Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals

To identify doctors' perceptions of the need for palliative care for heart failure and barriers to change. Qualitative study with focus groups. North west England. General practitioners and consultants in cardiology, geriatrics, palliative care, and general medicine. Doctors supported the development of palliative care for patients with heart failure with the general practitioner as a central figure. They were reluctant to endorse expansion of specialist palliative care services. Barriers to developing approaches to palliative care in heart failure related to three main areas: the organisation of health care, the unpredictable course of heart failure, and the doctors' understanding of roles. The health system was thought to work against provision of holistic care, exacerbated by issues of professional rivalry and control. The priorities identified for the future were developing the role of the nurse, better community support for primary care, and enhanced communication between all the health professionals involved in the care of patients with heart failure. Greater consideration should be given to the care of patients dying with heart failure, clarifying the roles of doctors and nurses in different specialties, and reshaping the services provided for them. Many of the organisational and professional issues are not peculiar to patients dying with heart failure, and addressing such concerns as the lack of coordination and continuity in medical care would benefit all patients.

Although studies have found that 50-70% of cancer patients would prefer to die at home, there has been a trend towards the hospitalization of the dying in many countries. No study has attempted to analyse the changes in place of death in detail. The aim was to analyse the 10-year trends in place of death of cancer patients, by region and by diagnosis, within England. To do this, data on the place of death and patients' characteristics were derived from death registrations for all cancer deaths between the years 1985-94. We examined trends in the place of death for the whole of England, for each region separately and for the main cancer diagnoses. The results show that there were over 1.3 million death registrations from cancer during the 10 years. The mean age increased over the period from 69.9 years in 1985, to 71.3 years in 1994. The percentage who died in a UK National Health Service (NHS) hospital or nursing home fell gradually from 58% (1985) to 47.3% (1994), while the percentage who died in non-NHS hospitals, nursing homes, hospices and communal establishments increased. The percentage who died at home fell slightly but steadily between 1985 and 1992 from 27% to 25.5% and since then increased slightly to 26.5% in 1994. The percentage of home deaths was lowest in the two Thames regions (less than 25%) and highest in the West Midlands, Anglia and Oxford (over 29%). These differentials were maintained across age groups and diagnoses. Older people and women were less likely to die at home than younger people and men. Significant trends showing an increase in home deaths were found in two regions: North Thames and South Thames. Patients with cancers of the lung, colorectum, respiratory organs, bone or connective tissue and lip, oral cavity and pharynx were more likely to die at home (over 29% in 1994) than patients with cancers of the (breast (women, 25% in 1994) or the lymphatic or haematological system 16% in 1994). It can be concluded that the trend towards a reducing home death rate from cancer in England appears to have halted, although this varies between regions. This has implications for primary care services. Although hospital is still the most common place of death from cancer, the percentage of cancer patients who die in hospital is reducing. The largest rise is in the increasing use of hospices and communal establishments, including residential and nursing homes. Given the ageing population, this trend is likely to continue.

The nation has an ample supply of hospice programs and, through Medicare, Medicaid, or employee-sponsored health insurance, most people have nearly full coverage for hospice care. Yet, less than one third of dying persons use hospice care. Little is known about what prevents physicians from referring to hospice care and how effective hospices are in reaching out to physicians to generate referrals. In 1999, we conducted in-depth telephone interviews with 30 experts in hospice care across the country and made site visits to four different hospice programs. The interviewees identified numerous barriers to accessing hospice care that are complex and often overlapping. Some barriers relate to physicians and other health care professionals, such as their difficulty accepting death and their lack of education in end-of-life care. Other barriers are the result of patient/family misinformation and aspects of the hospice system that limit the number and types of patients deemed appropriate for hospice care. Factors that facilitate hospice referrals (which we call enablers) are also numerous and include active efforts by hospices to educate and reach out to physicians and consumers, as well as physicians' practice styles. The research provided powerful validation of trends that hospice and palliative care providers in the trenches have been describing anecdotally for several years. Ultimately, this information could be used to develop a toolkit for hospices and palliative care organizations to assist them with marketing and physician outreach.