Specialist Palliative Care Providers Research Articles

A path to recovery for overlooked populations and their unique challenges: integrating rehabilitation in palliative care for patients with substance use disorders.

Palliative care is a growing medical specialty focusing on providing compassionate and holistic management for those facing life-threatening diseases. These patients frequently present with physical, functional, emotional, and psychosocial problems that require comprehensive interdisciplinary management. However, there is a substantial opportunity to improve care for patients in palliative care who also have a substance use disorder (SUD). These opportunities include direct provision of SUD treatments by specialist palliative care providers and the integration of physical medicine and rehabilitation services. The purpose of this article is to examine the misunderstood and underutilized interaction between palliative care and SUDs, as well as describing the unique opportunities provided by physical medicine and rehabilitation providers to achieve a patient's palliative care goals and optimize overall quality of life. Substance Use Disorder is a chronic, often relapsing, illness that is relevant to palliative care practice due to the potential for significant morbidity and mortality through organ failure, chronic infections, and overdose syndromes. In traditional palliative care practice, it has been observed that past or current SUD diagnoses are often left untreated, resulting in increased distress, and exacerbating an already complex medical situation. Furthermore, many of these patients also experience physical, functional, or psychosocial changes that, when left untreated, will worsen distress and quality of life. To provide more comprehensive and successful palliative care for patients with SUD, the authors recommend an increased emphasis on specialist palliative care training in SUD management, proactive integration of rehabilitation services into the palliative care team, and consistent advocacy for these steps in various arenas. Combined, these actions can improve the care team's ability to provide a holistic, patient-centered approach that can have substantial positive outcomes for patients, health systems, and society.

Calling emergency medical services for terminally ill patients: a qualitative study exploring reasons why informal caregivers make the call.

Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services. The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones. This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis. Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate. For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.

Accessibility to specialist palliative care services in Germany: a geographical network analysis.

The need for palliative care will increase over the next years because of the rise in deaths from chronic illness and demographic changes. The provision of specialist palliative care (SPC) in Germany (palliative care units (PCU), specialist palliative home care(SPHC) teams and palliative care advisory(PCA) teams) has been expanded in recent years. Despite the increasing availability, there is still insufficient coverage with long travel times. The aim was to describe the spatial distribution of SPC services in Germany, to calculate the potential accessibility of facilities and to assess potential spatial under-provision. Retrospective cross-sectional study with regional analysis of SPC services in Germany. Addresses of SPC services registered online were geocoded, accessibility and network analyses were conducted, and proportion of the population living up to 60minutes driving time were calculated. A total of 673 facilities were included. Their distribution is heterogeneous with every fourth of the 401 districts (110/401; 27.4%) lacking a SPC service. In half of the area of Germany the existing PCU and SPHC teams are within reach of 30minutes, with nearly 90% of the population living there. Hospitals providing PCA teams can be reached within 30minutes in 17% of the total area with provision for 43% of the population. A high coverage of SPHC teams and PCU indicates a good spatial distribution in Germany but no complete adequate provision of SPC services, especially for PCA teams. There is a persistent need for further implementation of hospital PCA teams.

Availability of palliative specialty care for adults in community oncology: Results from the 2022 NCORP landscape assessment.

e24125 Background: Palliative care promotes timely symptom management, and care planning and improves quality of life in oncology patients. About 60% of community oncology practices sampled in 2015 had outpatient palliative care. This study updates estimates of palliative care resources in community oncology. Methods: Questions from the 2022 Landscape Assessment of National Cancer Institute Community Oncology Research Program (NCORP) (funding provided by 2UG1CA189824) assessed the availability of specialist palliative care providers and ancillary care services, including utilization of advanced practice providers (APPs). Descriptive statistics describe availability of providers and services. Multivariable logistic regression was used to identify practice characteristics associated with palliative care specialist availability in 2022. Differences in rates of palliative care specialists, outpatient palliative care, APPs and patient portal use between 2015 and 2022 assessment results were assessed using Chi-Square tests, assuming independent time snapshots of general population characteristics. Results: Most community oncology practices sampled in 2015 had palliative care specialists (76%) and 62% of practices reported having outpatient palliative care. Of the 259 non-pediatric exclusive NCORP practice groups included in the 2022 analyses (Table 1), significantly more had palliative care specialists (86%; p = 0.003) and offered palliative care in the outpatient setting (76%; p = 0.001). Most practices utilized APPs (92%) and had a patient portal (95%), while only 41% had a survivorship clinic. Multivariable analyses demonstrated practices with more adult oncology providers (OR = 1.03, p = 0.039) and those with a designated survivorship clinic (OR = 3.16, p = 0.001), were significantly more likely to have specialty palliative care in the outpatient setting. Conclusions: More practices reported availability of palliative care specialists and outpatient services in community oncology practices in 2022 compared to 2015, with more oncology providers being associated with increased odds of having outpatient specialty palliative care in 2022. Smaller community oncology practices with fewer providers may need support to expand their capacity to provide palliative care. [Table: see text]

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey

Background: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. Aim: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. Design: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. Setting/participants: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. Results: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. Conclusion: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

Incentives for Palliative Care.

The past 25 years have proved that palliative care is effective in improving care of seriously ill patients. Research attention must pivot to focus on policy changes and systems and models of care that ensure easy access to quality palliative care to all patients who need it. Education, alone, has not worked. Leaving it to individual organizations to decide has not worked. The question of whether incentives should be used has arisen. Should we design treatment algorithms, such as for cardiopulmonary resuscitation, where palliative care is part of standard care and requires an "opt out"? Should payers pay more to health care organizations who demonstrate they provide universal access to palliative care and how can we control for unintended consequences? Should provision of specialist palliative care be required for a health care organization to be accredited? How can we advance the state of the science and best support the workforce?

Exploring Health Care Providers' Experiences of Providing Collaborative Palliative Care for Patients With Advanced Heart Failure At Home: A Qualitative Study.

BackgroundThe HeartFull Collaborative is a regionally organized model of care which involves specialist palliative care and cardiology health care providers (HCPs) in a collaborative, home‐based palliative care approach for patients with advanced heart failure (AHF). We evaluated HCP perspectives of barriers and facilitators to providing coordinated palliative care for patients with AHF at home.Methods and ResultsWe conducted a qualitative study with 17 HCPs (11 palliative care and 6 cardiology) who were involved in the HeartFull Collaborative from April 2013 to March 2020. Individual, semi‐structured interviews were held with each practitioner from November 2019 to March 2020. We used an interpretivist and inductive thematic analysis approach. We identified facilitators at 2 levels: (1) individual HCP level (on‐going professional education to expand competency) and (2) interpersonal level (shared care between specialties, effective communication within the care team). Ongoing barriers were identified at 2 levels: (1) individual HCP level (e.g. apprehension of cardiology practitioners to introduce palliative care) and (2) system level (e.g. lack of availability of personal support worker hours).ConclusionsOur results suggest that a collaborative shared model of care delivery between palliative care and cardiology improves knowledge exchange, collaboration and communication between specialties, and leads to more comprehensive patient care. Addressing ongoing barriers will help improve care delivery. Findings emphasize the acceptability of the program from a provider perspective, which is encouraging for future implementation. Further research is needed to improve prognostication, assess patient and caregiver perspectives regarding this model of care, and assess the economic feasibility and impact of this model of care.

David Oliver: A new legal duty to provide specialist palliative care.

David Oliver: A new legal duty to provide specialist palliative care.

Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists.

AimTo explore perspectives of Mesothelioma UK clinical nurse specialists (CNSs) on their role in providing palliative care for patients with mesothelioma and their families.DesignA qualitative descriptive approach using focus group and interview methods.MethodsFocus groups and semi‐structured interviews were conducted with 16 Mesothelioma UK clinical nurse specialists using the online software Google Meet. Data collection was carried out in Jan‐Feb 2021 and data were analysed using thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was used as the reporting guideline for this paper.ResultsFour main themes were identified from the data: Mesothelioma UK clinical nurse specialist role in relation to palliative care; joint working with specialist palliative care and community services; patients and family carer's willingness to engage with palliative care services; and the impact of COVID‐19 on palliative care for mesothelioma patients.ConclusionThis study provides valuable insights into palliative care needs in mesothelioma. Patients with mesothelioma and their families have significant palliative care needs throughout the course of their illness from diagnosis to the end of life. Mesothelioma UK CNS's play a crucial role in supporting patients' and families palliative care needs, and are highly skilled in providing this care.ImpactBy acknowledging the role of Mesothelioma UK CNS's in palliative care provision, and supporting collaborative working between specialist and generalist palliative care providers, there is the capacity to significantly improve palliative care in mesothelioma and improve outcomes for patients and their families.

Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study.

SummaryObjectiveTo explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic.DesignQualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis.SettingOrganisations providing specialist palliative services in any setting.ParticipantsStaff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience.Main outcome measuresExperiences of working in palliative care during the COVID-19 pandemic.ResultsFive cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants’ ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a ‘crescendo effect’ in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided ‘moral comfort’ for some.ConclusionsThis study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts.

Hospital-Based Palliative and End-of-Life Care in the COVID-19 Pandemic: A Scoping Review.

Aim: To identify the nature of the evidence reporting hospital-based palliative and end-of-life care during the COVID-19 pandemic. Background: The COVID-19 pandemic has seen an increase in the numbers of seriously ill people being cared for across all health services worldwide. Due to the rapid progression of severe symptoms, the majority of staff working in hospitals and other healthcare centres were providing end-of-life care. Little is known about the level of hospital-based palliative care service provided during the COVID-19 pandemic, particularly during surges in admission rates with an increased number of deaths accruing. Methods: A scoping review was conducted to search and select potential studies. The scoping review was guided by the framework of Arskey and O’Malley and advanced by the use of the methodology of the Joanna Briggs Institute. Results: Eighteen studies published between March 2020 and July 2021 were identified. Three broad categories included overall management strategy and logistics, symptom prevalence and management of patients with COVID-19 and end-of-life care needs within the current pandemic. Conclusions: This review highlights increased awareness and knowledge of palliative and end-of-life care provided in hospitals. The review also highlights the response of hospital-based palliative care teams to an evolving crisis, within the context of developed health systems under sustained and overwhelming pressure. Implications: Newly established clinical links and referral pathways developed during the initial COVID-19 surge between hospital-based palliative care and other healthcare teams, be continued and further enhanced. Understanding of the role of specialist palliative care providers in supporting palliative and end-of-life care within the hospital setting needs further investigation.

Journey mapping as a novel approach to healthcare: a qualitative mixed methods study in palliative care

BackgroundJourney mapping involves the creation of visual narrative timelines depicting the multidimensional relationship between a consumer and a service. The use of journey maps in medical research is a novel and innovative approach to understanding patient healthcare encounters.ObjectivesTo determine possible applications of journey mapping in medical research and the clinical setting. Specialist palliative care services were selected as the model to evaluate this paradigm, as there are numerous evidence gaps and inconsistencies in the delivery of care that may be addressed using this tool.MethodsA purposive convenience sample of specialist palliative care providers from the Supportive and Palliative Care unit of a major Australian tertiary health service were invited to evaluate journey maps illustrating the final year of life of inpatient palliative care patients. Sixteen maps were purposively selected from a sample of 104 consecutive patients. This study utilised a qualitative mixed-methods approach, incorporating a modified Delphi technique and thematic analysis in an online questionnaire.ResultsOur thematic and Delphi analyses were congruent, with consensus findings consistent with emerging themes. Journey maps provided a holistic patient-centred perspective of care that characterised healthcare interactions within a longitudinal trajectory. Through these journey maps, participants were able to identify barriers to effective palliative care and opportunities to improve care delivery by observing patterns of patient function and healthcare encounters over multiple settings.ConclusionsThis unique qualitative study noted many promising applications of the journey mapping suitable for extrapolation outside of the palliative care setting as a review and audit tool, or a mechanism for providing proactive patient-centred care. This is particularly significant as machine learning and big data is increasingly applied to healthcare.

‘Mums are sacred, and mums don’t die’: A mixed-methods study of adult child–parent dyadic relationships at the end of life

Objectives The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types. Design This prospective observational study used an exploratory mixed-methods approach. Participants Patients and caregivers were recruited (Feb. 2018 – Nov. 2019) via general and specialist palliative care providers in Germany. Methods The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy. Findings A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the ‘natural order’. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation. Conclusions This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only. Implications for Psychosocial Providers For both dyads, we recommend psychological counseling to support open communication and understanding between parties.

‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall)

Background: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. Aim: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. Design: Online survey of specialist palliative care providers (CovPall), disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. Setting/participants: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. Results: Four hundred and fifty-eight respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. Conclusions: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called ‘frugal innovations’, in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use. ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225

Preparing nurses for palliative and end of life care: A survey of New Zealand nursing schools

BackgroundNurses play a vital role in the care of people with advanced life-limiting illnesses, so palliative and end of life care is an essential skill nurses need to learn. Despite numerous reports in the international literature about educational developments in this area, there are widespread inconsistencies in undergraduate education, and graduates continue to report feeling unprepared for this part of their work. Little is known about how New Zealand nursing students learn about this important area of clinical practice. ObjectivesTo obtain information about teaching content, organisation, delivery, assessment and clinical learning opportunities in palliative and end of life care in undergraduate nurse education in New Zealand. DesignQuantitative descriptive cross sectional study. SettingsTertiary education institutions that provide the Bachelor of Nursing programme in New Zealand. ParticipantsAcademic leads and course coordinators. MethodsNational online survey. ResultsA total of 13/18 (72%) educational institutions completed the survey. All integrate palliative and end of life care in their teaching with an identified coordinator at 12 (92%) institutions. Between 1 and 10 h of formal teaching is provided at 11 (85%) institutions where lectures and tutorials are most comon. Clinical placements with specialist palliative care providers are scarce and limited to senior students as elective placements. Assessment of student learning in palliative and end of life care is carried out at seven (54%) institutions, and formally evaluated at 12 (92%). Lack of teaching time and clinical placements with palliative care providers are barriers to increased learning opportunities in palliative and end of life care. ConclusionsThis article provides comprehensive information about palliative and end of life care teaching in undergraduate nurse education in New Zealand. Teaching on this subject is not a mandatory requirement so there are inconsistencies in the teaching provided between educational institutions, and significant barriers to development. Mandatory competencies need to be introduced to ensure graduates have the knowledge, skills and attitudes required to provide optimal care for people near the end of life.

Multicenter Evaluation of 434 Hospital Deaths From COVID-19: How Can We Improve End-of-Life Care During a Pandemic?

ContextThe pandemic has substantially increased the workload of hospital palliative care providers, requiring them to be responsive and innovative despite limited information on the specific end of life care needs of patients with COVID-19. Multi-site data detailing clinical characteristics of patient deaths from large populations, managed by specialist and generalist palliative care providers are lacking. ObjectivesTo conduct a large multicenter study examining characteristics of COVID-19 hospital deaths and implications for care. MethodsA multi-center retrospective evaluation examined 434 COVID-19 deaths in 5 hospital trusts over the period March 23, 2020 to May 10, 2020. ResultsEighty three percent of patients were over 70.32% were admitted from care homes. Diagnostic timing indicated over 90% of those who died contracted the virus in the community. Dying was recognized in over 90% of patients, with the possibility of dying being identified less than 48 hours from admission for a third. In over a quarter, death occurred less than 24 hours later. Patients who were recognized to be dying more than 72 hours prior to death were most likely to have access to medication for symptom control. ConclusionThis large multicenter study comprehensively describes COVID-19 deaths throughout the hospital setting. Clinicians are alert to and diagnose dying appropriately in most patients. Outcomes could be improved by advance care planning to establish preferences, including whether hospital admission is desirable, and alongside this, support the prompt use of anticipatory subcutaneous medications and syringe drivers if needed. Finally, rapid discharges and direct hospice admissions could better utilize hospice beds and improve care.

Palliative Care for Patients with End-Stage Liver Disease on the Liver Transplant Waiting List: An International Systematic Review.

People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals' perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients' symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians' lack of clarity on referral criteria and liver transplant patients' concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.

How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers.

Background:More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment.Aim:To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers.Design:Qualitative thematic analysis of semi-structured interviews.Participants:Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto (n = 22) were interviewed in person or by phone. Participants included physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health professionals (n = 4).Results:Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions.Conclusion:Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care.

Providing End-of-Life Care for Patients With Left Ventricular Assist Devices: Experience of a Hospice Agency

ContextPatients with left ventricular assist devices (LVADs) need expert palliative care at the end of life. In the U.S., hospice may provide this care, but few patients enroll, and information about hospice experience with LVAD-implanted patients is limited. ObjectiveTo describe hospice experience with LVAD-implanted patients. MethodsThis is a retrospective descriptive study of all LVAD-implanted patients admitted to a hospice agency. Data were extracted from the electronic health record. ResultsThe 13 patients had a mean age of 63 years (range 20–89) and a mean LVAD duration of 32.5 months (range 8.2–70.0). Hospice diagnosis was heart failure in 10 patients and cancer in three patients; all patients were multimorbid. Eight patients enrolled in hospice on one occasion, four had two enrollments, and one had five. All patients received services for <180 days, three for <7 days, and four patients for >90 days. Just-in-time inservicing was used to prepare hospice teams for challenging care needs, including bleeding, delirium, infections, and mechanical failure. Of the nine patients who died while receiving hospice services, one enrolled with a plan to deactivate the LVAD immediately after hospice enrollment, and six died after discontinuation of the LVAD or other life-sustaining therapy during the course of hospice care. Five deaths occurred in a hospice inpatient unit. ConclusionTo provide specialist palliative care to LVAD-implanted patients, hospices must be prepared to manage complex and highly varied needs. To do this, hospices must have adequate staff support and access to acute care.

Reducing time in acute hospitals: A stepped-wedge randomised control trial of a specialist palliative care intervention in residential care homes

Background: Care home residents are frequently transferred to hospital, rather than provided with appropriate and timely specialist care in the care home. Aim: To determine whether a model of care providing specialist palliative care in care homes, called Specialist Palliative Care Needs Rounds, could reduce length of stay in hospital. Design: Stepped-wedge randomised control trial. The primary outcome was length of stay in acute care (over 24-h duration), with secondary outcomes being the number and cost of hospitalisations. Care homes were randomly assigned to cross over from control to intervention using a random number generator; masking was not possible due to the nature of the intervention. Analyses were by intention to treat. The trial was registered with ANZCTR: ACTRN12617000080325. Data were collected between 1 February 2017 and 30 June 2018. Setting/participants: 1700 residents in 12 Australian care homes for older people. Results: Specialist Palliative Care Needs Rounds led to reduced length of stay in hospital (unadjusted difference: 0.5 days; adjusted difference: 0.22 days with 95% confidence interval: −0.44, −0.01 and p = 0.038). The intervention also provided a clinically significant reduction in the number of hospitalisations by 23%, from 5.6 to 4.3 per facility-month. A conservative estimate of annual net cost-saving from reduced admissions was A$1,759,011 (US$1.3 m; UK£0.98 m). Conclusion: The model of care significantly reduces hospitalisations through provision of outreach by specialist palliative care clinicians. The data offer substantial evidence for Specialist Palliative Care Needs Rounds to reduce hospitalisations in older people approaching end of life, living in care homes.