Background There is a lack of significant literature on provision of Supportive and Palliative care (SPC) for Lung transplant patients pre and post surgery.
Aims A baseline audit of patients was undertaken to identify SPC access in the last year of life.
Data collection Patients who died in 2010 on the lung transplant waiting list or had lung or heart and lung transplants were audited retrospectively. Patient demographics and end of life data were collected.
Results In 2010 50% of post lung transplant patients who died were in Harefield Hospital. Most had SPC involvement but often late. One died in a hospice and none were known to die at home. Patients sometimes refused SPC referrals until very late. Communication to GPs rarely mentioned SPC. Most patients on the waiting list died in local hospitals.
Limitations of Data collection There was a dearth of information for patients who died outside HH, and with one exception, there was no SPC data. This highlighted the difficulty of following the patient's journey through the healthcare system.
The NHS spine data only includes date of death.
Staff report anecdotally that conversations about advance care planning are often not documented.
Future audits Contact GPs to collect data.
Outcomes Action planning following this audit includes:
1) Weekly meetings between Transplant and SPC to discuss patients who are cause for concern with audited outcomes.
2) All patients on the waiting list will have access to Supportive care.
3) Place of death has now been included on hospital systems.
4) Improving access to SPC will increase support and services available to patients; families; carers and staff.
Other specialist centres managing complex patients with organ failure face similar challenges and may consider a similar approach.
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