BACKGROUND: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models. AIM: To describes how patients and carers view health and social care in the last year of life. METHODS: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis. RESULTS: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent. CONCLUSIONS: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.

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PubMed2004

Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers.

BACKGROUND: We set out to explore whether patients with life-threatening illnesses and their informal carers consider they experience significant spiritual needs, in the context of their overall needs, how spiritual concerns might vary by illness group and over the course of the illness, and how patients and their carers think they might be supported in addressing spiritual issues. METHODS: Three-monthly qualitative interviews for up to one year with 20 patients with inoperable lung cancer and 20 patients with end-stage heart failure and their informal carers. RESULTS: We conducted 149 in-depth interviews. Spiritual concerns were important for many patients in both groups, both early and later in the illness progression. Whether or not patients and carers held religious beliefs, they expressed needs for love, meaning, purpose and sometimes transcendence. The different experiences of lung cancer and heart failure raised contrasting patterns of spiritual issues and needs. Carers voiced their own spiritual needs. Patients and carers were generally reluctant to raise spiritual issues, but many, in the context of a developing relationship with the researcher, were able to talk about such needs. CONCLUSIONS: Spiritual issues were significant for many patients in their last year of life and their carers. Many health professionals lack the necessary time and skills to uncover and address such issues. Creating the opportunity for patients and carers to discuss spiritual issues, if they wish, requires highly developed communication skills and adequate time.

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PubMed2003

Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers.

OBJECTIVE: To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country. DESIGN: Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews. SETTINGS: Lothian region, Scotland, and Meru District, Kenya. PARTICIPANTS: Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers. MAIN OUTCOME MEASURES: Descriptions of experiences, needs, and available services. RESULTS: 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet. CONCLUSIONS: In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.

Adaptation, Psychological↗

PubMed2003

A good death in rural Kenya? Listening to Meru patients and their families talk about care needs at the end of life.

What constitutes a good death sub-Saharan Africa? In Meru District in Eastern Kenya, we listened to 32 patients with ongoing cancer or AIDS, and to their carers as they talked about end-of-life experiences and care needs. Patients described how the support of close family relationships, and the care shown by their community and religious fellowships helped meet many of their emotional, social, and spiritual needs. But physical needs often went unmet. Patients died in pain. Some suffered in poverty, others were troubled by the guilt of using all available family resources to pay for treatment and care. Accessible pain relief, affordable clinic or inpatient care when required, and help to cope with the burden of care were among the key needs of patients. Until these are available, many will not die well.

Adolescent↗

PubMed2003

General practitioners and their possible role in providing spiritual care: a qualitative study.

We interviewed the general practitioners (GPs) of 40 patients with life-threatening illnesses over the course of the last year of life. We asked them to identify their patients' holistic needs, and to discuss whether they considered that they had a role in providing 'spiritual care'. The GPs varied greatly in their understanding of their patients' experiences and needs. Most said that they had a role in providing spiritual care, but hesitated to raise spiritual issues with patients, mentioning lack of time, a feeling that they should wait for a cue, or being unprepared or unskilled.

Attitude of Health Personnel↗

PubMed2002

Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community.

OBJECTIVE: To compare the illness trajectories, needs, and service use of patients with cancer and those with advanced non-malignant disease. DESIGN: Qualitative interviews every three months for up to one year with patients, their carers, and key professional carers. Two multidisciplinary focus groups. SETTING: Community based. PARTICIPANTS: 20 patients with inoperable lung cancer and 20 patients with advanced cardiac failure and their main informal and professional carers. MAIN OUTCOME MEASURES: Perspectives of patients and carers about their needs and available services. RESULTS: 219 qualitative interviews were carried out. Patients with cardiac failure had a different illness trajectory from the more linear and predictable course of patients with lung cancer. Patients with cardiac failure also had less information about and poorer understanding of their condition and prognosis and were less involved in decision making. The prime concern of patients with lung cancer and their carers was facing death. Frustration, progressive losses, social isolation, and the stress of balancing and monitoring a complex medication regimen dominated the lives of patients with cardiac failure. More health and social services including financial benefits were available to those with lung cancer, although they were not always used effectively. Cardiac patients received less health, social, and palliative care services, and care was often poorly coordinated. CONCLUSIONS: Care for people with advanced progressive illnesses is currently prioritised by diagnosis rather than need. End of life care for patients with advanced cardiac failure and other non-malignant diseases should be proactive and designed to meet their specific needs.

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