Hospice care continues to meet the needs of only a minority of patients who have specialist palliative care needs, either because prognosis is uncertain, patients themselves are not ready to accept ‘hospice’ or referrer/referee do not directly consider palliative care needs or prognosis. Indeed, many patients with non-cancer diagnoses will never see a palliative care specialist despite complex symptomatology and psychological morbidity. Recognising this gap, St Wilfrid’s Hospice developed a pilot clinic to bridge a gap in provision: accepting any patient with complex physical or psychological symptoms needing specialist clinical support/advice -associated with a chronic life-limiting illness of any diagnosis (or its treatment related symptom burden.) Prognosis could exceed 12 months (unlike hospice criteria) or be unestablished/uncertain. The clinic aims were to promote proactive management- including self-management of symptoms, provide information for both patient and carers, offer an advance care planning course and breathlessness/fatigue management course, and provide general emotional support. The multidisciplinary team included a palliative care consultant, 2 CNSs, occupational and physiotherapy, a complementary/art therapy and a volunteer.
65 patients were referred (9 declined input, one died before seen, six were too unwell), 40% of these had non- cancer diagnoses. 60% of referrals came from secondary care (commonest specialities-respiratory, neurology and urology.) Of the 49 patients seen in OSCC, 21 were later transferred to the main hospice caseload as their illness progressed; 12 then died once under the care of the main hospice, all of whom had completed advance care planning before transfer. Patients able to self-report symptoms completed Edmonton Symptom Assessment Scores (ESAS) at initial and follow up consultation. Most striking was the significant degree of psychological distress reported by 85% of the patients and cited as the main reason for referral. This was reflected in higher ESAS scores in the psychological domain and an impact on wellbeing scores.
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