Access To Specialist Palliative Care Research Articles

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...

Preferences of Older People With a Life-Limiting Illness: A Discrete Choice Experiment.

There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences. A cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences. Of the 77 patients were interviewed, 51 participated in the Discrete Choice Experiment component of the interview (response rate=66%). Participants prioritized support that minimized unpaid caregiver burden (P < 0.001). They also preferred ease of access to services including out-of-hours access (P < 0.001) and free care at home (P < 0.001). Quality of life was prioritized over quantity of life (<0.001). People living with a life-limiting illness value care that focuses on quality of life, ensures barrier-free access to services and provides sufficient support for relatives. In the context of limited resources and growing demand for care, this study provides evidence about the service elements palliative care delivery models should prioritize and evaluate.

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care.

Background: Consumer experience of palliative care has been inconsistently and selectively investigated. Methods: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. Results: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. Conclusions: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.

Occurrence and timely management of problems requiring prompt intervention among Indigenous compared with non-Indigenous Australian palliative care patients: a multijurisdictional cohort study

ObjectivesAnticipation and prompt relief of symptoms among patients with a life-limiting illness is a core element of palliative care. Indigenous Australians commonly encounter cultural barriers in healthcare that may impair...

Candidates and candidacy: Patient, carer and staff perceptions of referral to a specialist palliative day unit

Background Specialist palliative day care can support palliative caregiving for those living in the community with advanced disease. However, how people access specialist palliative day care and why is unclear. This study therefore aims to explore the referral experiences of patients, carers and staff in the context of a specialist palliative day care unit. Design Qualitative study using constant comparative analysis to explore referral experiences to a UK specialist palliative day unit through one-to-one interviews with patients (n=15), family carers (n=6) and staff (n=10) including nurses, medics and managers and focus groups with (n=3 and n=7) specialist palliative care nurses. Findings The three datasets (staff, patients and carers) provide a triangulation of perspectives captured within the core category of ‘managing referral’ and presented as six sub-themes. Staff described referral as an intuitive interaction involving ‘looking for openings’ and ‘getting people through the door’. Patients familiar with the service were persistent in ‘shouting for help’ but most regarded referral with dread, only ‘giving it a go’ following crisis. For family carers referral presented ‘time out/respite’ but also the ‘end-of-the-line’. Conclusions Unclear understandings of services as well as uncertain professional, patient and carers notions of candidacy influence referral to specialist palliative day care.

How Many People Need Palliative Care and How Many Miss Out?

With an ageing population and growing burden of chronic disease, the number of people requiring palliative or end-of-life care (P&EOLC) is set to rise. It is imperative to develop a comprehensive understanding of the quality and equity of P&EOLC provision to promote sustainable health systems. The aim of this presentation is to report an observational study of N=3,171 decedents across a Local Health Network to: 1) estimate the proportion who need, access and miss out on P&EOLC in the last 12 months of life, and 2) identify differences by clinical and sociodemographic characteristics. Analysis was performed on multiple integrated datasets containing routinely collected health and mortality data. Estimation methods based on underlying cause of death were applied to determine those decedents who could potentially benefit from P&EOLC. Results identified potential benefit to 75% of decedents, of which 62% received P&EOLC and 13% missed out. Decedents aged 85 years or more and from a residential aged care facility showed the lowest proportion of access. Decedents with diagnosis of liver or kidney failure and dementia received more P&EOLC than were expected to benefit. Multivariate logistic regression identified that diagnosis and no other clinical or sociodemographic factor was significantly associated with likelihood of accessing specialist palliative care, with cancer showing highest likelihood and heart failure lowest likelihood. This research highlights the value of population-based estimates to provide a ‘whole of system view’ of quality and equity of P&EOLC, with ready translation for service planners around resource allocation for need and likely benefit.

Renal supportive care, palliative care and end-of-life care: Perceptions of similarities, differences and challenges across Australia and New Zealand.

To understand renal clinicians' views and experiences of RSC, palliative care and end-of-life care. A cross-sectional online survey was undertaken across Australia and New Zealand between February and May 2018. Participants were asked about end-of-life care, RSC, palliative care and an ideal model of RSC. Estimated response rate 13% included 382 clinicians; doctors (32%), nurses (68%); of whom 84% access specialist palliative care and 59% RSC. A lack of agreed treatment goals (86%) and late or rushed treatment decision making (85%) was associated with challenging end-of-life experiences. Variable concepts of RSC were described, with RSC being considered the same as: usual care for all CKD patients (40%), conservative (30%) or palliative care (22%). The term RSC was generally distinct from (77%) and more acceptable than palliative care (80%) with preferential RSC referral for symptoms (86% vs 69%, P < .01) and complex treatment decision making (82% vs 58%, P < .01). Aspirations for RSC included improving symptoms and quality of life (89%), with an ideal model comprising: symptom management (98%), improved nephrology and community service integration (96%) and clinician education (94%). This study revealed challenges for renal clinicians in providing end-of-life care and variation of views and experiences of RSC. It represents opportunities to develop RSC aligned with clinician priorities to improve patient care.

Hospices and palliative care for children: converging stories.

Children's hospices offer support to children and their families according to a model that is quite different from adult hospices and has evolved in parallel with specialist paediatric palliative medicine services. Published research, Together for Short Lives. The services hospices offer are highly valued by families. It is not always clear that hospices can be described as 'specialist', which can make it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector. Children's palliative care generally is poorly developed compared with the adult specialty, and local providers should work with hospices to help redress the inequity that children face in accessing specialist palliative care. If hospices are to continue to be important providers of palliative care in children they must develop robust and fair relationships with local healthcare providers. That would be facilitated by development of a funding formula for children that properly acknowledges the part hospices already play in palliative care.

Experiences of symptoms and health service preferences among older people living with chronic diseases during the last year of life.

There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences. To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers. The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17. The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home. The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.

A Palliative Approach is Adopted for Many Patients Dying in Hospital with Chronic Obstructive Pulmonary Disease

Severe chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD) is undertreated and few patients access specialist palliative care in the years before death. This study aimed to determine if symptom palliation or a palliative approach were delivered during the final hospital admission in which death occurred. Retrospective medical record audits were completed at two Australian hospitals, with all patients who died from COPD over 12 years between 1 January 2004 and 31 December 2015 included. Of 343 patients included, 217 (63%) were male with median age 79 years (IQR 71.4–85.0). Median respiratory function: FEV1 0.80L (42% predicted), FVC 2.02L (73% predicted) and DLco 9 (42% predicted). 164 (48%) used domiciliary oxygen. Sixty (18%) patients accessed specialist palliative care and 17 (5%) wrote an advance directive prior to the final admission. In the final admission, 252 (74%) patients had their goal of care changed to aim for comfort (palliation) and 99 (29%) were referred to specialist palliative care. Two hundred and eighty-six (83%) patients received opioids and 226 (66%) received benzodiazepines, within 1 or 2 days respectively after admission to palliate symptoms. Median starting and final opioid doses were 10 mg (IQR = 5–20) and 20 mg (IQR = 7–45) oral morphine equivalent/24 h. Hospital site and year of admission were significantly associated with palliative care provision. Respiratory and general physicians provided a palliative approach to the majority of COPD patients during their terminal admission, however, few patients were referred to specialist palliative care. Similarly, there were missed opportunities to offer symptom palliation and a palliative approach in the years before death.

Palliative care specialists\u2019 perceptions concerning referral of haematology patients to their services: findings from a qualitative study

BackgroundHaematological malignancies (leukaemias, lymphomas and myeloma) are complex cancers that are relatively common, affect all ages and have divergent outcomes. Although the symptom burden of these diseases is comparable to other cancers, patients do not access specialist palliative care (SPC) services as often as those with other cancers. To determine the reasons for this, we asked SPC practitioners about their perspectives regarding the barriers and facilitators influencing haematology patient referrals.MethodsWe conducted a qualitative study, set within the United Kingdom’s (UK’s) Haematological Malignancy Research Network (HMRN: www.hmrn.org), a population-based cohort in the North of England. In-depth, semi-structured interviews were conducted with 20 SPC doctors and nurses working in hospital, community and hospice settings between 2012 and 2014. Interviews were digitally audio-recorded, transcribed and analysed for thematic content using the ‘Framework’ method.ResultsStudy participants identified a range of barriers and facilitators influencing the referral of patients with haematological malignancies to SPC services. Barriers included: the characteristics and pathways of haematological malignancies; the close patient/haematology team relationship; lack of role clarity; late end of life discussions and SPC referrals; policy issues; and organisational issues. The main facilitators identified were: establishment of inter-disciplinary working patterns (co-working) and enhanced understanding of roles; timely discussions with patients and early SPC referral; access to information platforms able to support information sharing; and use of indicators to ‘flag’ patients’ needs for SPC. Collaboration between haematology and SPC was perceived as beneficial and desirable, and was said to be increasing over time.ConclusionsThis is the first UK study to explore SPC practitioners’ perceptions concerning haematology patient referrals. Numerous factors were found to influence the likelihood of referral, some of which related to the organisation and delivery of SPC services, so were amenable to change, and others relating to the complex and unique characteristics and pathways of haematological cancers. Further research is needed to assess the extent to which palliative care is provided by haematology doctors and nurses and other generalists and ways in which clinical uncertainty could be used as a trigger, rather than a barrier, to referral.

Blood pressure evaluation and review of antihypertensive medication in patients with life limiting illness.

Background Patients with life limiting illness commonly have multiple co-morbidities that require the use of complex, costly pharmacotherapy. One such example is using medications to treat hypertension in life limiting illness. Objective To: (1) assess the prevalence of previously documented hypertension and associated blood pressure in a cohort of patients with life limiting illness; and, (2) assess the appropriateness of antihypertensive medication in this patient group. Method This was a single centre study at a tertiary, specialist palliative care centre in Northern England. Electronic medical notes were reviewed and data were extracted. Antihypertensive medication was assessed for appropriateness using a conceptual framework. Results A total number of 54 patients were included in the study. Twenty six (48.1%) had previously documented hypertension: the mean blood pressure of which was 122/65mmHg (SD 17.0/10.5), while for the normotensive patients it was 122/73mmHg (SD 21.0/11.6). Of the 26 patients using antihypertensive medication, 25 were assessed as using the medication inappropriately. Conclusions The blood pressure for patients with previously documented hypertension who access specialist palliative care day services is commonly below the NICE target threshold. The majority of these patients are prescribed antihypertensive medications inappropriately.

A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on?

BackgroundHistorically, specialist palliative care has been accessed by a greater proportion of people dying with cancer compared to people with other life-limiting conditions. More recently, a variety of measures to improve access to palliative care for people dying from non-cancer conditions have been implemented. There are few rigorous population-based studies that document changes in palliative care service delivery relative to the number of patients who could benefit from such services.MethodA retrospective cohort study of the last year of life of persons with an underlying cause of death in 2009–10 from cancer, heart failure, renal failure, liver failure, chronic obstructive pulmonary disease, Alzheimer’s disease, motor neurone disease, Parkinson’s disease, Huntington’s disease and/or HIV/AIDS. The proportion of decedents receiving specialist palliative care was compared to a 2000–02 cohort. Logistic regression models were used identify social and demographic factors associated with accessing specialist palliative care.ResultsThere were 12,817 deaths included into the cohort; 7166 (56 %) from cancer, 527 (4 %) from both cancer and non-cancer conditions and 5124 (40 %) from non-cancer conditions. Overall, 46.3 % of decedents received community and/or hospital based specialist palliative care; a 3.5 % (95 % CI 2.3–4.7) increase on specialist palliative care access reported ten years earlier. The majority (69 %; n = 4928) of decedents with cancer accessed palliative care during the last year of life. Only 14 % (n = 729) of decedents with non-cancer conditions accessed specialist palliative care, however, this represented a 6.1 % (95 % CI 4.9–7.3) increase on the specialist palliative care access reported for the same decedent group ten years earlier. Compared to decedents with heart failure, increased odds of palliative care access was observed for decedents with cancer (OR 10.5; 95 % CI 9.1–12.2), renal failure (OR 1.5; 95 % CI 1.3–1.9), liver failure (OR 2.3; 95 % CI 1.7–3.3) or motor neurone disease (OR 4.5; 95 % CI 3.1–6.6). Living in major cities, being female, having a partner and living in a private residence was associated with increased odds of access to specialist palliative care.ConclusionThere is small but significant increase in access to specialist palliative care services in Western Australia, specifically in patients dying with non-cancer conditions.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0119-2) contains supplementary material, which is available to authorized users.

Palliative Care Delivery Models

To provide an overview of the four major palliative care delivery models: ambulatory clinics, home-based programs, inpatient palliative care units, and inpatient consultation services. The advantages and disadvantages of each model and the generalist and specialist roles in palliative care will be discussed. Literature review. The discipline of palliative care continues to experience growth in the number of programs and in types of delivery models. Ambulatory- and home-based models are the newest on the scene. Nurses caring for oncology patients with life-limiting disease should be informed about these models for optimal impact on patient care outcomes. Oncology nurses should demonstrate generalist skills in the care of the seriously ill and access specialist palliative care providers as warranted by the patient's condition.

The lived experiences of the Sikh population of South East England when caring for a dying relative at home.

Few ethnic minorities access specialist palliative care (SPC) services when caring for a dying relative at home. This project aimed to explore and understand the experiences of the Sikh population of south east England when caring for a dying relative at home without support from SPC. Six semi-structured interviews were conducted with carers in Punjabi or English and the transcripts were analysed using interpretative phenomenology. Five super-ordinate themes were identified: factors leading to the caring role, emotional effects of caring on the carer, impact of caring on the wider family, influence of health-care services, and religious and cultural influence. The most common emergent theme was lack of support from health professionals, which emerged from a lack of awareness of services. A sense of duty and hard work was apparent throughout, and appeared to sustain the family. There seemed to be a sense of duty to care for the relative at home. Financial concerns were expressed frequently. The decision to adopt the caring role appeared to be made by the entire family. The Sikh faith seemed to give strength to carers. There appeared to be heightened awareness of what other community members think of carers' actions. There is a need for health professionals to reach out to this population to increase awareness of and trust in the services that are available to support care at the end of life. However, an unwillingness to accept assistance may persist in some cases.

Inappropriate prescribing in patients accessing specialist palliative day care services

For patients accessing specialist palliative care day services, medication is prescribed routinely to manage acute symptoms, treat long-term conditions or prevent adverse events associated with these conditions. As such, the pharmacotherapeutic burden for these patients is high and polypharmacy is common. Consequently, the risk of these patients developing drug-related toxicities through drug–drug interactions is exacerbated. Medication use in this group should, therefore, be evaluated regularly to align with achievable therapeutic outcomes considering remaining life expectancy. To (1) assess the prevalence of inappropriate medication use; (2) identify potential drug–drug interactions; and, (3) determine how many potential drug– drug interactions could be prevented by discontinuing inappropriate medication. A specialist tertiary care palliative care centre in Northern England serving a population of 330,000. Prescribing of inappropriate medication. Medication histories for patients accessing a specialist palliative day care centre were established and a modified Delphi method was used to reach consensus of medication appropriateness. The Delphi method utilized a framework considering the following factors: remaining life expectancy of the patient, time until benefit of the treatment, goals of care and treatment targets. Potential drug interactions were established using drug interaction recognition software and categorised by their ability to cause harm. A total number of 132 patients were assessed during the study period who were prescribed 1,532 (mean = 12/patient) medications; 238 (16 %) were considered inappropriate in the context of limited life expectancy. The most common class of medications considered inappropriate were the statins, observed in 35 (27 %) patients. A total of 267 potential drug–drug interactions were identified; 112 were clinically significant and 155 were not considered clinically significant. Discontinuation of inappropriate medication would reduce the total number of medications taken to 1,294 (mean = 10/patient) and prevent 31 clinically significant potential drug–drug interactions. Patients accessing specialist palliative day care services take many inappropriate medications. These medications not only increase the pharmacotherapeutic burden for the patient but they also contribute to potential drug–drug interactions. These patients should have their medication reviewed in the context of life limiting illness aligned with achievable therapeutic outcomes.

INTEGRATED PALLIATIVE CARE/ADVANCED RESPIRATORY DISEASE (ARD) CLINICS – A MULTI-CENTRE PILOT PROJECT

BackgroundThe symptom burden of ARD is similar to that of cancer, however patients with COPD are less likely to access Specialist Palliative Care (SPC) Services, and less likely to die...

The caregiving perspective in heart failure: a population based study

BackgroundHeart failure (HF) is a frequent condition in the elderly and mortality is high. This study sought to describe the profile of those providing care in the community and their needs.MethodsThe South Australian Health Omnibus is an annual, random, face-to-face, cross sectional survey conducted within the state. Having standardized data to the whole population, the study describes the subset of the population who identify that they actively cared for someone at the end of life with HF in the five years before survey administration.ResultsThree hundred and seventy three respondents (2.0% of the whole population; 4.9% of caregivers) reported being a caregiver of someone with HF. There were 84 active caregivers (day-to-day or intermittent hands on caregivers) for people with HF. Mean age for caregivers for those with HF was much higher than other caregivers (55.7 vs 49.4; p < 0.001) with care lasting for an average of 48.9 months (SD 66.2). People caring for those with HF were far less likely to access specialist palliative care services (38.1% vs 60.9%; p < 0.0001) despite having much greater levels of unmet needs for physical care 28.3% vs 14.1%; p = 0.008).ConclusionStudy findings suggest that there is a significant burden placed on caregivers for people with HF over extended periods in the community. There are differences in access to services for these caregivers compared to those dying from other conditions, particularly cancer.

Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study

Background: Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services. Aim: To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care. Design: Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach. Setting/participants: Eight patients accessing specialist palliative care within one city in North West England. Results: Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants’ perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge. Conclusions: Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access.

Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals

BackgroundThe requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and non-malignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden.MethodsTwo hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden.ResultsThe sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05).ConclusionThe paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden.