Specialist Palliative Care Team Research Articles

General practice and specialist palliative care teams: an exploration of their working relationship from the perspective of clinical staff working in New Zealand.

With the future focus on palliative and end-of-life care provision in the community, the role of the general practice team and their relationship with specialist palliative care providers is key to responding effectively to the projected increase in palliative care need. Studies have highlighted the potential to improve co-ordination and minimise fragmentation of care for people living with palliative care need through a partnership between generalist services and specialist palliative care. However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The aim of this study was to explore how general practice and specialist palliative care team (SPCT) members view their relationship in terms of partnership working. Five focus group discussions with general practices and SPCT members (n=35) were conducted in 2012 in two different regions of New Zealand and analysed using a general inductive approach. The findings indicate that participants' understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of 'generalism' and 'specialism' also provided challenges for those endeavouring to meet palliative care need collaboratively in the community. Further research is required to better understand the factors associated with successful partnership working between general practices and specialist palliative care in order to develop robust strategies to support a more sustainable model of community palliative care.

The Effect of Community-Based Specialist Palliative Care Teams on Place of Care

Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death. The study objective was to examine the place of care in the last 30 days of life. In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort. After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p < 0.001) than the unexposed group. On the last day of life (place of death), the exposed group had 18% die in an in-patient hospital bed compared to 29% in usual care. Examining place of care in the last month can effectively illustrate the service use trajectory over time.

“It is not the fading candle that one expects”: general practitioners’ perspectives on life-preserving versus “letting go” decision-making in end-of-life home care

Background Many general practitioners (GPs) are willing to provide end-of-life (EoL) home care for their patients. International research on GPs’ approach to care in patients’ final weeks of life showed a combination of palliative measures with life-preserving actions.Aim To explore the GP’s perspective on life-preserving versus “letting go” decision-making in EoL home care.Design Qualitative analysis of semi-structured interviews with 52 Belgian GPs involved in EoL home care.Results Nearly all GPs adopted a palliative approach and an accepting attitude towards death. The erratic course of terminal illness can challenge this approach. Disruptive medical events threaten the prospect of a peaceful end-phase and death at home and force the GP either to maintain the patient’s (quality of) life for the time being or to recognize the event as a step to life closure and “letting the patient go”. Making the “right” decision was very difficult. Influencing factors included: the nature and time of the crisis, a patient’s clinical condition at the event itself, a GP’s level of determination in deciding and negotiating “letting go” and the patient’s/family’s wishes and preparedness regarding this death. Hospitalization was often a way out.Conclusions GPs regard alternation between palliation and life-preservation as part of palliative care. They feel uncertain about their mandate in deciding and negotiating the final step to life closure. A shortage of knowledge of (acute) palliative medicine as one cause of difficulties in letting-go decisions may be underestimated. Sharing all these professional responsibilities with the specialist palliative home care teams would lighten a GP’s burden considerably.Key PointsA late transition from a life-preserving mindset to one of “letting go” has been reported as a reason why physicians resort to life-preserving actions in an end-of-life (EoL) context. We investigated GPs’ perspectives on this matter.Not all GPs involved in EoL home care adopt a “letting go” mindset. For those who do, this mindset is challenged by the erratic course of terminal illness.GPs prioritize the quality of the remaining life and the serenity of the dying process, which is threatened by disruptive medical events.Making the “right” decision is difficult. GPs feel uncertain about their own role and responsibility in deciding and negotiating the final step to life closure.

How do junior doctors in the UK learn to provide end of life care: a qualitative evaluation of postgraduate education.

BackgroundThe fundamental importance of good end of life care has been well documented however recent national publications have high-lighted inadequacies in training in this area. For many patients dying in the UK today care is provided in hospital and the number of inpatient deaths is forecast to climb significantly in future. The demands of providing medical care for these patients by junior doctors will continue to rise. However, there is currently only limited research on training for doctors in this setting.MethodsA qualitative study using semi-structured interviews of trainees working in general medicine analysed utilising a grounded theory approach.ResultsEleven medical trainees from nine different medical schools participated. They had worked in fifteen different UK hospitals in the course of their careers. All of the doctors interviewed felt generally confident in managing a dying patient. This had developed at postgraduate level and increased when working in certain key specialties. Emerging themes fell into five main categories: perceived ability in clinical management, different learning opportunities experienced, the impact of variations in approach to end of life care, the role of the specialist palliative care team and suggestions for improvements to training. All participants felt further teaching would be beneficial.ConclusionsThis study identified key areas where training could be improved. This included small changes in everyday practice to shift the emphasis for trainees to education. There also needs to be focus on end of life care in the curriculum, formal teaching programmes and assessment of junior doctors. The specialist palliative care team played a vital role in training as well as service provision. For those working in this specialty, every clinical encounter provides an opportunity for education. Specifically targeting junior doctors will not only improve patient care today but empower the consultants of the future.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0039-6) contains supplementary material, which is available to authorized users.

Teleconsultation for integrated palliative care at home: A qualitative study

Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. Aim: This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. Design: This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. Setting/participants: A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24–85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. Results: Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. Conclusion: Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were less common but stimulated patient-centered care dialogues.

Palliative care for cirrhosis: a UK survey of health professionals’ perceptions, current practice and future needs

ObjectiveTo determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research.DesignAn on-line...

The palliative care needs of people severely affected by neurodegenerative disorders: A qualitative study

Specialist palliative care services are often involved in the care of people with progressive neurological disease, in particular amyotrophic lateral sclerosis. However, the particular needs of people with advanced and progressive neurological disease are not well known. A qualitative approach was used, interviewing people with advanced amyotrophic lateral sclerosis/motor neurone disease (ALS/MND), multiple sclerosis (MS), Parkinson's disease (PD), and multiple systems atrophy (MSA) and their family carers to ascertain their particular needs. Focus groups of health and social care professionals allowed a professional view of the needs. People with progressive disease have many, difficult and distressing symptoms: physical, including pain, movement issues, swallowing and speech problems, psychological, feelings of being abandoned and of anxiety and depression, social, of isolation, of being a burden and of financial issues, and spiritual, of loss of hope and the meaning of life as they approach death. These issues could be helped by the development of a palliative care approach and the involvement of a specialist palliative care team, which was supported by patients, carers, and professionals.

How outpatient palliative care teleconsultation facilitates empathic patient-professional relationships: a qualitative study.

ObjectiveThe problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists.MethodsThis work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations.ResultsThe analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients’ daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief.ConclusionsTeleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient’s context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily palliative care practice.

Emergency department as final destination: perception and reception of the palliative patient" concept as well as approach toward improving interdisciplinary collaboration - a survey of emergency personnel of a Swiss emergency department

As the demand for palliative care (PC) in emergency wards continues to increase, emergency medicine is increasingly focusing on the care of extremely ill patients with incurable, chronic and/or advanced diseases. There is no consistent definition of the profile of PC or understanding of what PC involves. The mistake is often made of confusing PC with end-of-life or terminal care. The present study was intended to assess the situation at the Department of Emergency Medicine, Inselspital, Bern University Hospital (UNZ), which cares for about 32 400 patients annually. The plan was to find out how much staff members knew about PC and to survey their personal attitudes. The employees of the UNZ were surveyed with an online questionnaire by a special institution outside the hospital. This is based on an instrument [1] developed in a comparative study in an emergency ward in the USA and used for physicians. 60 of 154 staff members (physicians and nurses) completed the questionnaire, corresponding to a response rate of 39%. The definition of palliative care (n=60) was very mixed and could be classified into 6 areas. In response to questions about specific services, the staff members mentioned that their access to existing patient data should be facilitated. They also expressed the wish for a 24 h palliative consultation service and thought that, during normal working days, more time should be allotted to discussing issues related to palliative care. It has been confirmed that the definition of palliative care is not consistent. Within the UNZ, there is no clear procedure, but lack of time for detailed discussions with patients needing palliative care. Patient wishes or living wills with the DNR/DNI procedure do not contradict the personal ethics of most staff members. UNZ staff members would welcome the 24 h availability of a specialized PC team, as well as the development of guidelines and increased training in PC.

The role and organisation of community palliative specialist nursing teams in rural England.

This article describes a study that used a qualitative approach, purposive sampling and semi-structured telephone interviews conducted with specialist palliative care nurses from six rural community teams in England. The study investigated how services were organised and the issues of delivering specialist palliative nursing care in a rural area. Qualitative content analysis was used to analyse the data. The findings showed many similarities in that the majority of patients in rural areas were not accessing hospice services and there was a greater reliance on care at home. However, the challenges in delivering care ranged from managing patient expectations, geographical distance, lack of technology to support remote working and education for the specialist palliative care teams. The study makes specific recommendations for rural community specialist palliative care teams.

Learning, development, and support needs of community palliative care clinical nurse specialists.

The palliative care clinical nurse specialist (PC-CNS) is a core member of the specialist palliative care team. According to professional policy, the role has four specific components: clinical practice, education, research, and leadership and management. Little is known about how to support staff in this role. The aim of this study was to explore what learning, development, and support PC-CNSs in one hospice need to enable them to fulfil all components of their role. Using a descriptive exploratory approach, semi-structured interviews were undertaken with a purposive sample of community PC-CNSs from a hospice in Northern Ireland. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Seventeen interviews were analysed and three themes identified: influence of organisational culture, influence of the individual, and learning and development solutions. Participants reported that the PC-CNS role was stressful. They identified that the organisational culture and indeed individuals themselves influenced the learning and development support available to help them fulfil the four components of the role. Working relationships and stability within teams affected how supported individuals felt and had implications for managers in meeting the needs of staff while balancing the needs of the service.

The last 48 hours

With an increasing number of patients identifying home as their preferred place of death, GPs are finding themselves at the frontline of providing end-of-life care. Although there is often support available from specialist palliative care teams in the community, GPs are themselves highly capable of providing good general palliative care, commencing advance care planning and supporting patients and their relatives through what can be a difficult time. Early identification of patients approaching the end of their life enables effective planning, prioritisation of care, and making sure that appropriate resources are available, allowing patients to receive care in a timely and coordinated manner.

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

Objective To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes.Design Pooled analysis of a retrospective cohort study.Setting Ontario, Canada.Participants...

Identifying the key elements of an education package to up-skill multidisciplinary adult specialist palliative care teams caring for young adults with life-limiting conditions: an online Delphi study

ObjectivesTo collect the views of experts to inform the development of an education package for multidisciplinary adult specialist palliative care (SPC) teams caring for young people with life-limiting conditions.MethodsA modified...

DYING IN HOSPITAL-IS THERE AN UNMET PALLIATIVE CARE NEED FOR PATIENTS WHO DIE WITHIN 48 HOURS OF ADMISSION?

BackgroundThe majority of people in the UK die in hospital and many more die in hospital than are seen by the inpatient specialist palliative care team (SPCT).AimsTo assess the population...

PATIENTS WHO DIE IN HOSPITAL—IS THERE AN UNMET PALLIATIVE CARE NEED?

BackgroundThe majority of people in the UK die in hospital and many more die in hospital than are seen by the inpatient specialist palliative care team (SPCT).AimsTo assess the population...

MEETING PALLIATIVE CARE NEEDS AT THE END OF LIFE IN PATIENTS WITH INTERSTITIAL LUNG DISEASE

BackgroundBritish Thoracic Society (BTS 2008) and NICE (2013) Guidelines recommend integration of Palliative care with local services to enable access to best supportive care from diagnosis till death. In October...

A QUALITATIVE STAFF EVALUATION RE-AUDIT OF THE HOSPITAL SPECIALIST PALLIATIVE CARE TEAM AND EVALUATION OF OUR 7 DAY SERVICE

During October 2011 an internal staff questionnaire was designed to gain feedback on the hospital specialist palliative care team from selected nursing groups, junior doctors and consultants. The aim was...

TRANSFORMING END OF LIFE CARE IN ACUTE HOSPITALS – HOW TO SET UP A TRUST WIDE PROJECT WITH BOARD LEVEL SUPPORT

BackgroundThe Leeds Teaching Hospitals NHS Trust (LTHT) is a flagship Trust for the NHSIQ ‘Transforming End of Life Care (EoLC) in Acute Hospitals programme’ .Previous EoLC initiatives had been led...

WHEN SHOULD WE TELL THE CHILDREN?

BackgroundIn recent years, there has been growing recognition that the needs of dependent children should be considered when dealing with a parent with a life-threatening illness, Much patient distress can...