Managing patients with end-stage cirrhosis unsuitable for liver-transplantation is challenging because of unpredictable disease trajectory, complex psychosocial needs, and lack of experience in primary care. Consequently most patients with end-stage cirrhosis die in hospital. We have recently implemented the ‘Thinking Ahead’ clinic (TAC), and report the design and outcomes from the clinical, patient and carer perspectives.
The cornerstones (results) of TAP are as follows
An advanced care planning MDT: focuses on case-identification, defining prognosis and performance status. Over 18 months, 39 out of 47 patients were identified as being suitable for ‘TAC’.
The nurse-led ‘Thinking Ahead’ Clinic: focuses on support and understanding regarding identification of end-stage cirrhosis, explores fears, anxieties and future plans, including resuscitation and treatment escalation decisions and preferred place of care.
The advanced care planning register: (4/39) generates an automated email alert to the Hepatology team triggered by an emergency department (ED) attendance enabling rapid specialist review.
Planned Domiciliary visits: undertaken in 27 patients that had no further hospital episodes subsequently.
Emergency domiciliary visits: Five joint palliative care ‘rescue’ domiciliary visits were performed, enabling recognition of last hours/days of life, avoiding hospital admission.
Management of refractory ascites: 13 patients with paracentesis dependent ascites received permanent Rocket drains, avoiding further hospital admission and facilitated participation in the ReDUCE Trial.
100% identified home as their preferred place of death this was met in 93% of patient cohort.
Bereavement follow-up: telephone contact to carers post-bereavement, enabled an opportunity to resolve issues and offer some closure.
Conclusion ‘Thinking Ahead’ provides a model of patient focused holistic care by offering a staged and open approach to identifying end-of-life patients, ensuring robust multi-professional decision making, and a setting for advanced care-planning decisions. Most patients preferred place of care was home; 93% died at home through TAC.
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