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The challenge of patients' unmet palliative care needs in the final stages of chronic illness

Nursing Research and Development, Belfast City Hospital, Belfast, BT9 7AB, Donna.fitzsimons{at}bch.n-i.nhs.uk, Institute of Nursing Research, University of Ulster, Co. Antrium, BT37 OQB, Northern Ireland

D. Mullan

City Hospital, Belfast

J.S. Wilson

City Hospital, Belfast

B. Conway

City Hospital, Belfast

B. Corcoran

Palliative Medicine, Belfast City Hospital, Belfast

M. Dempster

Psychology Department, Queen's University of Belfast, Belfast

J. Gamble

Belfast City Hospital, Belfast

C. Stewart

Belfast City Hospital, Belfast

S. Rafferty

Belfast City Hospital, Belfast

M. McMahon

Belfast City Hospital, Belfast

J. MacMahon

Belfast City Hospital, Belfast

P. Mulholland

Belfast City Hospital, Belfast

P. Stockdale

Belfast City Hospital, Belfast

E. Chew

Belfast City Hospital, Belfast

L. Hanna

Belfast City Hospital, Belfast

J. Brown

Belfast City Hospital, Belfast

G. Ferguson

Belfast City Hospital, Belfast

D. Fogarty

Belfast City Hospital, Belfast

Background : There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim : This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n = 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods : The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n = 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n = 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi's approach to qualitative analysis. Findings : Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual's disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients' future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion : Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual's holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed. Palliative Medicine 2007; 21 : 313—322

Key Words: case study • chronic illness • heart failure • palliative care • renal failure • respiratory failure

Palliative Medicine, Vol. 21, No. 4, 313-322 (2007)
DOI: 10.1177/0269216307077711


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