Lorsqu’un jeune étudiant en médecine décide de vivre, de l’intérieur, les joies et les peines d’un service de soins palliatifs, il fait un choix difficile. À distance de l’impératif thérapeutique, partant à la découverte des aspérités d’une humanité en suspens, Amaury Cinquin livre à Laennec une expérience forte. Durant ces semaines, il s’est exercé à l’empathie, a découvert des souffrances apparemment sans issue. Il s’est attaché à comprendre en quoi une certaine organisation institutionnelle permet à tous, soignants et patients, de mieux vivre des situations difficiles. Prenant du recul sur ses études et sa future pratique, il a quitté la Maison Jeanne-Garnier avec un autre regard sur la mort.
Purpose: Physical activity (PA) is increasingly being used in hospice care as a rehabilitation strategy to help patients manage symptoms and improve quality of life. However, little is known about how to design and deliver interventions that promote uptake and maintenance of PA in this population. Single-level approaches (i.e., psychological models) have primarily been used to study factors that influence PA engagement among patients with advanced, incurable disease and therefore offer a limited perspective on strategies that target changes beyond the individual level. This study explored perspectives on factors perceived important for influencing PA participation in hospice care using a social-ecological framework.
Method: Patients (n = 27) and health providers (n = 5) from multiple hospices (n = 5) across the UK were involved in this study. Data were collected using focus group and individual semi-structured interviews and analyzed using a thematic framework approach.
Results: Eight main themes were perceived to be important for influencing PA engagement at the individual, interpersonal, physical environment, community, and policy levels including: (1) PA as therapy; (2) apprehension about PA-induced harm; (3) group-based PA with peers; (4) supervised PA sessions; (5) limited facilities and access; (6) patient-centered approach; (7) lack of a strong PA culture and; (8) absence of a policy and guidance for PA provision.
onclusion: Hospice-based PA interventions that target multiple levels simultaneously may be more effective at successfully changing and sustaining patients' PA behavior. Study findings provide evidence-based recommendations that may facilitate the effective delivery of PA interventions in hospice care.
Objectives: To explore acceptability, tolerability, and subjective experience of virtual reality (VR) as therapeutic recreation for hospice patients living with dementia (hPLWD).
Design: Descriptive study setting.
Community Hospice Agency Participants: A convenience sample of n = 25 hPLWD cared for by a local hospice agency.
Intervention: Participants viewed a beach scene using VR headset for =30 minutes.
Measurements: Tolerability was measured with Pain Assessment IN Advanced Dementia (PAINAD) scores at baseline, every 5 minutes during VR use, and 5 minutes after headset removal. Additionally, follow-up phone calls to caregivers several hours after the intervention were performed to inquire regarding any noted adverse effect after the intervention. The subjective experience was measured with qualitative semistructured interviews with the hPLWD regarding enjoyment for the VR. Descriptive statistics were performed on all collected data.
Results: The VR was stopped early in 2 of the participants due to a =2-point increase in PAINAD score. Baseline behavioral and psychological symptoms of dementia (BPSD) were reported to have worsened in 2 (8%) of the participants at follow-up. There was no significant difference between dementia type and usage time or dementia severity and usage time. Of the 25 participants, 14 (56%) reported enjoying VR and 12 (48%) would do it again.
Conclusion: Virtual reality use was generally safe and enjoyable in hPLWD. Virtual reality can provide meaningful activity and enhance quality of life for hPLWD at the end of life. In the future, VR may be a useful intervention for BPSD in hPLWD.
BACKGROUND: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes.
OBJECTIVE: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice.
DESIGN: Qualitative case study, using in-depth interviews and constant comparative method.
SETTING/PATIENTS: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background.
MEASUREMENTS: Themes identified in qualitative in-depth interviews.
RESULTS: Patients rarely refused hospice outright but more often postponed using a "soft no," in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care.
CONCLUSIONS: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.
Studies have shown that registered nurses are inadequately prepared to care for patients requiring hospice and palliative care. Reasons include inadequate curriculum, along with a lack of structured education related to hospice/palliative care and symptom management, which includes inadequate education on delivering home-based hospice/palliative case management. Challenges at the Southwestern Hospice Organization are consistent with industry standards, evidenced by a high level of afterhours triage phone calls related to ineffective case management setup and delivery upon patient admission to hospice service. Many of these triage inquires could be prevented with improved registered nurse case management education and subsequent execution. Through analyzing Southwestern Hospice Organization afterhours triage phone data, a deficiency in effective patient case management setup and delivery was defined. Best practices in hospice/palliative case management were then identified, and a quality improvement plan in the form of a nurse driven, hands-on, home hospice/palliative case management simulation was generated. Quality improvement for patient case management at the Southwestern Hospice Organization was the end goal.
Leading highly functional health care teams in all practice settings is sustained through the identification of a conceptual framework to guide education and practice. This article presents an interdisciplinary framework for palliative and hospice education and practice. The framework builds on theoretical caring to convey elements of relational, holistic and compassion; articulates interprofessional tenets for guiding values; and aligns with constructs for palliative and hospice best practices. The framework invites those at the bedside and in leadership to be intentional in attending to education and the necessary activities that address the day-to-day operations of palliative and hospice care, as well as, honoring all interdisciplinary collaboration that supports quality outcomes and inspires actions that transform.
This study was designed to promote enhanced self-efficacy and decreased stress levels for family caregivers at a hospice care hospital, thus increasing their quality of life. This is achieved through group flower arranging sessions. The objectives are to (a) enhance self-efficacy scores for family caregivers of Calvary patients, (b) decrease stress levels for family caregivers of Calvary patients, and (c) disseminate results to other hospices. The results show that the flower arranging sessions resulted in significantly increased self-efficacy and decreased stress and associated problems for the caregiver participants. Implications and suggestions for future research are discussed.
Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.
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.
Context: Patients with blood cancers have low rates of timely hospice use. Barriers to hospice use for this population are not well understood. Lack of transfusion access in most hospice settings is posited as a potential reason for low and late enrollment rates.
Objectives: We explored the perspectives of blood cancer patients and their bereaved caregivers regarding the value of hospice services and transfusions.
Methods: Between June 2018 and January 2019, we conducted three focus groups with blood cancer patients with an estimated life expectancy = 6 months and two focus groups with bereaved caregivers of blood cancer patients. We asked participants their perspectives regarding quality of life (QOL) and about the potential association of traditional hospice services and transfusions with QOL. A hematologic oncologist, sociologist, and qualitatively-trained research assistant conducted thematic analysis of the data.
Results: 27 participants, 18 patients and nine bereaved caregivers, participated in the five focus groups. Participants identified various QOL domains that were important to them but focused largely on a desire for energy to maintain physical/functional wellbeing. Participants considered transfusions a high-priority service for their QOL. They also felt that standard hospice services were important for QOL. Bereaved caregivers reported overall positive experiences with hospice.
Conclusion: Our analysis suggests that although blood cancer patients value hospice services, they also consider transfusions vital to their QOL. Innovative care delivery models that combine the elements of standard hospice services with other patient-valued services like transfusions are most likely to optimize end-of-life care for patients with blood cancers.
This study uses a fuzzy logic and neural network to ascertain how service quality dimensions of the SERVQUAL model (reliability, assurance, empathy, responsiveness, and tangibility) affect overall customer satisfaction. Using a threshold logic unit to produce observation outcomes, the algorithm indicated that while reliability was the crux of the service outcome, peripheral variables (e.g., assurance, empathy, responsiveness, and tangibility) integrated emotions and feelings into the hospice service process which equated to an increased quality of life, a positive disconfirmation of expectations (service expectations were met or exceeded) and a good death experience equating to a positive perception of quality.
Background: Lesbian, gay, bisexual, and transgender (LGBT) patients fear being open about their identities, not receiving equal or safe treatment, and having their family and surrogates disrespected or ignored by providers.
Objective: To examine inadequate, disrespectful, and abusive care to patients and family due to sexual orientation or gender identity.
Design: A cross-sectional study using an online survey.
Setting/Subjects: Home and residential hospice, inpatient palliative care service, and other inpatient and outpatient settings. Subjects were 865 hospice and palliative care providers, including physicians, social workers, nurses, and chaplains.
Measurements: Inadequate, disrespectful, or abusive care to LGBT patients and discriminatory treatment of family and surrogates were measured.
Results: Among respondents, 53.6% thought that lesbian, gay, or bisexual (LGB) patients were more likely than non-LGB patients to experience discrimination at their institution; 23.7% observed discriminatory care; 64.3% reported that transgender patients were more likely than nontransgender patients to experience discrimination; 21.3% observed discrimination to transgender patients; 15% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 14.3% observed the spouse/partner or surrogate being treated disrespectfully.
Conclusions: These findings provide strong evidence that LGBT patients and their families are more likely to receive discriminatory care as compared with those who are not LGBT. Disrespectful care can negatively impact the trust patients have in providers and institutions, and lead to delaying or avoiding care, or not disclosing relevant information. Partners/spouses and surrogates may be treated disrespectfully, have their treatment decisions ignored or minimized, be denied or have limited access to the patient, and be denied private time. Advocacy and staff training should address barriers to delivering respectful and nondiscriminatory care.
Conceptualizations of luxury usually derive from individuals who are agentic and empowered. Building upon the consumer-centered experiential movement, this paper deviates from researching the typical, listening instead to consumer narratives associated with luxury in contexts where agency is transitioning. We revisit notions of sacred and profane within the liminal space of palliative and end-of-life care. Adopting purposeful sampling, and agency enhancing storytelling, pathographies in particular, consumption experiences are narrated by patients, families, and bereaved users (n = 140) of multiple hospices (n = 5) in the UK. Findings shift the evolving consumer centric conceptualization of luxury into conceptions of liminal space, place (hospices as cathedrals), and people (community). A psychosocial narrative emerges which conceptualizes experiences as lived, personalized, integrated, familiar, transformational, hedonic, eudaimonic, and (dis)connected. Our discussion extends notions of the sacred and profane into the mundane and illustrates the ways in which those navigating a liminal space encounter unexpected yet astonishing luxury experiences.
BACKGROUND: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making.
OBJECTIVES: To understand the decisional needs of patients and families making decisions about hospice care.
METHODS: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach.
RESULTS: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for?
DISCUSSION: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.
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.
OBJECTIVES: There has been a recent drive to embed rehabilitation within palliative care. The concept of rehabilitative palliative care has been advocated to help patients preserve function and independence, through greater patient enablement and self-management. Such an approach requires engagement from all members of the palliative care team. There is a lack of understanding of such viewpoints. The objective of this research was to explore hospice-based palliative care professionals' understanding and perceptions of rehabilitation.
METHODS: Qualitative semi-structured interviews were conducted. Eighteen hospice-based healthcare professionals were recruited from a hospice in central Scotland. Interviews were audio-recorded, transcribed and thematically analysed.
RESULTS: Overall, participants clearly articulated the underlying values and benefits of rehabilitative palliative care. Emphasis was placed on ensuring that rehabilitation was appropriately tailored to each individual patient. There was more ambiguity regarding the pragmatic implementation of rehabilitative palliative care, with a number of barriers and facilitators identified.
CONCLUSIONS: The findings suggest that hospice-based palliative care professionals would be receptive to further implementation of rehabilitative palliative care. A lack of conceptual clarity among palliative care professionals may be a barrier to the effective implementation of rehabilitative palliative care. At an organisational level, this would require clarification of the approach, and additional training involving all members of the multidisciplinary team.
OBJECTIVE: The aim of the study is to compare the hope of rural and urban inhabitants in the terminal stage of a neoplastic disease covered by stationary hospice care.
MATERIAL AND METHODS: The study was carried out among patients in the terminal phase of a neoplastic disease. They were patients of both 24-hour and daily palliative and hospice care units throughout the country. The study group consisted of 246 patients, average age - 59.5, the youngest respondent was 18 and the oldest - 90. The B. L. Block (NCN-36) test, prepared for people struggling with serious life-threatening diseases, was used. Comparison of the results with regard to the place of residence was based on the test Friedman ANOVA and Kendall compatibility factor. The general comparison of hope in individual dimensions and globally with the division into the degree of urbanization, was based on the Kruskal-Wallis test.
RESULTS: On the basis of factor analysis, 4 scales constructed from 8 items branch were distinguished. The following scales are used to study hope in the situational dimension - health, the telek-temporal dimension - goals, the spiritual dimension - religious beliefs and in the emotional-affective (affective) dimension - motivations.
CONCLUSIONS: The strength of hope in people in the terminal phase of cancer, residing in villages, settlements, small, medium and large cities, was similar and depended on its magnitude. Of all the manifestations of hope, the greatest variation in results occurred in the subjects when they encountered serious problems and difficulties. The inhabitants of medium-sized cities were characterized by a higher hope at that time.
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.