The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
BACKGROUND: While many Aotearoa/New Zealanders are receiving excellent palliative care the Pacific populations have limited access to available hospice and palliative care services. Little research has been conducted to identify barriers unique to Pacific populations accessing these services. The purpose of this study was to explore key stakeholders' perspectives on the determinants of low access among Pacific populations to these services.
METHODS: Forty-five semi-structured interviews were conducted face-to-face with hospice patients and their families, hospice/health providers and key informants from the Auckland and Wellington region of Aotearoa/New Zealand. The interviews were recorded and transcribed verbatim and a thematic analysis was carried out by identifying, coding and categorising patterns in the data. Identified themes were then discussed further to determine the relevance of the data grouped by theme.
RESULTS: Five interrelated themes affecting access emerged: perception of hospice (often negative) through lack of accurate information, but changing; families' role to look after their own and sick elderly; hospice experiences; continuity of care in the community and the need for information and communication.
CONCLUSION: Hospice and associated palliative care services are under-utilised and commonly misunderstood among Pacific populations in Aotearoa/New Zealand. There is active support following appropriate information received, hence the need for community education and culturally appropriate hospice and palliative services. Inadequate inter-professional communication contributes to polypharmacy and inefficiency in continuity of care across all levels. The Pacific individual is one component of a collective that is critical in major decisions in end-of-life and life changing situations. The findings may guide policies and further research to improve Hospice and Palliative services in Aotearoa/New Zealand.
L’offre de soins à domicile a beaucoup évolué ces vingt dernières années pour répondre aux besoins de la population et pour s’adapter aux contraintes du système de santé. Après les réseaux de santé, les maisons des réseaux, puis les plateformes territoriales d’appui, de nouveaux dispositifs d’aide à la coordination permettent aux soignants du domicile d’organiser la prise en charge des personnes en situation de santé complexe. Illustration avec un réseau de soins palliatifs en Normandie.
Background: Many people with terminal illness prefer to die in home-like settings—including care homes, hospices, or palliative care units—rather than an acute care hospital. Home-based palliative care services can increase the likelihood of death in a community setting, but the provision of these services may increase costs relative to usual care.
Objective: The aim of this study was to estimate the incremental cost per community death for persons enrolled in end-of-life home care in Ontario, Canada, who died between 2011 and 2015.
Methods: Using a population-based cohort of 50,068 older adults, we determined the total cost of care in the last 90 days of life, as well as the incremental cost to achieve an additional community death for persons enrolled in end-of-life home care, in comparison with propensity score–matched individuals under usual care (ie, did not receive home care services in the last 90 days of life).
Results: Recipients of end-of-life home care were nearly 3 times more likely to experience a community death than individuals not receiving home care services, and the incremental cost to achieve an additional community death through the provision of end-of-life home care was CAN$995 (95% confidence interval: -$547 to $2392).
Conclusion: Results suggest that a modest investment in end-of-life home care has the potential to improve the dying experience of community-dwelling older adults by enabling fewer deaths in acute care hospitals.
A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.
BACKGROUND: Many domiciliary care workers have reported low confidence and isolation when delivering end of life care in patients' homes. Project Extension for Community Healthcare Outcomes (ECHO) is an initiative that has demonstrated success in increasing confidence and knowledge of end of life care in UK nursing home and community hospice workers, but it has not been evaluated with domiciliary care workers.
AIM: To test the acceptability of Project ECHO to domiciliary care workers as a means of increasing their knowledge of, and confidence in, delivering palliative care, and its effectiveness in reducing their isolation by developing a community of practice.
METHOD: A service evaluation, involving one domiciliary care agency delivering care in the community, was conducted from May 2018 to April 2019. The participants were 25 home care workers who were employed by the agency. Participants were invited to attend an event at which gaps in their knowledge were identified, and a curriculum of learning on the Project ECHO programme was developed. The learning involved 12 educational sessions over 12 months, with each session teaching a different component of palliative care. Questionnaires were completed by the participants before and after the educational sessions to assess their effect. In addition, a focus group was conducted with four of the participants.
RESULTS: Comparison of the questionnaires completed before and after participating in the education sessions revealed an increase in self-reported knowledge across all 12 topics of the curriculum and an increase in confidence in seven of the 12 topics. However, attendance across the 12 sessions was variable, with no more than nine being attended by any one participant.
CONCLUSION: Palliative care education for domiciliary care staff using ECHO methodology was well received, relevant and accessible, and may have the potential to improve self-assessed knowledge and confidence. However, finding an ideal time for as many staff to attend as possible may be challenging.
Patients with cancer have an increased risk of developing severe forms of coronavirus disease 2019, and patients with advanced cancer who are followed at home represent a particularly frail population. Although with substantial differences, the challenges that cancer care professionals have to face during a pandemic are quite similar to those posed by natural disasters. We have already managed the oncological home care service in L’Aquila (middle Italy) after the 2009 earthquake. With this letter, we want to share the procedures and tools that we have started using at the home care service of the Tuscany Tumor Association during the coronavirus disease 2019 pandemic.
Background: Occupational therapy-based interventions may help people with advanced cancer to live actively despite their illness. However, there is limited evidence concerning what kinds of content intervention should encompass, and how this should be done.
Objective: To describe the development and content of an occupational therapy-based intervention programme for people with advanced cancer living at home.
Material and methods: In the development of the intervention, an evidence synthesis was performed based on a systematic literature search, data from a cross-sectional study, and experiences from an expert panel.
Results: The programme contains six components: 1) An initial interview to select which of the other five components to address, based on the participants’ individual needs. The interview addressed problems and needs of participants in relation to prioritized activities, in order to tailor the following components: 2) prioritisation of resources, energy and everyday activities; 3) adaptation of activities; 4) adaptation of posture and seating; 5) provision of assistive technology; and, 6) modification of the physical home environment.
Conclusion: An occupational therapy-based intervention programme for people with advanced cancer living at home has been developed. The study generates knowledge and insights relevant to improving the treatment of this patient group.
Aim: To pilot test a home end-of-life and palliative care intervention for family caregivers and patients with rare advanced lung diseases and estimate effect-size for the power analysis in a future clinical trial.
Design: This study uses a parallel randomized control trial. Families are randomly assigned to the intervention group or the control group in a 1:1 fashion.
Methods: The study population includes patients with rare advanced lung diseases and their family caregivers who are involved in patients’ home care. The control group receives standard care through their hospital or outpatient clinics. The intervention group receives standard care plus 2-weekly home end-of-life and palliative care coaching by experienced community nurses. Primary outcome is breathlessness measured by shortness of breath scale. Secondary outcomes are: (1) caregivers’ anxiety and depression measures; (2) the presence of patient’s signed advance directives in the medical record or not; and (3) Helpfulness of intervention measured by self-report Helpfulness scale. The study was funded in October 2018 and received ethical Institutional Review Board approval in February 2019.
Discussion: West Virginia has one of the highest incidence rates of lung disease deaths in the nation. However, there is inadequate home end-of-life and palliative care for this underserved population. This is an initial interventional study of nurse-led coaching home-based palliative care for rare advanced lung diseases in rural Appalachia. Developing research collaboration with clinicians is essential for enrollment. Enrollment was successful due to regular meetings with pulmonologists who screened patients per the study inclusion criteria in their specialty clinic and made direct referrals to the research assistants. Results of this study will be used in the future trial.
Impact: The findings will contribute to the evidence-based home nursing care, planning for family/patient preferences and supportive end-of-life palliative care for managing advanced lung diseases at home.
Objectif : Dans le cadre d’un projet de compagnonnage à destination des soignants du domicile, notre Equipe Mobile de Soins Palliatifs a souhaité évaluer leur niveau de qualification en soins palliatifs.
Matériel et méthode : Un QCM de 20 questions a été créé afin d’explorer le niveau de formation, d’expérience et de connaissances en soins palliatifs. Il a été soumis à toutes les infirmières libérales installées sur la communauté de commune du Grand Pontarlier, soit 20 infirmières. Ce travail original a fait l’objet d’un mémoire de DIU soins palliatifs.
Résultats : Le taux de réponse est de 85 %. Le niveau de formation et d’expérience est très faible. Aucune infirmière n’a de diplôme universitaire ou d’expérience en équipe mobile ou unité de soins palliatifs. La prise en charge des symptômes et les lois de soins palliatifs sont peu connues.
Conclusion : La méthode est simple. Elle peut être utilisée par d’autres équipes pour évaluer d’autres professionnels de santé. Ce travail a suscité un vif intérêt de la part des infirmières libérales, sans doute parce que si elles suivent peu de patients en soins palliatifs chaque année, leurs difficultés sont réelles. Ces difficultés, révélées dans d’autres travaux, peuvent être mises en lien avec le faible niveau de formation et d’expérience mis en évidence. Notre travail de formation devra permettre une meilleure qualité de prise en charge du patient.
Pilou, un petit oiseau, vit une vie heureuse dans la ferme, entre ses parents et surtout Paulette, la star de la basse-cour ! Mais voilà, un jour, Paulette tombe malade et c'est toutes les petites habitudes du quotidien qui sont modifiées. C'est que la maladie de Paulette est "trop forte", le docteur ne peut plus la guérir. Face au chagrin de ses proches, Pilou se pose des questions sur la maladie et la mort. Heureusement, toute la basse-cour est là pour accompagner ses derniers jours. Le médecin aide Paulette à mourir sans souffrance grâce à une piqûre. C'est un premier deuil pour Pilou, qui apprendra alors à se souvenir des bons moments pour emporter avec lui "la bonne humeur de Paulette".
Pilou, un petit oiseau, vit une vie heureuse dans la ferme, entre ses parents et surtout Lisette, la star de la basse-cour ! Mais voilà, un jour, Lisette tombe malade et c'est toutes les petites habitudes du quotidien qui sont modifiées. C'est que la maladie de Lisette est "trop forte", le docteur ne peut plus la guérir. Face au chagrin de ses proches, Pilou se pose des questions sur la maladie et la mort. Heureusement, le médecin aide Lisette à ne pas souffrir et toute la basse-cour est là pour accompagner ses derniers jours. C'est un premier deuil pour Pilou, qui apprendra alors à se souvenir des bons moments pour emporter avec lui "la bonne humeur de Lisette".
AIMS AND OBJECTIVES: This study explores everyday life experience of relatives of people with ALS living at home with mechanical ventilation and formal caregivers.
BACKGROUND: ALS is a rapidly progressive disease affecting not only the patient but also close relatives. A burden is placed on relatives affecting their mental and physical health in settings where they provide care. Few studies have examined the everyday life challenges of close relatives with formal caregivers at home and home mechanical ventilation, which often prolongs survival.
DESIGN: We undertook a qualitative study with a phenomenological-hermeneutic approach inspired by Ricoeur. Eleven close relatives were interviewed and the three-level analysis method developed by Dreyer and Pedersen was conducted. The Consolidated Criteria for Reporting Qualitative Research checklist was used.
RESULTS: Four themes were derived from the data during analysis: Vulnerable relatives fighting to keep track of everything, Formal caregivers - a distressing relief, A prison without personal space, and We are in this together until the end.
CONCLUSIONS: Close relatives of persons with ALS are burdened with everyday life challenges despite having formal caregivers at home, and they feel imprisoned. Despite these challenges and concerns about the end of life of their relative, they stay until the end.
RELEVANCE TO CLINICAL PRACTICE: There is clearly a need to investigate interventions in clinical practice supporting close relatives to prepare them for what to expect during a prolonged disease course.
BACKGROUND: It is of great importance to understand how patients and their close relatives experience the pros and cons of advanced home care so as to further develop this quickly growing choice of care.
OBJECTIVE: The aim of this study was to explore the experiences of receiving advanced home care among patients affected by life-threatening illness and their close relatives.
DESIGN: The study was an interview study conducted with patients in their homes. Some patient interviews were conducted together with a close relative participating.
SETTING/PARTICIPANTS: Patients registered in advanced home care in 2017 were offered the opportunity to participate in the study. The selection criteria were that the patient was within grade 3 of the Eastern Cooperative Oncology Group's Performance Status, older than 18 years, able to orient to time and place, and not newly registered.
ANALYSIS: The interviews were recorded and transcribed verbatim and analyzed with qualitative content analysis.
RESULTS: A total of 11 interviews were conducted: 8 with patients and 1 or 2 close relatives together; and 3 with the patient alone. It resulted in 3 main categories: create a safe environment, see the person, and better to manage care at home.
CONCLUSION: The results of this study show that patients and close relatives perceived that advanced home care was a safe and secure form of caring during advanced as well as end-of-life care.
PURPOSE: This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes.
DESIGN: A cross-sectional, descriptive survey design was used.
METHODS: A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open-ended survey questions were investigated using content analysis.
FINDINGS: The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest-ranking needs for support were in dealing with family disagreement in end-of-life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest-ranking form of support was peer-to-peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority.
CONCLUSIONS: Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones.
CLINICAL RELEVANCE: It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home.
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.
BACKGROUND: Despite recommendations to integrate palliative care into nursing home care, little is known about the most effective ways to meet this goal.
OBJECTIVE: To examine the characteristics and effectiveness of nursing home interventions that incorporated multiple palliative care domains (eg, physical aspects of care-symptom management, and ethical aspects-advance care planning).
DESIGN: Systematic review.
METHODS: We searched MEDLINE via PubMed, Embase, CINAHL, and Cochrane Library's CENTRAL from inception through January 2019. We included all randomized and nonrandomized trials that compared palliative care to usual care and an active comparator. We assessed the type of intervention, outcomes, and the risk of bias.
RESULTS: We screened 1167 records for eligibility and included 13 articles. Most interventions focused on staff education and training strategies and on implementing a palliative care team. Many interventions integrated advance care planning initiatives into the intervention. We found that palliative care interventions in nursing homes may enhance palliative care practices, including processes to assess and manage pain and symptoms. However, inconsistent outcomes and high or unclear risk of bias among most studies requires results to be interpreted with caution.
CONCLUSIONS AND IMPLICATIONS: Heterogeneity in methodology, findings, and study bias within the existing literature revealed limited evidence for nursing home palliative care interventions. Findings from a small group of diverse clinical trials suggest that interventions enhanced nursing home palliative care and improved symptom assessment and management processes.
Background: The role of oxygen therapy in end-of-life care for patients with advanced cancer is incompletely understood. We aimed to evaluate the association between oxygen use and survival in patients with advanced cancer and low oxygen saturation in home care.
Methods: We conducted a retrospective cohort study at a primary care practice in suburban Tokyo. Adult patients in home care with advanced cancer demonstrating first low oxygen saturation (less than 90%) detected in home visits were consecutively included in the study. Cox proportional hazards regression was used to investigate the effect of oxygen use on overall survival and survival at home, adjusted for systolic blood pressure, decreased level of consciousness, dyspnea, oral intake, performance status, and cardiopulmonary comorbidity.
Results: Of 433 identified patients with advanced cancer, we enrolled 137 patients (oxygen use, n = 35; no oxygen use, n = 102) who developed low oxygen saturation. In multivariable analysis, the adjusted hazard ratio (HR) of oxygen use was 0.68 (95% confidence interval 0.39–1.17) for death and 0.70 (0.38–1.27) for death at home. In patients with dyspnea, the HR was 0.35 (0.13–0.89) for death and 0.33 (0.11–0.96) for death at home; without dyspnea, it was 1.03 (0.49–2.17) for death and 0.84 (0.36–1.96) for death at home.
Conclusions: Oxygen use was not significantly associated with survival in patients with advanced cancer and low oxygen saturation, after adjusting for potential confounders. It may not be necessary to use oxygen for prolongation of survival in such patients, particularly in those without dyspnea.
The purpose of this article is to describe current evidence-based strategies to manage severe pain in patients living with terminal illnesses. A comprehensive pain assessment is a critical step in the initial development of a pain management plan and for ongoing evaluation of patients' pain. Although we have many effective clinical tools available for pain assessment, they are not always used consistently, which can negatively affect the pain management plan. Home care and hospice nurses need to be consistent in using the tools and documenting the patient's pain level and response to the pain management plan. Patients and caregivers have concerns and fears surrounding medication use, particularly with narcotic analgesics. It is vital that nurses provide thorough patient-centered teaching about medications to help address these concerns. Research has found that nurses who also provided validation to patients and families regarding their concerns, followed by education, were the most effective.
OBJECTIVES: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life.
METHODS: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings.
RESULTS: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and NICE statements presented regarding end-of-life care planning and discussions.
CONCLUSIONS: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity and tensions regarding when these conversations should be initiated and by whom.