Specialist Palliative Care Services Research Articles

How do Patients With Advanced Cancer and Family Caregivers Accommodate One Another in Decision-Making? Findings From a Qualitative Study in Specialist Palliative Care.

Patients with advanced cancer commonly involve family caregivers in decision-making for palliative care. However, how patients with advanced cancer and family caregivers accommodate each other in decision-making is unclear. A qualitative study in advanced cancer was conducted with 14 patients and 19 family caregivers recruited from two hospices comprising a large regional specialist palliative care service in Ireland. Data comprised semi-structured interviews with participants. The data were analyzed using grounded theory coding procedures. Most patients preferred to make care decisions with their family caregiver or at least involve their family caregiver in care discussions. Patients engaged in shared decision-making because they felt they benefited from caregiver support. Patients accommodated family caregiver preferences out of concern for that person and because they trusted them. Family caregivers accommodated patient preferences because they wanted to honor the patient's wishes and felt a responsibility to protect patient autonomy when they had a close relationship with the patient. Prior conflict between the patient and family caregiver was a barrier to mutual accommodation. Although concealment was used as a mechanism to support accommodation between the patient and family caregiver, both sought to communicate openly with other family members to negate potential conflict between each other and the wider family. Patients with advanced cancer and family caregivers in specialist palliative care support one another by accommodating each other's preferences for patient care. Patients with advanced cancer and family caregivers accommodate one another in decision-making out of a sense of responsibility to one another.

Palliative Care for Patients With Cancer: ASCO Guideline Update.

To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer. ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations. The literature search identified 52 relevant studies to inform the evidence base for this guideline. Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.

‘How long do you think?’ Unresponsive dying patients in a specialist palliative care service: A consecutive cohort study

Background: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. Aim: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. Design: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient’s final phase of life, taking into account variation across age, gender, diagnosis and location of death. Setting/participants: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. Results: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. Conclusion: This study provides valuable new knowledge to support clinicians’ confidence when responding to the ‘how long’ question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering ‘how long’ questions across the illness trajectory.

Specialist palliative care professionals’ views on access to their services for people with dementia

Background In Ireland and around the world populations are ageing, contributing to an increase in the number of people living with dementia. Dementia is a life-limiting condition and evidence suggests that people with dementia would benefit from specialist palliative care (SPC) input. There is ongoing investigation into how people with dementia access the services they need at the right time. Aim The aim of this study was to explore how people with dementia access SPC services in a region in the Mid-West of Ireland, from the perspectives of key healthcare workers linked to the service. Methods Semi-structured qualitative interviews (n=10) were conducted with healthcare professionals involved in the referral process of accessing SPC input, including consultants, specialist registrars, clinical nurse managers and an assistant director of nursing. The data was analysed using thematic analysis. Results Overall four main themes were identified from the data: Capacity for providing SPC services to people with dementia; Appropriate Referrals and Recognising Need; Inadequate volume and inequitable geographical distribution of dementia services; Service integration and inter-professional collaboration. The underlying premise was the disease trajectory of dementia and a changing model of care. Conclusion A needs assessment rather than a diagnosis is the referral process that underpins access to SPC for people with dementia. However, there is little consensus on ‘grey’ areas within this process and some SPC professionals may be less comfortable with treating patients with dementia. A different model of care is needed.

Study protocol for the development and validation of a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia.

Patients with dementia and their caregivers could benefit from advance care planning though may not be having these discussions in a timely manner or at all. A prognostic tool could serve as a prompt to healthcare providers to initiate advance care planning among patients and their caregivers, which could increase the receipt of care that is concordant with their goals. Existing prognostic tools have limitations. We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. The derivation cohort will include approximately 235,000 patients with dementia, who were admitted to hospital in Ontario from April 1st, 2009, to December 31st, 2017. Predictor variables will be fully prespecified based on a literature review of etiological studies and existing prognostic tools, and on subject-matter expertise; they will be categorized as follows: sociodemographic factors, comorbidities, previous interventions, functional status, nutritional status, admission information, previous health care utilization. Data-driven selection of predictors will be avoided. Continuous predictors will be modelled as restricted cubic splines. The outcome variable will be mortality within 1 year of admission, which will be modelled as a binary variable, such that a logistic regression model will be estimated. Predictor and outcome variables will be derived from linked population-level healthcare administrative databases. The validation cohort will comprise about 63,000 dementia patients, who were admitted to hospital in Ontario from January 1st, 2018, to March 31st, 2019. Model performance, measured by predictive accuracy, discrimination, and calibration, will be assessed using internal (temporal) validation. Calibration will be evaluated in the total validation cohort and in subgroups of importance to clinicians and policymakers. The final model will be based on the full cohort. We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. The model would be integrated into the electronic medical records of hospitals to automatically output 1-year mortality risk upon hospitalization. The tool could serve as a trigger for advance care planning and inform access to specialist palliative care services with prognosis-based eligibility criteria. Before implementation, the tool will require external validation and study of its potential impact on clinical decision-making and patient outcomes. NCT05371782.

Impact of the COVID-19 pandemic on the use of an inpatient and community palliative care service.

The COVID-19 pandemic disrupted the usual provision of healthcare, changing models of care, clinical loads, service provision and patient behaviour. This study assesses the impact of COVID-19 on community and inpatient palliative care service provision. A retrospective audit and comparison of service use conducted over two defined periods, before and during the COVID-19 pandemic, 2019-2020. The community palliative care service had a 9% increase in referrals, with a lower proportion of referrals (2.4%) from subacute/palliative care hospitals during the COVID-19 pandemic. Provision of care during the pandemic included less face-to-face contact with patients (24.1% versus 30.2% before), and markedly more contact with patients via videoconference (2.1% versus 0.1% before the pandemic). The community specialist palliative care service was busier during the pandemic period, and experienced a shift in mode of care delivery, while the inpatient unit experienced no difference in service use.

The value equation for specialist palliative care: design and delivery principles.

The value of specialist palliative care (SPC) is multi-faceted. Patients, families, healthcare providers, health systems and payors all benefit in different ways when SPC is included in the care of those with serious illness; they all have a shared interest in the availability and success of SPC. We propose a new value equation for SPC: SPC services must employ optimal design and standardized delivery of SPC to ensure that the payment model, care model, and needs of the patients are all aligned; and suitable payment models are necessary to provide stable, sustainable resources for the interdisciplinary palliative care teams; when these conditions are met, the cascade of beneficial outcomes of SPC can be produced reliably. We propose a set of 10 design and delivery principles describing these inputs and outcomes, applicable to SPC in all settings-hospital, clinic, and home. Amidst shifts in health policy and financing, the SPC field in the US continues to evolve with new innovations, additional evidence, and a clearer vision of what is valuable. An enduring component of the value equation of SPC continues to be the moderation of the total cost of care for payors. This articulation of the value equation for SPC is based on evidence and experience of palliative care providers and payors in the US, but the framework and principles are likely useful to guide and evaluate SPC in other countries as well.

COVID-19 and End of Life in a Quaternary Australian Hospital: Referral for Palliative Care Consultation.

The coronavirus disease 2019 (COVID-19) pandemic resulted in complex physical and psychosocial symptom burden at end of life. The benefit of specialist palliative care input in other disease states has been established, however, there is little evidence on referral patterns to these services in patients dying from COVID-19. This retrospective audit investigated the referral patterns for patients who died from COVID-19 at a quaternary hospital in South Australia (the Royal Adelaide Hospital) over a six-month period in 2022, and whether demographic features or COVID-19 specific factors had an impact on whether these patients received specialist palliative care services (PCS). The second aim was to identify prescription patterns for patients in the last 24 hours of life, and whether this was impacted by referral. Data were obtained from electronic medical records and analyzed using binary logistic regressions for referral to PCS versus no referral based on various predictors. There was no significant difference comparing patient demographics or COVID-19 specific factors with referral to PCS. There was statistical significance between patients who received referral to PCS and those who had a higher oral morphine equivalent daily dose (OMEDD) in the 24 hours before death, as well as the presence of a continuous subcutaneous infusion. Although the cause of this relationship is undetermined, it may represent the prescription patterns of the palliative care physicians during consultation or potentially higher symptom burden prompting referral. There was also a higher proportion of patients who received hydromorphone compared with other opioids, though the OMEDD was consistent with other published literature.

Development and implementation of the Specialist Palliative Care in Aged Care (SPACE) Project across Queensland.

There is an urgent and unmet need for specialist palliative care services in residential aged care. The Specialist Palliative Care in Aged Care (SPACE) Project aimed to improve palliative and end-of-life care for older people living in residential aged care facilities in Queensland. A representative working group developed a series of service principles around palliative care practice in aged care (comprehensive resident-focused care, streamlined service, and capacity building). Funding was allocated by population to the health services in Queensland to adapt and implement models of care aligned with these principles. SPACE successfully implemented a variety of decentralised models of care across Queensland. The critical elements for the success of SPACE were the use of an expert working group to define the core innovation, networking and implementation support from the central project team and community of practice, and adaptable models of care led by local facilitators. Lessons learned from this real-world case study could be adopted to guide and ensure the successful implementation and sustainability of future complex interventions in healthcare settings, both nationally and internationally.

USING MULTI-LEVEL MODELING TO EXAMINE RACIAL DISPARITIES IN PALLIATIVE CARE AMONG OLDER ADULTS WITH HEART FAILURE

Abstract Studies have found persistent disparities in guideline-concordant cares for heart failure among patients who self-identify as Black. We investigated how the guideline-concordant specialist palliative care (SPC) varied with race among older adults with advanced heart failure (AHF). We identified 16,464 older adults aged ≥65y (median: 74y) with AHF by ICD-9/10 codes seen between 1/1/2018-7/1/2020 in 83 Veterans Affairs Medical Centers (VAMC). In conventional logistic regression without accounting for between-VAMC variation, Black (28%) race was less likely to receive SPC services than White (70%) race [adjusted odds ratio (aOR) of 0.91 (95% Confidence Intervals (CI): 0.84,0.99); predicted probability: 27.6% vs. 29.5%], independent of age, sex and comorbidity. This association diminished to null [aOR: 0.99 (95% CI: 0.90,1.08)] after adding a random intercept for VAMCs (multi-level model (MLM)). Expanding the MLM with specific VAMC characteristics (SPC team staffing (p< 0.05), facility complexity and urbanicity) as fixed effects improved overall model fit (area under ROC: 0.68 vs 0.61, p< 0.05), and accounted for 17% of the VAMC-level variance (intraclass correlation coefficient: 0.069 vs 0.083). There were no cross-level interactions between race and VAMC characteristics. These findings suggest that variation in the individual probability of receiving SPC between Black and White race in this older AHF cohort may be partially explained by between-VAMC differences in SPC staffing and other facility characteristics. To promote equitable access to SPC for older adults with AHF, further research is needed to examine service delivery characteristics and broader contextual determinants of health, such as area socioeconomic disparity of healthcare facilities

Palliative care for infants with life-limiting conditions: integrative review

BackgroundInfants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not...

Supportive relationships between patients and family caregivers in specialist palliative care: a qualitative study of barriers and facilitators

ObjectivesPatients with advanced illness and their family caregivers can be mutually supportive. However, what facilitates and/or restricts supportive relationships between patients and family caregivers in palliative care remains unclear. We...

Current definitions of advanced multimorbidity: a protocol for a scoping review

IntroductionPeople living with and dying from multimorbidity are increasing in number, and ensuring quality care for this population is one of the major challenges facing healthcare providers. People with multimorbidity...

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

Patient and caregiver reciprocal support: Impact on decision making in specialist palliative care.

Patients and informal caregivers in palliative care can reciprocate in supporting one another. However, how reciprocal support among patients and informal caregivers in palliative care impacts on their decision making for care is not well understood. To identify how reciprocal support among patients with advanced illness and their informal caregivers in specialist palliative care impacts on their decision making for care. Between July 2021 and May 2022, 30 qualitative interviews were conducted with 14 patient and caregiver dyads, seven non-dyad caregiver participants and one non-dyad patient participant (total n=36), recruited from a large regional specialist palliative care service. Data were analyzed using Corbin and Strauss grounded theory method. Reciprocal support among patients and informal caregivers was underpinned by obligation and choice. Caregivers who felt obliged to care had difficulty communicating with the patient about the patient's preferences for care and their own wishes for patient care. Patients who felt obliged to accept support from their caregiver tended to minimize caregiver participation in decision making which made caregivers feel disempowered in discussions about patient care. Caregivers tended to be more involved in decision making when caregivers assumed caregiving duties by choice and when the patient did not feel restricted by their reliance on their caregiver. Open communication between patients and caregivers made patients more trusting of their caregiver. Patient and caregiver dyadic interventions in specialist palliative care involving decision making need to account for how obligation and choice manifest and function between the patient and caregiver.

Developing a generic business case for an advanced chronic liver disease support service

IntroductionLiver disease deaths are rising, but specialist palliative care services for hepatology are limited. Expansion across the NHS is required.MethodsWe surveyed clinicians, patients and carers to design an ‘ideal’ service....

The experiences of people with liver disease of palliative and end-of-life care in the United Kingdom-A systematic literature review and metasynthesis.

Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end-of-life care experiences of people with liver disease in the United Kingdom. A systematic review was conducted using a five-stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end-of-life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person-centred care as an important feature. This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person-centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end-of-life. An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic.

Global epidemiology of geriatric burns, capacities of care, and injury outcomes: Perspectives from the World Health Organization global burn registry

BackgroundAn increasing aging population alongside a potentially increasing injury risk emphasizes a critical need for evidence-based burn care regarding preventive and therapeutic strategies tailored to the unique needs of older adults. However, we note a critical gap in understanding geriatric burn trends on a global scale and the care capacity across settings. Thus, this study sought to ascertain the global trend of geriatric burns with a focus on patient demographics, injury characteristics, capacities of care, and injury outcomes. MethodsA retrospective design focusing on older adults aged ≥ 60 years with burns recorded in the World Health Organization Global Burn Registry as of 31st May 2023 was employed. Descriptive statistics were employed to analyze the data. ResultsOf the 9277 records obtained from the Global Burn Registry, 849 participants (9.2%) were aged ≥ 60 years with the majority of these reported from the Eastern Mediterranean (EMRO) and Southeast Asia (SEARO) regions. More females than males were involved in burn injuries with the most common aetiological factor being flame. Most burns occurred in the home/ domestic setting with a seasonal variation (more injuries occurred in December and January). In terms of burn care capacity, the data suggest the availability of specialized services in most settings albeit the AFRO and SEARO regions still lacked the resources to offer specialized burn care. While most injured older adults were discharged home with no physical impairment (395, 46.5%), a substantial number died (250, 29.4%) during hospitalization, particularly in the African (AFRO) region and 111 (11.1%) left the facility against medical advice with the majority from the SEARO region (88). ConclusionBurn injuries in older adults remain a public health issue. On the preventive aspect, the results demonstrate a need to intensify safety in the home or domestic setting, and during festive seasons. Therapeutically, the findings underscore a need to consider the inclusion of more specialist geriatric and palliative care services in the burn management process. Additionally, we identified a need to strengthen burn care capacity in the AFRO and SEARO regions.

Evaluating a specialist palliative care service in a community setting

Background/Aims In the Norfolk and Waveney Integrated Care System, a community organisation and a hospice have collaborated to develop an innovative specialist palliative care service in a community hospital. The aim of this service evaluation was to review the specialist palliative care service 2 years after implementation began across the integrated care system. Methods A multi-method approach was used to evaluate this service. Data were collected from pre-existing datasets on referrals, discharge and service use and described using descriptive statistics to assess how the service was used during the evaluation period (1 April 2019–31 March 2021). Qualitative data were collected via semi-structured interviews with 25 patients, carers, staff and other stakeholders. Interview transcripts were analysed using thematic analysis. Results During the 2-year evaluation period, the service recorded 1800 referrals, 189 admissions to specialist beds and 19 712 telephone calls to the 24-hour advice line. Thematic analysis of interview transcripts identified four themes: impact of the specialist palliative care beds, implementation of changes to practice, communication and coordination, and challenges related to providing the service. Overall, patients and carers had very positive views of the quality of care they received. Staff also identified benefits, including access to training and improved morale. Challenges included the limited number of beds and difficulties balancing the care needs of palliative care patients with other patients in the inpatient ward. Conclusions The specialist palliative care service promoted collaborative working, leading to enhanced knowledge and skills for staff supporting patients with specialist palliative care needs. The service was well-used and patients and their carers were generally very satisfied with the care they received.

Assessment and management of upper limb lymphoedema in advanced disease: a case study.

Lymphoedema is thought to affect around 200 000 people in the UK (NHS England, 2023). Secondary lymphoedema is a relatively common complication of cancer and cancer treatment, and in advanced disease it may present a challenging issue for community nursing staff caring for patients approaching the end of their lives. In this article, a case study considers the assessment and treatment of upper limb lymphoedema in a patient with advanced metastatic breast cancer. Management of this complex and distressing condition requires holistic assessment and collaborative care planning with the patient and their wider care team, including onward referral to specialist lymphoedema and palliative care services. The case study considers the typical presentation of lymphoedema in an upper limb, exclusion of reversible causes for oedema, awareness of palliative care emergencies such as superior vena cava obstruction, and the provision of supportive therapeutic interventions in context of the patient's expressed wishes for her ongoing care.