• Barriers to advance care planning in chronic obstructive pulmonary disease

      Gott, M.; Gardiner, C.; Small, Neil A.; Payne, S.; Seamark, D.; Barnes, S.; Halpin, D.; Ruse, C. (2009)
      The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of 'end of life' within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy's recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of 'continuous palliation'.
    • Enhancing Patient-Professional Communication About End-of-Life Issues in Life-Limiting Conditions: A Critical Review of the Literature.

      Barnes, S.; Gardiner, C.; Gott, M.; Payne, S.; Chady, B.; Small, Neil A.; Seamark, D.; Halpin, D. (2012)
    • Exploring the care needs of patients with advanced COPD: an overview of the literature

      Gardiner, C.; Gott, M.; Payne, S.; Small, Neil A.; Barnes, S.; Halpin, D.; Ruse, C.; Seamark, D. (2010)
      Chronic obstructive pulmonary disease (COPD) is a highly prevalent condition worldwide and is associated with significant mortality. This paper gives an overview of the relevant literature regarding care needs in advanced COPD from the perspective of the patient or carer, and aims to explore the appropriateness of a palliative care approach in this group. Publications revealed that patients with COPD have a high symptom burden that impacts on quality of life and social functioning. Information provision in COPD is often lacking and the implications of diagnosis and prognosis are not routinely discussed. The impact on families and carers is considerable, many patients have significant care requirements which can affect family relationships. Although patients with COPD have regular contact with health services, access to specialist services and palliative care is poor. This paper highlights the need for increased provision for palliative care in COPD, alongside dedicated education and training for health professionals, and continued research to identify the most appropriate ways of delivering this care.
    • Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying

      Gardiner, C.; Gott, M.; Small, Neil A.; Payne, S.; Seamark, D.; Barnes, S.; Halpin, D.; Ruse, C. (2009)
      Prognosis in COPD is poor and many patients perceive shortcomings in the education they receive about aspects of their condition. This study explores the experiences of patients with COPD, particularly fears surrounding death and dying. Semi-structured interviews were conducted with 21 patients with moderate or severe COPD. Findings revealed that patient understanding of COPD was poor, most patients were unaware of the progressive nature of the condition, and few were aware they could die of COPD. Despite this, patients often expressed concerns that their condition might deteriorate. Patients had particular concerns regarding the manner of their death; the overriding fear was dying of breathlessness or suffocation. None of the patients' had discussed these fears with a health care professional. Improved patient education is needed in order to improve patients understanding of their condition and prognosis. Open communication regarding death, as advocated in a palliative care approach, is also appropriate to alleviate patients fears and to allow them to make decisions regarding the management of their care at the end of life.
    • Using a prediction of death in the next 12 months as a prompt for referral to palliative care acts to the detriment of patients with heart failure and chronic obstructive pulmonary disease

      Small, Neil A.; Gardiner, C.; Barnes, S.; Gott, M.; Payne, S.; Seamark, D.; Halpin, D.
      Dear Editor In undertaking studies of palliative care in heart failure and chronic obstructive pulmonary disease (COPD) in the UK, we identified procedural, conceptual and ethical challenges that may arise from one feature of The End of Life Care Strategy for England.1 The strategy presents the question, ‘Would I be surprised if the person in front of me was to die in the next six months or one year?’ as a prompt to initiate discussion of endof-life care needs and preferences (paragraph 3.23). We believe this question is inappropriate in heart failure and COPD and its use will inhibit the initiation of a palliative care approach with these patients.
    • You get old, you get breathless, and you die: chronic obstructive pulmonary disease in Barnsley, UK

      Small, Neil A.; Gardiner, C.; Barnes, S.; Gott, M.; Halpin, D.; Payne, S.; Seamark, D. (2012)
      We report patients, family members and health professionals' experiences of Chronic Obstructive Pulmonary Disease (COPD) in Barnsley, northern England. A widespread belief that having "bad lungs" is part of normal ageing shapes everyday experience in this former mining town. People with COPD, and their families, link its cause to the areas industrial past and are sceptical of a medical orthodoxy that attributes cause to smoking. They doubt doctors' objectivity. Encouraging uptake of care, promoting smoking cessation, and developing care planning would be enhanced by engaging with the significance of place in the social narrative of health evident in this town.