Rehabilitation and specialist palliative care

Enabling individuals to achieve their maximum potential and quality of life following a diagnosis of advanced cancer, has long been a stated aim of palliative care. Increased life expectancy and the introduction of specialist palliative care to patients at an earlier stage of their illness presents professionals in the specialty with new challenges in meeting the need for rehabilitative care. This article examines some of the recent developments affecting the provision of rehabilitative care and describes one specialist palliative care unit's response to the challenge, highlighting the role of a nurse-led clinic within the service framework.     

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians

Purpose

Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services.

Methods

Fifty-four physicians were interviewed on their most recent case of palliative sedation.

Results

Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation.

Conclusion

Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.     

Audit on discharging patients from community specialist palliative care nursing services

Discharging patients from community specialist palliative care services is a contentious issue. Although some specialist nursing teams discharge patients at the earliest opportunity and are open to re-referral, others retain patients as "pending", i.e. patients do not receive regular contact or intervention but remain on the caseload until a need arises. This anomaly is not surprising given the lack of evidence of good practice in the discharge of patients who no longer have specialist needs. This article describes an audit by a community specialist palliative care nursing team of patients discharged from their caseloads over a 6-month period from January to June 2002. The aims of the audit were to compare the reasons for discharge given by the nurse specialists with existing discharge criteria and to provide data for guidelines for good practice in discharging patients. The rate of re-referral for the discharged cohort was also measured. There were 199 patient discharges in the audit period with 23 being re-referred within 6 months of discharge. The reasons for discharge were generally broader than the discharge criteria and the nurses frequently emphasized to the patient, the family and primary carers that re-referral was welcomed as needs arise. The need for multicentre discharge audits was also highlighted.     

The contribution of psychologists to specialist palliative care

Current approaches to multidisciplinary working in specialist palliative care generally acknowledge the need for psychological care and the contribution of specialist psychological services. Embedded within an integrated approach to care, there has long been a recognition of the psychological needs of patients and their informal caregivers, although there has been less consensus on how these needs should be addressed. Confusion appears to exist regarding the boundaries between psychological support and psychological interventions, and which members of the multidisciplinary team are best qualified to provide them. This article aims to explore the contribution of psychologists and psychological services to specialist palliative care. It offers a conceptual model to help categorize psychological care in hospices and specialist palliative care services. It seeks to help define the boundaries between general psychological support and care that may be offered by nurses and other health care professionals, and the specialist expertise of psychologists.     

Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers

BACKGROUND: Specialist palliative care (SPC) services in Ireland are well developed by international standards. However, standardized information on all patients of SPC services is not collected so the proportion of patients seen with a noncancer diagnosis is just an estimate at 5%. AIMS: To describe Irish SPC services' provision for, and attitudes to noncancer patients. METHOD: Postal questionnaire of clinical managers of all SPC services listed in the directory of SPC services in Ireland, September 2005. RESULTS: Sixty-five questionnaires were returned representing a 100% response rate. Twenty four percent (n = 15) of services limited availability for noncancer patients in some way. Of those services available for noncancer patients, the type of care provided to them was the same as for cancer patients in 81% of services (n = 50). The percentage of all patients seen in 2004 who had a noncancer diagnosis was 7.21%. Only 68% (n = 42) of services had a written referral policy. The top three perceived barriers by SPC service providers were the unpredictable noncancer disease trajectory (mean intensity = 6.77), the resultant difficulties with developing referral criteria (mean intensity = 6.38) and the lack of noncancer disease specific expertise (mean intensity = 5.96). DISCUSSION: There is a mismatch between availability of palliative care services for noncancer patients and uptake. The noncancer disease trajectory continues to be considered a barrier to care. Imaginative models of care need to be developed that are not prognosis based.     

Evidencing cost efficiencies in specialist palliative care

In this difficult economic climate there is an increasing need in health care not only to measure improvements in quality of care but also to evidence cost efficiencies in services. Although specialist palliative care (SPC) has historically been viewed as synonymous with provision of quality care for patients, this seems unlikely to be viewed in the future as an inherent guarantee of optimum efficiency. It looks as though the SPC fraternity is going to have to quantify its value for money.     

Changing opioid legislation to improve specialist palliative care in Romania

Abstract

Palliative care has developed in Romania over the last 20 years with new services opening each year. One barrier to providing specialist palliative care, particularly in the community setting, was restrictive opioid legislation resulting in poor access to adequate analgesia. Local palliative care professionals together with international experts and national authorities succeeded in changing the legislation, resulting in significant changes to national drug policy in Romania. A national education program was delivered to empower medical professionals with skills and knowledge to allow them to prescribe opioid analgesia safely and appropriately.     

Nonwhite ethnicity and the provision of specialist palliative care services: factors affecting doctors' referral patterns

The aim of this paper was to examine the use of palliative care services by members of black/minority ethnic communities. Referral patterns of hospital consultants and general practitioners (GPs) to Birmingham St Mary's Hospice were examined. Semistructured interviews were carried out to explore doctors' perceptions of the benefits and limitations of hospice services for their black/minority ethnic patients and to identify potential barriers to referral. In total, 27 doctors were interviewed: 15 hospital consultants and 12 GP. The GPs were selected according to size of practice within areas of Birmingham with significant black/minority ethnic populations. Referrals received by the hospice for the period April 1996 to November 1997 were collected from the Hospice's computerized database. Results show that, compared to white Europeans, there was an underutilization of day care and inpatient hospice services by members of black/minority ethnic communities. Doctors did, however, refer their black/minority ethnic patients for hospice home-care services: 8.5% of referrals received by the hospice were for nonwhite patients. This referral rate increased to 19.3% in specific postcode areas known to have significant black/minority ethnic communities. Further research is needed to establish levels of awareness, explore attitudes towards palliative care services and assess the demand for specific services within various black/minority ethnic communities.     

An exploration of family carers' experience of respite services in one specialist palliative care unit

BACKGROUND: Changing patterns of care for terminally ill people mean that 90% of patients in the UK now spend the majority of their last year of life at home. It is now widely accepted that supporting individuals to die at home relies heavily on the availability of family carers to provide the majority of the care needed. However, one of the most common reasons for unplanned admissions near the end of life is carers' inability to provide continuing care. One strategy to overcome these challenges has been to offer planned respite care. Despite recent studies, in reality little is known about respite services for patients with life limiting illness, in particular how respite is experienced by the caregivers or to what extent respite services address their needs. METHODS: This prospective study, comprising mixed methods of data collection, explored the experiences of 25 family carers whose relative had been admitted to the local hospice for inpatient respite care. Semi-structured interviews were conducted at two time points: pre- and post-respite. The Relative Stress Scale Inventory was administered at both interviews. RESULTS: Just over half of the sample were caring for a relative with a diagnosis of cancer (n=13); the majority of the others had a number of neurological conditions (n = 12). The data demonstrate that managing care for relatives with a life limiting illness was perceived to be hard work, both physically and mentally. Inpatient respite care was considered important as it enabled family carers to have a break from the ongoing care-giving responsibilities, as well as being an opportunity to experience 'normal life' independently. The majority of family carers felt that their expectations of respite for themselves had been achieved. The respite service was well evaluated in relation to: standard of nursing care; alternative facilities on offer, atmosphere; and other care homes. DISCUSSION: Currently, inpatient respite services are provided to two patient groups--those in the last year of life and those with a chronic life limiting illness. However, on closer analysis, the current model of service delivery, a two-week inpatient stay, may not be best suited to those caring for a relative in the last year of life. Similarly, it might be questioned whether an inpatient hospice is the most suitable setting for those patients needing supportive care, rather than specialist palliative care. The study has raised many issues that need to be considered in the support of carers caring for relatives with a life limiting illness with uncertain trajectories.     

Access to specialist palliative care services by people with severe and persistent mental illness: A retrospective cohort study

Compared to the general population, people with pre‐existing serious and persistent mental illness (SPMI) have higher rates of physical illness and die at an earlier age, raising questions about their palliative and end‐of‐life care needs when they are diagnosed with an incurable physical illness. In the present study, we explored access to specialist palliative care services within one New Zealand health district. Routinely‐collected, de‐identified patient information on a cohort of people diagnosed with SPMI, and receiving specialist palliative care services from the Capital and Coast District Health Board (CCDHB), was compared to the general population from the same health district. People with SPMI are 3.5 times less likely to receive specialist palliative services compared to the general population from the Capital and Coast District Health Board. The proportion of people identifying as Māori is 1.2 times higher in the SPMI cohort than the general CCDHB population. The SPMI cohort experiences a higher level of deprivation compared to the general population in the CCDHB. The present study confirms that those diagnosed with an SPMI are less likely to use specialist palliative care services at the end of life. Research using a national dataset is needed to determine whether the study findings are applicable to the national population.     

Late referral to palliative care services in Korea

ContextAlthough timely referral to palliative care services can help improve quality of life by minimizing patient and family suffering during a life-threatening illness, it remains unclear whether patients in Korea who suffer from advanced cancer are referred to palliative care services in a timely manner.ObjectivesWe aimed to investigate the timeliness of patient referral to palliative care services in Korea by examining the duration of survival after enrollment and identify the factors contributing to earlier or later referral.MethodsPatient- and episode-level data were collected from 3867 terminal cancer patients, who were registered in 34 inpatient palliative care services designated by the Ministry of Health, Welfare, and Family Affairs. Cox proportional hazard models were used to determine factors associated with the duration of survival after enrollment in palliative care services.ResultsThe median duration of survival after enrollment in palliative care services was 18 days. Male sex, liver cancer diagnosis, poor performance status, being covered by National Health Insurance, and being married were significantly associated with shorter duration of survival after enrollment, whereas a prostate cancer diagnosis was associated with longer survival.ConclusionKorean terminal cancer patients are referred to palliative care very late, and the timing appears to be influenced by some socioeconomic and medical factors. Interventions, such as physician education and establishing palliative care teams, are required to promote earlier referrals in Korea.     

Therapeutic relationships in specialist palliative care nursing practice

There has been limited research into the scope or standards of specialist palliative care nursing practice in an Australian context. This study sought to develop a competency framework that described the core domains of specialist palliative care nursing. This article explores one key domain of specialist palliative care nursing practice - therapeutic relationships - that was identified as underpinning other domains of practice. A mixed method was used, involving a literature review, a survey including practice exemplars and an interview of specialist palliative care nurses. Seventy-four registered nurses working in designated specialist palliative care nursing roles from each Australian state and mainland territory were involved. The nurses represented metropolitan, regional, rural and remote communities, various inpatient facilities and community practice settings. Five core domains of specialist palliative care nursing practice were identified: complex supportive care, collaborative practice, leadership, improving practice and therapeutic relationships. Therapeutic relationships were identified as the central domain of specialist palliative care nursing practice to which all other domains were inextricably linked.