomisation and first exposure on i) study power and ii) effect sizes. Ten reported hospice/palliative care studies had power recalculated accounting for such withdrawal.
RESULTS: In the theoretical model, when 5% of withdrawals occurred between randomisation and first exposure to the intervention, change in power was demonstrated in binary outcomes (2.0-2.2%), continuous outcomes (0.8-2.0%) and time-to-event outcomes (1.6-2.0%), and odds ratios were changed by 0.06-0.17. Greater power loss was observed with larger effect sizes. Withdrawal rates were 0.9%-10% in the ten reported RCTs, corresponding to power losses of 0.1%-2.2%. For studies with binary outcomes, withdrawal rates were 0.3-1.2%, changing odds ratios by 0.01-0.22.
DISCUSSION: If blinding is maintained and all interventions are available simultaneously, our model suggests that excluding data from withdrawals between randomisation and first exposure to the intervention minimises one bias. This is the safety population as defined by the International Committee on Harmonisation. When planning for future trials, minimising the time between randomisation and first exposure to the intervention will minimise the problem. Power should be calculated on people who receive the intervention.
With a growing population of transgender-identified elders in the United States, their unique spiritual end-of-life needs are coming to light. This article presents a case study of a hospice volunteer who used skillful means as an artist to help a transgender-identified woman express her spirituality in the last 6 months of her life. After data analysis, 4 themes emerged related to the expression of spirituality by lesbian, gay, bisexual, transgender, and queer (LGBTQ) elders at end of life. The themes that emerged included (1) the human element in advocacy for spiritual care, (2) the importance of safe spaces for reflection and meditation, (3) the importance of skillful means to work with LGBTQ people, and (4) acknowledgement of gender identity as a spiritual need. This case study serves as a springboard to advance research into the end-of-life needs of LGBTQ elders and the ways in which members of the hospice team can support spiritual care and alleviate suffering for this population.
The number of older adults with cancer and the need for palliative care among this population is increasing in the United States. The objective of this systematic review was to synthesize the evidence on the barriers to palliative and hospice care utilization in older adults with cancer. A systematic literature search was conducted using PubMed, CINAHL, PsycINFO, Embase, and Cochrane Library databases (from inception to 2018) in accordance to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Research articles that examined palliative or hospice care utilization in older adults with cancer were included in this review. Fineout-Overholt's Level of Evidence was used for quality appraisal. A total of 19 studies were synthesized in this review. Barriers to palliative and hospice care utilization were categorized into socio-demographic barriers, provider-related barriers, and health insurance-related barriers. Findings revealed that male, racial minority, unmarried individuals, individuals with low socio-economic status or residing in rural areas, and fee-for-service enrollees were less likely to use palliative or hospice care. Lack of communication with care providers is also a barrier of using palliative or hospice care. The factors identified in this review provide guidance on identification of high-risk population and intervention development to facilitate the use of palliative and hospice care in older adults with cancer. Larger prospective studies on this topic are needed to address this critical issue.
CONTEXT: Many jurisdictions around the world have passed medical aid in dying laws allowing competent, eligible individuals facing life-limiting illness to self-administer prescribed medication to control timing of death. These laws do not prevent some patients who are receiving hospice services from dying by suicide without assistance.
OBJECTIVES: To explore hospice professionals' experiences of patients who die by suicide or intentionally hasten death with or without legal assistance in an area where there is legalized medical aid in dying.
METHODS: Semi-structured in-depth qualitative interviews were conducted with twenty-one home hospice professionals (7 nurses, 7 social workers, 4 physicians, 3 chaplains). Thematic analysis was carried out to analyze the data.
RESULTS: Three primary themes were identified from the interviews: 1) dealing with and differentiating between hastened death and suicide, 2) medical aid in dying access and affordability, and 3) how patients have hastened their own deaths. Analysis of these data indicates there are some patients receiving hospice services who die by suicide because they are not eligible for, have no knowledge of, or lack access to legalised medical aid in dying. Hospice professionals do not consistently identify patients' deaths as suicide when they are self-inflicted and sometimes view these deaths as justified.
CONCLUSION: Suicide and hastened deaths continue to be an unexamined cause of death for some home hospice patients who may have requested medical aid in dying. Open communication and increased education and training is needed for palliative care professionals regarding legal options, issues of suicide and suicide assessment.
Il n’est pas facile de rendre compte de ce qu’est réellement Saint-Christopher’s Hospice, ce petit hôpital de soixante-dix lits de la banlieue sud-est de Londres. Comment seulement traduire « hospice » ? L’homonyme français n’a guère de rapport avec le terme anglais. Aussi, quand il faudra employer un terme français, nous parlerons de « Centre Saint-Christophe », étant bien conscients de ne pas traduire l’expression anglaise.
Live discharges from hospice may occur because of patient choice or provider choice. However, when discharges occur before death, patients and families may feel abandoned and left to manage care needs previously provided by hospice. The purpose of this systematic review was to better understand the nature of live discharges, including frequency, patient characteristics, and hospice characteristics. Of 44 studies identified for review, 13 met inclusion criteria and were published between 2008 and 2018. Live discharge rates varied from 5% to 23%. Patients’ prehospice characteristics varied widely based on diagnosis, comorbidities, gender, race, and ethnicity. Hospice characteristics indicated that the likelihood of a live discharge was increased for patients enrolled in for-profit hospices and in rural areas. Only 2 studies captured the patient/family perspective of the live discharge experience, finding that the loss of hospice support was fraught with difficulties. A need for further study of the live discharge experience and the practices of hospices with high live discharge rates was identified.