Rachel Quibell

How integrated are neurology and palliative care services?: Results of a multicentre mapping exercise

BackgroundPatients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services.MethodsThe mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships.ResultsCentres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS).ConclusionsThis mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.

A service evaluation of an integrated model of palliative care of cystic fibrosis.

Background: Patients with advanced cystic fibrosis have severe symptoms with a complex trajectory of exacerbations and recovery. They are often awaiting lung transplantation, and many die without receiving specialist palliative care. Aim: We introduced an integrated model whereby palliative specialists joined the cystic fibrosis team to provide palliative care in parallel with standard care. Design: A service evaluation of this model of care was undertaken in a prospective case series documenting symptoms and outcomes, the views of the cystic fibrosis team and the experience of the palliative specialists. Setting/participants: Over 3 years, 28 (10%) of 282 patients attending the cystic fibrosis centre had specialist palliative care. Results: They had advanced lung disease (mean forced expiratory volume in 1 s (FEV1) = 0.86 L (25% predicted)), and 17 died: 6 were on a transplant waiting list at death; 10 were unsuitable and 1 died post transplantation. All who died over these 3 years had specialist palliative care. Four patients had successful transplants. Assessment showed a high prevalence of breathlessness, cough, pain, vomiting and fatigue, with a significant impact on daily life. The cystic fibrosis team rated this model of care highly, felt that palliative care should be members of the team, and thought that patients had found it helpful. The palliative specialists gained knowledge of cystic fibrosis, found it beneficial to meet patients earlier in the disease, and identified unmet needs in managing bereavement and the effects of deaths on other patients with cystic fibrosis. Conclusion: This model has been successful in overcoming the difficulties in access to specialist palliative care for patients with cystic fibrosis.

Chronic Obstructive Pulmonary Disease

Chronic obstructive pulmonary disease (COPD) is one of the commonest causes of death worldwide. It causes substantial disability which progresses over many years. Patients need a high level of treatment and supportive care throughout the course of the disease. A key goal of treatment is to improve patient-centered outcomes such as quality of life, symptom burden, and the impact of symptoms on the patient’s overall functioning. Palliative care of COPD is particularly complex because of the clinical course of the disease over many years, the unpredictable trajectory of the disease and the fact that patients often die from other causes. End of life issues and anticipatory care planning should be discussed in patients with advanced COPD but disease-specific therapies, emergency management of exacerbations, and palliative supportive care must run in parallel in an integrated manner. The dying phase is often short, over a few days, when the patient fails to recover from the final exacerbation.

Missed opportunities: unnecessary medicine use in patients with lung cancer at the end of life – an international cohort study

The aims of the current study were: (i) to examine the prescribing of preventative medication in a cohort of people with advanced lung cancer on hospital admission and discharge across different healthcare systems; and (ii) to explore the factors that influence preventative medication prescribing at hospital discharge.

P231 A prospective cohort study of integrated palliative care of cystic fibrosis (CF)

There are 140 deaths in the UK each year from CF, often on a transplant waiting list and often without specialist palliative care. A palliative physician and nurse joined our team in 2011, providing palliative care in parallel with standard CF care. We undertook a prospective study documenting symptoms and outcomes, the views of the CF team and the experience of the palliative specialists. Over 3 years, 28 (10%) of 282 patients at our Centre had palliative input; their mean age was 31 (range 18–47) years and mean FEV1 was 0.86 L (24%); 17 (61%) died - 6 were on a transplant waiting list, 10 were unsuitable, and one died post transplantation; 4 have had transplantation and no longer need palliative input, 7 are in on-going care; 15 (88%) of deaths were on the CF ward and 2 at home. All patients who died had had palliative care. The main symptoms were breathlessness, cough, pain, vomiting, fatigue and low mood. The mean palliative assessment score was high at 2.9, indicating that life was dominated by symptoms. Palliative interventions included opioid, benzodiazepine, anti-emetic and anti-depressant medications and non-pharmacological interventions included relaxation techniques, massage, acupuncture and cognitive therapy. A survey was completed by 16 members of the CF team: all felt that palliative specialists should be part of the team and rated the model of care highly with a mean score of 4.1 (scale 1–5); 11 thought that patients had found input very helpful and 5 helpful; one patient declined a palliative consultation. The palliative specialists had increased their knowledge of CF, found it useful to meet patients earlier and had no difficulty in providing palliation in parallel with standard CF care. Their workload was high and they identified additional needs of bereavement counselling and managing the effects of deaths on other CF patients. This integrated model was successful in overcoming barriers to specialist palliative care. Palliative specialists have improved their knowledge of CF and the CF team have learnt palliative skills.

AN INTEGRATED MODEL OF SPECIALIST PALLIATIVE CARE (SPC) FOR CYSTIC FIBROSIS (CF)

Background Specialist palliative care (SPC) for patients with Cystic Fibrosis (CF) is complex as they have severe symptoms requiring active CF treatment and some die on a transplant waiting list, which may be a barrier to referral for SPC. We describe a model of care whereby the SPC team is part of the CF team providing SPC alongside CF care. Results Of 270 CF patients, 20 (9 male; mean age 32.3 (19–47) years) had SPC input over 2 years. They had advanced CF (mean FEV1 25%; BMI 19.7); 9 patients died, 3 underwent successful transplantation and 9 are in ongoing care (2 on active transplant list). Prominent symptoms on assessment were dyspnoea (85%), cough (80%), pain (75%), nausea or vomiting (75%), fatigue (55%) anxiety (50%) and low mood (30%). SPC interventions included drug advice, non-drug measures for management of symptoms (relaxation, massage, acupuncture), practical provision of equipment, activity based therapy, financial advice, and psychosocial and spiritual support. Deaths were in hospital after a short final exacerbation. SPC have been involved in the end of life care of all that died. Evaluation showed that all of the CF team felt that SPC should be a part of the team, and rated SPC highly (mean score 4.1 on a 5 point scale). The CF Team perceived that all patients had found SPC helpful or very helpful. Only one patient awaiting transplant declined SPC input. Conclusions This model is successful in overcoming barriers to SPC and is highly rated by the CF team. The SPC team have developed their knowledge of CF, and find it helpful to meet patients and families earlier. This integrated model of SPC is applicable to other specialist diseases.

A survey of patients with palliative needs on an acute medical admissions unit

Aims To identify any current issues for patients with palliative needs being admitted to an acute medical admissions unit To inform and prioritise the work of the Specialist Palliative Care Team (SPCT) for emergency medical admissions. To map the pathway for patients with palliative and end of life care needs. This work was prompted by a Marie Curie Delivering Choice Programme report1. Methods Two week Pilot Survey followed by a 6 month CNS led Project with data collection. Pilot Survey Patients, with palliative care needs, irrespective of diagnosis were identified by consulting nursing and medical staff and all medical notes each day. Data collected via notes analysis- Demographics GP Reason for admission and any known patient history DNAR Status Discharge Packages of Nursing and Social Care at home Medication Specialist palliative care involvement Results From Pilot Survey Themes: Palliative Care Needs in unit. 24 patients identified in 2 weeks 25% were actually referred to SPCT. 3/24 patients commenced on Liverpool Care Pathway for the Dying and died on unit. Out of Hours Need: 62.5% admitted OOH Referral Source: 29% care homes, 50% A&E Documentation and Information: 71% had DNAR documentation in notes 4% were documented as on GP Palliative Care Register 6 month Project data will be available for poster, and this will contain additional information on palliative care needs and symptoms. Conclusion There are significant palliative care needs on an acute medical admissions unit. This survey will inform the direction and design of palliative care provision on a busy acute medical admissions unit. It also gives invaluable information regarding the patient pathway prior to admission and after discharge from medical admissions to a base ward.