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.