Regina McQuillan

Paediatric palliative care delivered by an adult palliative care service

Background: In recent years, the discipline of paediatric palliative care has emerged in response to the awareness of the distinct needs of dying children. To date, in Ireland there is no paediatrician trained in palliative medicine, and specialist paediatric palliative care is generally delivered by adult trained teams. Aims: We wished to examine the experience of an adult palliative care service providing palliative care to children. Methods: The study entailed three stages: (1) a retrospective chart review of all children referred to the service; (2) a questionnaire survey; and (3) a focus group to explore the views of staff in caring for children. Results: The main themes highlighted were staff competence, staff stress, uncertainty of prognosis, resource implications and co-operation with other teams. Conclusion: This study highlights some of the challenges for an adult palliative care team providing paediatric palliative care. Many skills developed for adult patients can be used in paediatric palliative care. Adult palliative care teams and paediatric teams have complementary skills. The challenge is to integrate services to meet the needs of terminally ill children.

Facilitating the care of terminally ill children

Life-threatening illness is fortunately rare in children. Some children, however, will need palliative care for symptom control; psychological support may be needed by the child and the childs family; and families may require help with decisions about life-prolonging treatment. Providing consistent high-quality care for a relatively uncommon problem is difficult. Adult palliative care services, liaison with pediatricians can help provide this care.

The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure.

Patient-centred care (PCC) is recommended in policy documents for chronic heart failure (CHF) service provision, yet it lacks an agreed definition. A systematic review was conducted to identify PCC interventions in CHF and to describe the PCC domains and outcomes. Medline, Embase, CINAHL, PsycINFO, ASSIA, the Cochrane database, clinicaltrials.gov, key journals and citations were searched for original studies on patients with CHF staged II–IV using the New York Heart Association (NYHA) classification. Included interventions actively supported patients to play informed, active roles in decision-making about their goals of care. Search terms included ‘patient-centred care’, ‘quality of life’ and ‘shared decision making’. Of 13,944 screened citations, 15 articles regarding 10 studies were included involving 2540 CHF patients. Three studies were randomised controlled trials, and seven were non-randomised studies. PCC interventions focused on collaborative goal setting between patients and healthcare professionals regarding immediate clinical choices and future care. Core domains included healthcare professional-patient collaboration, identification of patient preferences, patient-identified goals and patient motivation. While the strength of evidence is poor, PCC has been shown to reduce symptom burden, improve health-related quality of life, reduce readmission rates and enhance patient engagement for patients with CHF. There is a small but growing body of evidence, which demonstrates the benefits of a PCC approach to care for CHF patients. Research is needed to identify the key components of effective PCC interventions before being able to deliver on policy recommendations.

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.

Caregiving in ALS - a mixed methods approach to the study of Burden.

BackgroundCaregiver burden affects the physical, psychological and emotional well-being of the caregiver. The purpose of this analysis was to describe an informal caregiver cohort (n = 81), their subjective assessment of burden and difficulties experienced as a result of providing care to people with Amyotrophic Lateral Sclerosis (ALS).MethodsUsing mixed methods of data collection and analysis, we undertook a comprehensive assessment of burden and difficulties associated with informal caregiving in ALS. As part of a semi-structured interview a series of standardised measures were used to assess quality of life, psychological distress and subjective burden, and in an open-ended question caregivers were asked to identify difficult aspects of their caregiving experience.ResultsThe quantitative data show that psychological distress, hours of care provided and lower quality of life, were significant predictors of caregiver burden. From the qualitative data, the caregiving difficulties were thematised around managing the practicalities of the ALS condition, the emotional and psychosocial impact; limitation and restriction, and impact on relationships.ConclusionsThe collection and analysis of quantitative and qualitative data better explores the complexity of caregiver burden in ALS. Understanding the components of burden and the difficulties experienced as a result of caring for someone with ALS allows for better supporting the caregiver, and assessing the impact of burden on the care recipient.

Indigenous ethnic minorities and palliative care: exploring the views of Irish Travellers and palliative care staff

Indigenous people are among the ethnic minorities who encounter palliative care services. This research shows that Irish Travellers have little experience of specialist palliative care and that specialist palliative care providers have little knowledge or experience of Irish Travellers. Characteristics of Irish Travellers culture including the importance of hope, avoidance of open acknowledgment of death, the importance of family and the avoidance of the place of death (including moving away or burning caravans where death has occurred) challenge the provision of specialist palliative care. Individualisation of patient care, a feature of specialist palliative care can help staff provide appropriate care. Palliative Medicine 2007; 21 : 635—641

Review of cancer pain management in patients receiving maintenance methadone therapy.

Methadone is commonly used in the treatment of heroin addiction. Patients with a history of opioid misuse or on methadone maintenance therapy (MMT) with cancer often have difficult to manage pain. We studied 12 patients referred to the palliative care service with cancer pain who were on MMT. All had difficult to control pain, and a third required 5 or more analgesic agents. Two patients had documented ‘‘drug-seeking’’ behavior. Methadone was used subcutaneously as an analgesic agent in 1 patient. We explore why patients on MMT have difficult to manage pain, the optimal management of their pain, and the increasing role of methadone as an analgesic agent in cancer pain.

Do patient-reported measures of symptoms and health status predict mortality in hemodialysis? An assessment of POS-S Renal and EQ-5D

Introduction Experience with the use of patient‐reported outcome measures such as EQ‐5D and the symptom module of the Palliative care Outcome Scale—Renal Version (POS‐S Renal) as mortality prediction tools in hemodialysis is limited.

Left ventricular assist device withdrawal: an ethical discussion

Specialist palliative care (SPC) services are increasingly integrated with chronic heart failure (CHF) services. Left ventricular assist devices (LVADs) represent an advance in the management of advanced CHF, but may pose ethical challenges for SPC services providing care to this population. The patient received an LVAD as ‘bridge-to-heart-transplant,’ but subsequently experienced multiple cerebral haemorrhages, resulting in neurological deficits, and severe functional impairment. The risk of further cerebral events precluded ongoing anticoagulation, and she was transferred to an SPC inpatient unit for symptom control and end-of-life care. Following discussion within the multi-disciplinary team and with the patients family, LVAD support was withdrawn, and the patient died peacefully. This piece reviews the ethical considerations that informed decision-making, in particular, autonomy, informed consent and futility. In addition, the question of the nature of LVADs is debated and how the perceptions of the patient, and others, of the device may influence decision-making around withdrawal of treatment.

Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study

Background: Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients. Aim: To describe the challenges and outline strategies of recruiting advanced chronic heart failure patients. Design: A feasibility study using a pre–post uncontrolled design. Setting: Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in Ireland Results: Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients. Conclusion: Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population.