Home support for patients receiving in-home palliative and end-of-life care (PELC) is greatly dependent on the daily presence of caregivers and their involvement in care delivery. However, the needs of caregivers throughout the care trajectory of a loved one receiving in-home PELC are still relatively unknown.
Objectives and methodology: This descriptive qualitative study focuses on the role of caregivers who have cared for a person receiving in-home PELC with the goal of describing their needs throughout the care trajectory. As part of this process, 20 caregivers took part in semi-directed interviews.
Results and discussion: This study sheds light on the multiple needs of caregivers of loved ones receiving in-home PELC. These informational, emotional, and psychosocial needs show that caregivers experience changes in their relationship with their loved one. Spiritual needs were expressed through the meaning ascribed to the home support experience. And the practical needs expressed by participants highlight the importance of round-the-clock access to PELC services and the essential importance of nursing support.
Conclusion: The needs of caregivers of loved ones receiving in-home PELC are not being met to a satisfactory degree. It is important to consider these needs in the care trajectory, alongside the needs of the patients themselves, in order to improve the support experience leading up to the bereavement period.
Le père d'Olivia, 10 ans, est malade. Atteint d'une maladie neurodégénérative, il ne peut plus monter les escaliers et est installé en bas, jusqu'au moment où il devra être hospitalisé et où il décidera de ne plus lutter. A travers le regard d'Olivia, heureuse d'être entourée de tous les siens et de son chat, entre les larmes et les rires, nous suivons le quotidien de la famille confrontée à la maladie et à la fin de vie.
Background: A decision to refrain from cardiopulmonary resuscitation (CPR) in the case of cardiac arrest is recommended in terminally ill patients to avoid unnecessary suffering at time of death. The aim of this study was to describe the frequency of decisions and documentation of “do not attempt cardiopulmonary resuscitation” (DNACPR) in two Medical Home Care Units in Stockholm. Unit A had written guidelines about how to document CPR-decisions in the medical records, including a requirement for a decision to be taken (CPR: yes/no) while Unit B had no such requirement.
Method: The medical records for all patients in palliative phase of their disease at the two Units were reviewed. Data was collected on documentation of decisions about CPR (yes/no), DNACPR-decisions and documentation regarding whether the patient or next-of-kin had been informed about the DNACPR-decision.
Results: In the two Units, 316 and 219 patients in palliative phase were identified. In Unit A 100% of the patients had a CPR-decision (yes/no) compared to 79% in Unit B (p < 0.001). There was no statistically significant difference in DNACPR-decisions between the two Units, 43 and 37%. Documentation about informing the patient regarding the decision was significantly higher in Unit A, 53% compared to 14% at Unit B (p < 0.001). Documentation about informing the next-of-kin was also significantly higher at Unit A; 42% compared to 6% at Unit B (p < 0.001).
Conclusion: Less than 50% of patients in palliative phase had a decision of DNACPR in two Medical Home Care Units in Stockholm. The presence of written guidelines and a requirement for a CPR-decision did not increase the frequency of DNACPR-decisions but was associated with a higher frequency of documentation of decisions and of information given to both the patients and the next-of-kin.
OBJECTIVES: The aim of this study was to investigate factors predictive for 'death at home' for patients admitted to an advanced medical home care unit in Stockholm, Sweden, with a focus on possible gender differences. In addition, place of death in relation to the patient's wishes was studied.
METHOD: A retrospective review of medical records of all 456 deceased patients, 233 men and 223 women, admitted to the unit during 2017 was performed. Data on age, diagnosis, living conditions, Swedish language skills, desired place of death (if stated) and place of death were retrieved from the patients' charts.
RESULTS: A total of 114 of 456 patients died at home (25%). The probability of 'death at home' was independent of gender, age, diagnosis, living conditions and Swedish language skills. In a binary logistic regression model, the only factor significantly associated with death at home was 'the wish to die at home' (p<0.001). In the study population, 154 patients (34%) had expressed a preferred place of death, 116 (75%) wanted to die at home and 38 (25%) wanted to die in hospice. Of all patients who expressed a preferred place of death, 80% (n=123) had their wishes fulfilled and there were no differences between the sexes.
CONCLUSION: This study indicates equal opportunities regarding the possibility to die at home for patients admitted to advanced medical home care. It emphasises the importance of asking patients where they want to be at the end of life, as it was the foremost prognostic factor for place of death.
Background: Few measures exist to assess the quality of care received by home care clients, especially at the end of life.
Objective: This project examined the rates across a set of quality indicators (QIs) for seriously ill home care clients.
Design: This was a cross-sectional descriptive analysis of secondary data collected using a standardized assessment tool, the Resident Assessment Instrument for Home Care (RAI-HC).
Setting/Subjects: The sample included RAI-HC data for 66,787 unique clients collected between January 2006 and March 2018 in six provinces. Individuals were defined as being seriously ill if they experienced a high level of health instability, had a prognosis of less than six months, and/or had palliative care as a goal of care.
Measurements: We compared individuals with cancer (n = 21,119) with those without cancer (n = 47,668) on demographic characteristics, health-related outcomes, and on 11 QIs.
Results: Regardless of diagnosis, home care clients experienced high rates (i.e., poor performance) on several QIs, namely the prevalence of falls (cancer = 42.4%; noncancer = 55%), daily pain (cancer = 48.3%; noncancer = 43.2%), and hospital admissions (cancer = 48%; noncancer = 46.6%). The QI rates were significantly lower (i.e., better performance) for the cancer group for three out of the 11 QIs: falls (absolute standardized difference [SD] = 0.25), caregiver distress (SD = 0.28), and delirium (SD = 0.23).
Conclusions: On several potential QIs, seriously ill home care clients experience high rates, pointing to potential areas for quality improvement across Canada.
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.
OBJECTIVES: As the US population ages and healthcare reimbursement shifts, identifying new patient-centred, cost-effective models to address acute medical needs will become increasingly important. This study examined whether community paramedics can evaluate and treat, under the direction of a credentialed physician, high acuity medical conditions in the home within an advanced illness management (AIM) practice.
METHODS: A prospective observational study of an urban/suburban community paramedicine (CP) programme, with responses initiated based on AIM-practice protocols and triaged prior to dispatch using the Advanced Medical Priority Dispatch System (AMPDS). Primary outcome was association between AMPDS acuity levels and emergency department (ED) transport rates. Secondary outcomes were ED presentations at 24 and 48 hours post-visit, and patient/caregiver survey results.
RESULTS: 1159 individuals received 2378 CP responses over 4 years. Average age was 86 years; dementia, heart failure and asthma/chronic obstructive pulmonary disease were prevalent. Using AMPDS, most common reasons for dispatch included 'breathing problems' (28.2%), 'sick person' (26.5%) and 'falls' (13.1%). High acuity responses were most prevalent. 17.9% of all responses and 21.0% of high acuity responses resulted in ED transport. Within 48 hours of the visit, only 5.7% of the high acuity responses not initially transported were transported to the ED. Patient/caregiver satisfaction rates were high.
CONCLUSION: Community paramedics, operating within an AIM programme, can evaluate and treat a range of conditions, including high acuity conditions, in the home that would typically result in ED transport in a conventional 911 system. This model may provide an effective means for avoiding hospital-based care, allowing older adults to age in place.
OBJECTIVE: To identify factors related to decisional conflict among surrogate decision makers for home medical care (HMC) patients.
DESIGN: Prospective Cohort Study.
SETTING/SUBJECTS: For older patients receiving HMC from four different primary care clinics in Japan from January 2016 to June 2017, we studied the family member with the main potential for surrogate decision making.
MEASUREMENTS: At the baseline, surrogates filled out a baseline questionnaire on their characteristics and decision readiness, while the attending doctors provided information about the patients' characteristics. Patient-and-surrogate pairs were tracked for up to six months after the baseline or for three months in the case of death, hospitalization, or admittance to a nursing home. After this tracking, surrogates filled out a follow-up questionnaire on their decision-making experiences, including decisional conflict.
RESULTS: Of the original 159 patient-and-surrogate pairs, 121 (76.1%) responded to the follow-up questionnaire. During the follow-up period, 32 patients (26.4% of the patients followed up) died and 69 (57.0%) experienced decision making. Among surrogates who made decisions, the mean score of decisional conflict was 36.2 (standard deviation 14.7), and 43.5% were above the threshold relating to decision delay. Anticipatory guidance and discussion on the patient's care goals at the beginning of HMC were the two variables significantly associated with less decisional conflict of surrogates.
CONCLUSIONS: Families felt less conflict with surrogate decision making if they had participated in previous discussions with doctors regarding the patients' care goals. Early-stage anticipatory guidance and discussion are a good opportunity for families to prepare for surrogate decision making.
BACKGROUND: Maintaining quality of life including physical functioning is highly prioritized among older cancer patients. Geriatric assessment is a recommended approach to identify patients with increased vulnerability to stressors (frailty). How frailty affects quality of life and physical functioning in older cancer patients has scarcely been investigated.
AIM: Focusing on physical functioning and global quality of life, we investigated whether frailty identified by a geriatric assessment was associated with higher risk of quality-of-life deterioration during cancer treatment and follow-up.
DESIGN: Prospective, observational study. Patients were classified as frail or non-frail by a modified geriatric assessment. Quality of life was measured using the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire at inclusion, 2, 4, 6 and 12 months.
SETTING: Eight Norwegian outpatient cancer clinics.
Patients Patients >=70 years with solid tumours referred for palliative or curative systemic medical cancer treatment.
RESULTS: Among 288 patients included, 140 (49%) were frail and 148 (51%) non-frail. Frail patients consistently reported poorer scores on all functioning and symptom scales. Independent of age, gender and major cancer-related factors, frail patients had significantly poorer physical functioning and global quality of life during follow-up, and opposed to non-frail patients they had both a clinically and statistically significant decline in physical functioning from baseline until 12 months.
CONCLUSIONS: Geriatric assessment identifies frail patients with increased risk of physical decline, poor functioning and high symptom burden during and following cancer treatment. Frail patients should therefore receive early supportive or palliative care.
INTRODUCTION: Data-based research has rarely addressed advance directives (ADs) in community-dwelling Korean cancer survivors. The purpose of this study was to examine the relationship between AD treatment choices and decisional conflicts among low-income, home-based cancer management recipients.
METHOD: This study uses a cross-sectional, correlational design. The cancer survivors completed the questionnaires (Korean-Advance Directive model and Decisional Conflict Scale).
RESULTS: Among the 103 participants (average age 67.92 years), 56.3% had solid cancer. Hospice care was the most desired (68.9%), followed by hemodialysis (18.4%), cardiopulmonary resuscitation/ventilation support (15.5% for each), and chemotherapy (12.6%). Patients who were older, unmarried, unemployed, or underweight/obese; lived alone; or had lower education experienced greater decisional conflicts. In the multivariate analyses, no hospice preference was associated with greater decisional conflicts ( t = -2.63, p = .01).
DISCUSSION: Early integration of AD discussion with the nurse-led, home-based service for this vulnerable population could serve as a liaison for quality and continuity of cancer survivorship care.
INTRODUCTION : L'HAD est l'un des acteurs principaux dans le champ de la prise en charge de patients en fin de vie. Avec plus du quart de son activité consacré aux soins palliatifs, l'HAD est une ressource potentielle pour le domicile, pour les établissements médico-sociaux et sociaux dans le cadre d'un accompagnement de personnes en fin de vie.
MÉTHODES : une étude descriptive rétrospective monocentrique a été effectuée, les dossiers de 130 patients décédés en HAD sur l'année 2016, déclarés en soins palliatifs, ont été analysé.
RÉSULTATS : de la totalité des patients décédés en HAD en 2016,96,3% ont été déclarés en soins palliatifs. La moyenne d'âge est de 78,9 ans, les patients pris en charge pour une pathologie cancéreuse sont plus jeunes avec une moyenne d'âge à 75 ans et les patients décédés dans un contexte de polypathologie sont plus âgé, la moyenne d'âge étant de 89 ans. 23% des séjours sont des séjours très courts.
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OBJECTIFS - Chez les patients en fin de vie ou en soins palliatifs à domicile, la permanence des soins en cas d'urgence reste une difficulté. Encouragées par le plan national pour le développement des soins palliatifs, les fiches SAMU pallia regroupent des informations essentielles concernant le patient et sont transmises au centre 15 de la zone de résidence du patient. Notre étude a pour but d'explorer l'utilisation de la Fiche SAMU pallia en Ille et Vilaine.
MÉTHODE - D'une part, nous avons recueilli et analysé les fiches SAMU pallia ainsi que les appels reçus les concernant au SAMU 35 sur une période de 6 mois. D'autre part, nous avons interrogé par entretiens semi dirigés les acteurs de la fiches SAMU Pallia : régulateurs et médecins rédacteurs.
RÉSULTATS - 173 fiches ont été analysées, permettant une photographie de leur utilisation. 69 appels ont été reçus, et sur 26 appels la fiche SAMU Pallia a participé à la décision du régulateur. Malgré la méconnaissance de l'outil, entraînant un déclenchement souvent tardif, la fiche SAMU pallia est bien acceptée par ses utilisateurs. Elle représente un support de discussion avec les patients et les équipes au sujet de la fin de vie, permettant de rassurer, d'anticiper, d'aider les régulateurs lors des prises de décision. Ces derniers rappellent l'importance de clarifier les propositions de prise en charge en cas d'aggravation.
CONCLUSION - Ces résultats satisfaisants positionnent la fiche SAMU pallia comme un outil supplémentaire dans la permanence des soins chez les patients en soins palliatifs à domicile.
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Dans ce chapitre : - qu'est-ce que l'hospitalisation à domicile ? - HAD et polyhandicap ; - la complémentarité des interventions dans la situation d'HAD ; - le cas particulier de l'HAD lorsque le patient est accueilli en établissement médico-social ; - le rôle de l'HAD et ses effets pour la personne polyhandicapée et son entourage ; - HAD et fin de vie en établissement médico-social ; HAD et approche palliative.
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AIM: To synthesize the evidence relating to the ability of specialist care home support services to prevent the hospital admission of older care home residents, including hospital admission at the end-of-life.
DESIGN: Systematic review and narrative synthesis.
METHODS: Ten electronic databases will be searched from 2010 to 31st December, 2018 using pre-determined search terms. All studies of specialist healthcare services to meet care home residents' physical healthcare needs which provide outcome data on hospital admission or place of death compared with usual care will be included. Two reviewers will independently assess studies' eligibility and methodological quality using the Effective Public Health Practice Project Quality Assessment Tool. Data will be extracted by one reviewer and checked by a second according to pre-determined categories. Data will be synthesized in evidence tables and narrative. Funder: National Institute for Health Research School for Social Care Research, November 2016.
DISCUSSION: Care of older people in care home settings is a key aspect of nursing nationally and internationally. This review will increase understanding of the extent to which different models of specialist healthcare support for care homes are associated with key resident outcomes.
IMPACT: Standard healthcare support for care home residents is often inadequate, resulting in avoidable hospital admissions and lack of resident choice as to place of death. Although a range of specialist healthcare services are emerging, little is known about their relative effectiveness. This paper marshalls evidence of relevance to commissioners investing in healthcare provision to care homes to meet NHS targets.
Introduction: Notre service d’hospitalisation à domicile (HAD) est spécialisé pour les enfants atteints de cancer et possède une activité palliative importante. Cette étude décrit les caractéristiques des patients suivis en fin de vie par l’HAD, afin de comprendre les facteurs pouvant influencer le lieu de décès.
Méthodes: Nous avons mené une étude observationnelle rétrospective monocentrique sur les patients pédiatriques d’onco-hématologie, traités au moins un jour en HAD lors des 3 derniers mois de vie, et décédés entre le 1er juillet 2013 et le 31 décembre 2015. L’analyse statistique était descriptive et analytique.
Résultats: Soixante-quatorze patients suivis en HAD sont décédés au cours de cette période, parmi lesquels 8 ont été exclus. Quarante-trois patients parmi ces 66 (65 %) sont décédés à domicile. Lors des 3 derniers mois de vie, les patients d’oncologie ont moins de jours d’hospitalisation conventionnelle que les patients d’hématologie. L’implication des médecins généralistes, des infirmières libérales et les informations délivrées aux familles étaient plus importantes dans le groupe des patients décédés à domicile. Aucune association significative n’a été retrouvée entre l’âge du patient, sa pathologie, l’éloignement du domicile par rapport à l’hôpital et le lieu de décès.
Conclusion: Notre service d’HAD a une activité majeure en soins palliatifs et un nombre important de patients décède à domicile. Une collaboration efficiente entre l’équipe d’onco-hématologie et le service d’HAD, ainsi qu’entre l’HAD et les soignants libéraux permet d’optimiser les soins palliatifs.
A study of a random sample of adults dying in 1987 is compared with a similar study in 1969 examining peoples' experience of home nursing care during the last twelve months of life. Respondents were 639 relatives and others in the community who knew the circumstances of the people who had died and 92 community nurses (mostly district nurses) who provided care. Both nurses' and relatives' perceptions of the adequacy of care showed little change between the two time points, in spite of less frequent visiting. Changes in the management of patients and their families, towards emphasising the supportive and educational role of nurses, may explain this. However, nurses tended to be less willing to criticize standards achieved when contemplating individual episodes of care with which they had been involved, than when making judgements about the adequacy of the nursing service for the dying in general. Explanations for this are proposed.
Areas of tension in nurses' relationship with general practitioners were evident, particularly over the issue of late referral and control over the prescription of pain relieving drugs. Nurses' information needs at referral were also sometimes not met very fully. The stress involved in this type of work was substantial, and nurses expressed a strong desire to spend more time supporting families emotionally, which was often hampered by late referral, a problem that had increased significantly since 1969.
BACKGROUND: Pain is a common and distressing symptom in people with cancer, but is under-recognised and under-treated. Australian guidelines for 'Cancer Pain Management in Adults' are available on the Cancer Council Australia Cancer Guideline Wiki. This study aims to evaluate the effectiveness and cost-effectiveness of a suite of guideline implementation strategies for improving pain outcomes in adults with cancer in oncology and palliative care outpatient settings.
METHODS: The study will use a stepped-wedge cluster randomised controlled design, with oncology and palliative care outpatient services as the clusters. Patients will be eligible if they are adults with cancer and pain presenting to participating services during the study period. During an initial control arm, services will routinely screen patients for average and worst pain over the past 24 h using a 0–10 numerical rating scale (NRS) and have unfettered access to online guidelines. During the intervention arm, staff at each service will be encouraged to use: 1) a patient education booklet and self-management resource; 2) an online spaced learning cancer pain education module for clinicians from different disciplines; and 3) audit and feedback of service performance on key indices of cancer pain screening, assessment and management. Service-based clinical change champions will lead implementation of these strategies.
The trial’s primary outcome will be the probability that patients initially screened as having moderate-severe (=5/10 NRS) worst pain experience a clinically important improvement one week later, defined as = 30% reduction. Secondary outcomes will include patient empowerment and quality of life, carer experience, and cost-effectiveness. For the main analysis, linear mixed models will be used, accounting for clustering and the longitudinal design. Eighty-two patients per service at six services (N = 492) will provide > 90% power. A qualitative sub-study and analyses of structural and process factors will explore opportunities for further refinement and tailoring of the intervention.
DISCUSSION: This pragmatic trial will inform implementation of guidelines across a range of oncology and palliative care outpatient service contexts. If found effective, the implementation strategies will be made freely available on the Wiki alongside the guidelines.