Sarah Barnes

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’.

Quality of life and building design in residential and nursing homes for older people

Older people living in residential and nursing care homes spend a large proportion of their time within the boundaries of the home, and may depend on the environment to compensate for their physical or cognitive frailties. Regulations and guidelines on the design of care buildings have accumulated over time with little knowledge of their impact on the quality of life of building users. The Design in Caring Environments Study (DICE ) collected cross-sectional data on building design and quality of life in 38 care homes in and near Sheffield, Yorkshire. Quality of life was assessed using methods which included all residents regardless of their frailty, and staff morale was also assessed. The physical environment was measured on 11 user-related domains using a new tool, the Sheffield Care Environment Assessment Matrix (SCEAM). Significant positive associations were found between several aspects of the built environment and the residents’ quality of life. There was evidence that a focus on safety and health requirements could be creating risk-averse environments which act against quality of life, particularly for the least frail residents. Staff morale was associated with attributes of a noninstitutional environment for residents rather than with the facilities provided for the staff. The new tool for assessing building design has potential applications in further research and for care providers.

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.

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.

The design of caring environments and the quality of life of older people

There has been little systematic research into the design of care environments for older people. This article reviews empirical studies from both the architectural and the psychological literature. It outlines the instruments that are currently available for measuring both the environment and the quality of life of older people, and it summarises the evidence on the layout of buildings, the sensory environment and the privacy of residents. The conclusion is drawn that all evidence-based design must be a compromise or dynamic and, as demands on the caring environment change over time, this compromise must be re-visited in the form of post-occupancy evaluation.

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.

The hospital environment for end of life care of older adults and their families: an integrative review

AIM   This article is a report of an integrative review to identify key elements of the physical hospital environment for end of life care of older adults and their families as reported by patients, relatives, staff and policy makers. BACKGROUND   Globally ageing populations and increases in long-term illness mean that more people will need palliative care in the future. Despite policy initiatives to increase end of life care in the community, many older adults prefer, and will require, end of life care in hospital. Providing an appropriate physical environment for older adults requiring end of life care is important given concerns about hospital environments for this group. DATA SOURCES   Thirteen databases from 1966 to 2010 were searched including ASSIA, BNI, Cochrane Library, CINAHL, EMBASE, MEDLINE, PsycINFO, Social Science Citation Index, the Science Citation Index, HMIC and the National Research Register. Reference and citation tracking was performed on included publications. REVIEW METHODS   An integrative review was conducted. Two reviewers independently screened titles and abstracts for inclusion and completed data extraction. Study quality is not reported as this poses methodological difficulties in integrative reviews. Data synthesis involved thematic analysis informed by the findings of included literature. RESULTS   Ten articles were included. Four themes were identified: privacy as needed; proximity (physically and emotionally) to loved ones, home and nature; satisfaction with the physical environment; and deficiencies in physical environment. CONCLUSION   Little evidence exists about physical hospital environments for end of life care of older adults and their families. More research is required in this field.

Space, Choice and Control, and Quality of Life in Care Settings for Older People

This cross-sectional study aims to establish whether gradation of space and daytime location are associated with quality of life in care home residents, irrespective of dependency. Thirty-eight homes and 452 residents are recruited. Quality of life measures used are as follows: observation of the time residents spent in active behavior and observation of well-being, both derived from Dementia Care Mapping, and a measure of environmental control. Residents in homes providing more gradation of space have higher observed well-being and environmental control, and those spending the day located in their own rooms have higher observed active behavior and environmental control. Higher dependency residents are more likely to be located in lounges. Gradation of space is associated with resident quality of life, highlighting the necessity for design guidance to emphasize a variety of spaces. However, well-designed buildings with a variety of spaces can offer little choice to residents if access to different daytime locations is restricted.