David Seamark

Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers: An interpretative phenomenological analysis

Background: A study designed to explore the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their carers, particularly with regard to ongoing and palliative care needs. Methods: The participants were nine men and one woman with severe COPD and the carers of eight of the men, in East Devon, UK. Semi-structured interviews were undertaken, transcribed and analysed using interpretative phenomenological analysis (IPA). Results: The emergent themes were of losses, adaptation, relationships with health professionals and effect on carer. Losses reflected the loss of personal liberty and dignity and of previous expectations of the future. Adaptation included strategies to cope with the effects of the disease. Relationships related to both positive and negative aspects of contact with health professionals. There was appreciation for continuity of care and reassurance. The effect on the carer was evident particularly as they had to take on multiple roles. They also experienced some of the same losses as the patient and appeared enmeshed with the illness. Conclusions: This study confirmed the inexorable decline in activities of daily life and social isolation for patients with severe COPD. Adaptive strategies were common and some positive aspects were identified. Support from the primary health care team was appreciated. The strain on carers was very apparent. The concept of a more structured sharing of information and a surveillance role mediated by health care professionals known to the patient and carer would be a pragmatic approach to improving care.

Barriers to advance care planning in chronic obstructive pulmonary disease

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’.

Dying trajectories in heart failure

Objectives: To explore dying trajectories in heart failure. Design: Prospective, longitudinal study. Setting: Sixteen GP surgeries in four demographically contrasting areas of the UK. Participants: A total of 27 heart failure patients, >60 years of age, who completed questionnaires for at least five time-points before death. Main outcome measures: Kansas City Cardiomyopathy Questionnaire Physical Limitation Scale. Results: No ‘typical’ dying trajectory could be identified, and only a minority of patients conformed to the theoretical trajectory of dying in heart failure. Conclusions: This study provides the first prospective data regarding physical decline prior to death in heart failure. Findings challenge current efforts to plan and deliver palliative care services on the basis of the theoretical heart failure dying trajectory.

Towards a theory of continuity of care

As a principle of healthcare planning, continuity of care is losing ground. It is increasingly being superseded by other principles—notably, accessibility and plurality of provision. Baker1 has identified the pressures and Hjortdahl2 writes of continuity ‘going out of style’. National Health Service (NHS) walk-in centres provide open-access primary care on sites separate from general practices and staffed by different people. For the first time, it is possible that continuity of care will be phased out of NHS planning. If this happens, what will be the consequences for patients and doctors? Over many years a research group in Exeter, including all the authors of this paper, has been developing a theory of continuity, based partly on clinical experience and partly on published evidence. The essence of the Exeter theory is that, in primary care, a ‘personal doctor’ with accumulating knowledge of the patient’s history, values, hopes and fears will provide better care than a similarly qualified doctor who lacks such knowledge; and that the benefits of such continuity will include not only greater satisfaction for the patient but also more efficient consultations, better preventive care and lower costs. When we assess continuity in primary care, the duration of registration with the general practitioner (GP) is only one background factor. A more important consideration is the total time the patient and doctor have been in direct communication; and this will include contacts about third parties, such as a child, or an elderly relative during a home visit. We recognize that continuity can have disadvantages; for example, a fresh eye may see what the familiar eye has missed. In this paper we examine the published evidence for and against continuity in primary care.

Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying

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.

Exploring the care needs of patients with advanced COPD: An overview of the literature

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.

Enhancing Patient-Professional Communication About End-of-Life Issues in Life-Limiting Conditions: A Critical Review of the Literature

CONTEXT The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. OBJECTIVES To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. METHODS A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. RESULTS Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. CONCLUSION Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.

Recruiting older people into a large, community-based study of heart failure

This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II—IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK. Ethical issues arising around gate-keeping, terminology and participant burden are discussed along with challenges faced during the recruitment process. Strategies to increase general practitioner and patient recruitment are provided. The paper concludes that prospective longitudinal studies are of particular relevance to chronic illness, and the complexity of setting up such research must be acknowledged and appropriately resourced.

Caring for the Dying at Home

Most people, when asked where they would wish to die, will say in their own home, supported by family and healthcare professionals known to them. At present, many instead die in hospital, and in Caring for the Dying at Home Keri Thomas shows how existing structures can be strengthened to allow more people to achieve their wish for a home death. Written in the main by a general practitioner, the book deals with three related areas in some depth. The middle section has contributions from a palliative care consultant and deals with key features of palliative care for patients with common cancers. This section is perhaps the weakest, not providing sufficient detail to answer practical questions that arise day-to-day in the care of the dying. The first part entitled ‘Palliative care at home: why is it important?’ explores the changing face of medicine and attitudes to death and dying. An overview of the palliative care movement and ways of integrating care of the dying involving specialist care in the context of the primary healthcare team provides the setting for the main thrust of the book, which is a description of the Macmillan Gold Standards Framework (GSF). This is a phased programme designed to raise the standard of end-of-life care in the community. Too often end-of-life care has been delivered in an uncoordinated fashion and not based on best evidence. This is not surprising considering the rising workload in primary care, the effect of an ageing population, the lack of resources at community level and the professional isolation experienced by many general practitioners. The GSF seeks to address problems of lack of coordination, poor communication and professional isolation by taking a primary care team through a stepwise process over a period of 6-12 months. The steps are referred to as the seven Cs—namely, communication; coordination; control of symptoms; continuity; continued learning; carer support; and care of the dying (terminal phase). Rather than just deliver yet another set of guidelines to an already beleaguered primary care profession, Macmillan have actually tested the GSF initiative and Keri Thomas is involved in qualitative and quantitative evaluation of the scheme. Practices registering for the GSF programme receive practical support from a local Macmillan facilitator, a toolkit, conferences relevant to the programme and the offer of evaluation of the practices progress. Keri Thomas writes with conviction, her own life being touched by personal tragedy. The book is laced with quotations from participating health professionals and patients that help break up the text and bring alive the issues under debate. At times one feels that lecture notes are being too closely followed (with references to Maslow, needs/support matrices and Venn diagrams), but the section on bereavement and accompanying sources of help and words of wisdom I found moving and helpful for my future practice. So who needs to read/refer to this book? I think a practice team conscious of the need to improve and maintain end-of-life care, particularly with the destabilizing effect of opting out of 24-hour responsibility under the new GP contract, will do well to study the Gold Standard Framework. Primary care organizations (possibly through their cancer-lead) ought to consider the Macmillan GSF, particularly in the likely event of practices ceasing their 24-hour commitment. An adequately resourced initiative led by a primary care trust could confidently expect to improve care for those dying at home. Finally, the primary health-care professional wishing to develop an interest in end-of-life care would find the chapter on Evidence-based Care, with some ninety useful references, a good starting-point.

Are postbereavement research interviews distressing to carers? Lessons learned from palliative care research

Research into the quality and impact of palliative care for patients and carers has expanded dramatically over the past 25 years. The work of Parkes was prominent in the use of postbereavement interviews in the assessment of the impact of the death and dying of a patient on the surviving spouse.1,2 A number of large, methodologically rigorous studies of caring for the dying have been published which involved interviewing bereaved carers.3–5 Such interviews can be viewed as being either intrusive or beneficial to the carer and this has implications when seeking ethical approval for such studies.5 This short report seeks to show some of the lessons learned from a research project designed to examine terminal cancer care provided by community hospitals and an inpatient hospice.