PURPOSE: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care.
METHODS: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death.
RESULTS: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life.
CONCLUSION: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life.
BACKGROUND/OBJECTIVES: To describe the use of home-based medical care (HBMC) among Medicaid beneficiaries.
DESIGN: A systematic review of the peer-reviewed and gray literature of home-based primary care and palliative care programs among Medicaid beneficiaries including dual eligibles.
SETTING: HBMC including home-based primary care and palliative care programs.
PARTICIPANTS Studies describing Medicaid beneficiaries receiving HBMC.
MEASUREMENTS: Three groups of studies were included: those focused on HBMC specifically for Medicaid beneficiaries, studies that described the proportion of Medicaid patients receiving HBMC, and those that used Medicaid status as a dependent variable in studying HBMC.
RESULTS: The peer-reviewed and gray literature searches revealed 574 unique studies of which only 16 met inclusion criteria. Few publications described HBMC as an integral care delivery model for Medicaid programs. Data from the programs described suggest the use of HBMC for Medicaid beneficiaries can reduce healthcare costs. The addition of social supports to HBMC appears to convey additional savings and benefits.
CONCLUSION: This systematic literature review highlights the relative dearth of literature regarding the use and impact of HBMC in the Medicaid population. HBMC has great potential to reduce Medicaid costs, and innovative programs combining HBMC with social support systems need to be tested.
In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as ‘dignity work’. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under-utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying.
This study aimed to investigate actual situations of nursing activities in supporting the transition to homecare settings for end-stage cancer patients and to determine factors related to executing such nursing activities from the perspectives of communication skills and interprofessional collaboration. A cross-sectional study was conducted with 513 nurses who worked at designated cancer care hospitals in Japan. A total of 318 valid responses were obtained (valid response rate: 62.0%). Scores for nursing activities were higher for the following items: sharing information regarding the transition to homecare settings, intentionally engaging with patients after their medical conditions were explained, providing care for families, and understanding a patient's will about the transition to homecare settings. On the other hand, scores were lower for items that were related to guiding juniors and self-improvement. A multiple regression analysis was performed with nursing activities as the dependent variable. 8 factors related to nursing activities were determined: experience in supporting the transition to homecare settings as a primary nurse, contribution to a team (Team Approach Assessment Scale [TAAS]), years of nursing experience, function of a team (TAAS), regulation of interpersonal relationship (ENDCOREs communication skills scale), experience of participation in homecare nursing education or seminars, verbal communication skills for good communication (End-of-life Care Nurses’ Communication Skills scale), and educational background. Future challenges include developing an educational program based on the results of the present study and promoting educational intervention studies.
Background: Catheter-related bloodstream infections (CRBSIs) constitute a major complication associated with the use of central venous lines (CVL). The aim of this study was to investigate the incidence proportion and risk factors of CRSBI in palliative care patients with CVL receiving home parenteral nutrition (HPN).
Methods: Medical records from patients admitted to a medical home care unit in stockholm, Sweden, during 2017 were reviewed (n=1022) and 454 palliative care patients with a CVL were identified. Data on CRBSI cases, HPN exposure time, type of parenteral nutrition (PN), age, diagnosis and type of CVL were collected.
Results: Twenty-nine of 143 patients receiving HPN through a CVL were diagnosed with a CRBSI (20%). Nine of 311 patients with CVL without exposure for HPN developed CRBSI (3%). The risk of a CRBSI was significantly higher in patients receiving HPN compared with those not receiving HPN, OR 8.5 (95% CI 4.0 to 18.7). For those receiving HPN six to seven times a week the risk was even higher, OR 13 (95% CI 5.1 to 30.3). The highest incidence proportion of CRBSI (31%) was found in a home care team where patients had been trained to disconnect themselves from the PN drip. Sex, cancer versus non-cancer, type of CVL or protein content in the PN, did not differ between patients that developed CRBSI versus those that did not develop the outcome.
Conclusion: HPN entails a high risk of CRBSI. A high frequency of PN and incautious handling of the disconnection of the drip, seem to be the most important risk factors.
PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home.
ELIGIBILITY CRITERIA: A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000 and 2018. Eligibility criteria included papers reporting children's EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals' experiences of delivering this care.
SAMPLE: Twenty-three papers met the eligibility criteria and were included in the review.
RESULTS: Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist pediatric palliative care knowledge is an essential aspect of any model of home-based EOL care.
DISCUSSION AND APPLICATION TO PRACTICE: This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families.
Adequate interprofessional collaboration is essential to provide high quality palliative dementia care across different settings. Within interprofessional collaboration, nurses are the frontline healthcare professionals (HCPs), who interact closely with people with dementia, their loved ones, and other HCPs. A survey was conducted to explore the needs of nurses regarding interprofessional collaboration in home care (HC) organisations, nursing homes (NHs) and during NH admissions. The survey identified the perceived quality of and preferred needs regarding interprofessional collaboration. In total, 384 participants (53.9% home care nurses) completed the survey. The most frequently reported collaboration needs in HC organisations and NH were optimal communication content e.g. information transfer and short communication lines (being able to easily contact other disciplines), and coordination e.g. one contact person, and clear task division and responsibilities). During NH admissions, it was important to create transparency about agreements concerning end-of-life wishes, optimize nurse-to-nurse handover during NH admissions (through performing visits prior to admissions, and receiving practical information on how to guide relatives), and improve coordination (e.g. one contact person). In conclusion, the key collaboration needs were organising central coordination, establishing optimal communication, and creating transparency on end-of-life care agreements.
Background: Advance care planning (ACP) among frail, older adults receiving in-home care is low. Leveraging case managers to introduce ACP may increase engagement.
Objective: Pilot an ACP-Toolkit for case managers and their clients.
Design: Feasibility pilot of an ACP-Toolkit for case managers to introduce ACP and the PREPAREforYourCare.org website and advance directives.
Setting/Subjects: Case managers from four local aging service organizations who referred English-speaking clients =55 years old.
Measurements: Using validated surveys (five-point Likert scales), we assessed changes in case managers' attitudes, confidence, and readiness to facilitate ACP and clients' readiness to engage in ACP from baseline to follow-up (one-week) using Wilcoxon signed-rank tests.
Results: We enrolled 9 case managers and 12 clients (median age 69 [standard deviation 8], 75% minority race/ethnicity). At follow-up, case managers' confidence increased (3.2 [0.7] to 4.2 [0.7]; p = 0.02), and clients' readiness increased (2.8 [1.5] to 3.4 [1.4]; p = 0.06). All case managers agreed the Toolkit was easy to use, helped start ACP conversations, and would recommend it to others. All clients found the Toolkit easy to understand and were comfortable with case managers using it. Nearly all clients (92%) would recommend it to others. Suggestions for improvement included offering the Toolkit in other languages and disseminating it in clinical and community settings.
Conclusions: The ACP-Toolkit resulted in higher case manager confidence in facilitating ACP and client readiness to engage in ACP, and usability was high. A brief ACP-Toolkit may be a feasible solution to increase ACP engagement among frail, older adults receiving in-home care.
Objectives: In an ageing society, community-based medical education in a home care setting needs to be developed. Drawing on Kolb's experiential learning theory, this study aimed to explore the learning processes in overnight home care by medical trainees in terms of their understanding of terminally ill patients and their conceptualization of themselves as future physicians.
Methods: An overnight home care program in which a trainee had to take care of terminally ill patients on his/her own under the supervision of a healthcare team was conducted. Nineteen trainees, including eight medical students and 11 residents, participated in this study. Text data of reflective reports written after the overnight care were collected and thematically analyzed.
Results: The trainees' learning experiences in the program were categorized into four stages: predeparture, concrete experience, reflective observation and abstract conceptualization. Although they had mixed feelings, including anxiety, fear and expectations, at the predeparture stage, they could be actively involved in providing medical care and daily life support and in taking care of dying patients at the patients' homes overnight. By reflecting on their experiences, they gained a sense of achievement and identified the aspects upon which they should improve as future physicians. Subsequently, based on their reflective observation, they conceptualized their approaches to home care and the roles/responsibilities of physicians as healers, which led to professional identity formation.
Conclusions: Overnight home care by medical trainees has the potential as an educational strategy to promote their realistic understanding of home care and facilitate professional identity formation.
Objective: The aim of this study was to examine the effectiveness and efficiency of interprofessional case conferences on home-based end-of-life care to bridge perceptions gaps regarding ethical dilemmas among different healthcare professionals and analyze essential issues extracted the interprofessional discussions.
Patients and Methods: The participants could spend only a limited amount of time after their working hours. Therefore, we shortened and simplified each of three case scenarios so that the discussions do not last longer than 90 minutes. For the case conferences, we selected 3 cases, which entailed the following ethical dilemmas pertaining to home-based end-of-life care: refusal of hospital admission, passive euthanasia, and emergency transport. Participant responses were audio-recorded, transcribed, and analyzed using qualitative content analysis and Jonsen's four topics approach.
Results: A total of 136 healthcare professionals (11 physicians, 35 nurses, and 90 care workers) participated in the case conferences. The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts. Despite the short duration of each case conference (90 minutes), the participants were able to discuss a wide range of medical ethical issues that were related to the provision of appropriate home-based end-of-life care to older adults. These issues included discrimination against older adults (ageism), self-determination, an unmet desire for caregiver-patient communication, insufficient end-of-life care skills and education, healthcare costs, and legal issues.
Conclusion: The physicians, nurses, and care workers differed in their perceptions of and attitudes toward each case, but there were no interprofessional conflicts.
OBJECTIVE: The evidence base for home parenteral nutrition (HPN) in patients with advanced cancer is lacking. To compare the survival of malnourished patients with cancer undergoing palliative care who received HPN with a homogeneous group of patients, equally eligible for HPN, who did not receive HPN.
DESIGN: Prospective, cohort study; tertiary university hospital, home care, hospice.
METHODS: Patients were assessed for HPN eligibility according to the guidelines. In the eligible population, who received both HPN and chemotherapy was excluded, while who received only HPN was included in the HPN+ group and who received neither HPN nor chemotherapy but artificial hydration (AH) was included in the HPN- group.
RESULTS: 301 patients were assessed for HPN eligibility and 86 patients (28.6%) were excluded for having severe organ dysfunction or Karnofsky performance status <50. In outcome analysis, 90 patients (29.9%) were excluded for receiving both HPN and chemotherapy, while 125 (41.5%) were included, 89 in HPN+ group (29.5%) and 36 in HPN- group (12%). The survival of the two groups showed a significant difference favouring patients receiving HPN (median overall survival: 4.3 vs 1.5 months, p<0.001). The multivariate analysis of the risk factors for mortality showed that not receiving HPN accounted for the strongest one (HR 25.72, 95% CI 13·65 to 48.44).
CONCLUSIONS: Comparative survival associated with the use of HPN versus AH showed significantly longer survival in malnourished patients with advanced cancer receiving HPN. These data support the guideline recommendation that HPN should be considered when malnutrition represents the overriding threat for the survival of these patients.
BACKGROUND: Process evaluation addresses the implementation, mechanisms of impact, and context of participants in complex interventions. The STADPLAN study assesses the effects of conversations on advance care planning (ACP) led by trained nurse facilitators. The complex intervention consists of several components that may lead to various changes in attitude and behavior regarding personal ACP activities. With the process evaluation, we aim to assess how changes were achieved in the STADPLAN intervention.
METHODS: The planned process evaluation study will be conducted alongside a cluster-randomized controlled trial on ACP in home care services (HCS). Trained nurse facilitators will deliver the ACP intervention consisting of an information brochure and two ACP conversations. A logic model depicts the assumed change processes of the intervention: the educational program enables nurses to conduct ACP conversations with patients and their caregivers. Patients gain knowledge and reflect upon and engage in their own ACP. Caregivers better understand patients' wishes and feel reassured in their role as surrogates. Designation of a surrogate and communication on ACP are facilitated. We will assess the effects of the educational program with questionnaires and a focus group including all participating nurses. We will measure ACP engagement, and prevalence of advance directives in patients, and ask for their experiences with the intervention. We will conduct semi-structured interviews with caregivers about their expectations and experiences regarding ACP in general and the intervention. We will address context factors, e.g., basic characteristics of the HCS (such as ownership, number of clients, staff and qualification). Analysis will be based upon the logic model, integrating qualitative and quantitative data.
DISCUSSION: The comprehensive process evaluation will provide essential information on the feasibility of implementation strategies and the clinical relevance of a nurse-led ACP intervention in home care recipients and its generalizability and transferability to other settings.
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.