The NHS cancer plan (Department of Health, 2000) recognised that “the care of the dying must be raised to the level of the best”. The Gold Standards Framework (National Gold Standards Framework Centre | Home), which has been part of the NHS End of Life Care Programme for four years, emphasised advanced care planning where organised care responds to patients’ needs and the end of life care agreed with them.
The World Health Organization developed international recommendations on end of life care planning to support patient choice(Davies and Higginson, 2004). There is also clinical and government support for the Gold Standards Framework and the Liverpool Care Pathway. However, patients’ needs are not being met due to lack of care planning and an increase in the ageing population (Gomes and Higginson, 2006).
Despite more palliative care services, the proportion of people dying at home has not increased (Gomes et al, 2008). Inequalities in terms of hospital and home deaths are still present and research shows that a range of factors are strongly associated with home death, including low functional status and family support (Gomes and Higginson, 2006).
Studies have shown, however, older people over 70 years are less likely to die at home than those in their 50s or 60s (Gomes et al, 2008). This shows that older people are not dying in their preferred place of care and as a result their psychosocial needs are not being met.
The National End of Life Care Programme (Welcome to the National End of Life Care Programme: End of Life Care Programme) aims to achieve world class commissioning for end of life care. The goal is to explore and debate the opportunities and future challenges for commissioning of end of life services.
Figures show that lack of planning, listening to and acting on patients’ needs is still causing ongoing crisis admissions to hospitals (O’Brien and Jack, 2009). There are examples of patients being poorly supervised in side rooms to avoid the busy hospital setting. Dying patients may sometimes be seen as “bed blockers” in busy hospital wards but discharge is difficult because carers feel unable to cope at home. Such a situation can compromise patients’ dignity and lead to inadequate care for vulnerable and dying patients. Major changes are needed to support people dying at home, as by 2012 the number of deaths is expected to rise by 17%, due to an increase in ageing, and consequently deaths and elderly patients living alone (Gomes et al, 2008).
District nurses spend much of their time caring for patients with psychosocial and physical problems, the acutely ill and those in the terminal phase of illness. A key element of practice is to support patients who are dying, enabling them to die pain free, both physically and psychologically. The aim is to give informal carers the opportunity to care in a positive way when death of their loved one is imminent.
In modern culture, the preferred place of death is usually at home (Thomas et al, 2004). However, we need to provide a service for patients who have no family or friends but still wish to die at home, as they often fear dying alone (Gott et al, 2004).
It is not always possible for patients to have a home death and some are best cared for in a hospital or hospice.
Patients suffering from a long term terminal illness or who need acute, complex treatment are more likely to be hospitalised, such as those with cerebral vascular disease or a haematological malignancy.
In addition, some patients still feel there is a stigma surrounding hospices, as they believe they are places where people go “just to die”. It can be difficult for district nurses to explain that this is the best place of care, especially for elderly people who have lived alone for years when their preferred place of care is their home.
District nurses also encounter situations where expert resources are lacking. There is often a need to monitor and evaluate patients’ symptoms and anxiety over 24 hours, and those with family or friends can sometimes become irritable and tired. Relieving pain and symptoms can in some situations hasten death, which may cause distress to inexperienced district nurses.
Further research from diverse cultures is needed on end of life care to ensure good deaths for all terminally ill patients. Palliative care staff face many dilemmas in everyday practice, as race and cultural backgrounds can influence people’s principles and morality. Healthcare professionals need further education to gain an understanding of discrimination and inequality in palliative care (Peckover and Chidlaw, 2007).
Planning for end of life care needs to start openly and honestly, given that primary care specialists have the potential and ability to care for dying patients at home. GPs are ideally placed to identify patients at diagnosis who are likely to require end of life care, which presents an opportunity to discuss patient centred supportive care within primary care with district nurse and specialist nurse input.
Research needs to examine why home deaths have declined and more quantitative data needs to be collected. Geographically, data on the influences of bed availability in hospitals and hospices on the number of “institutionalised deaths” needs to be collected, as well as the experiences of district nurses, GPs and Marie Curie nurses. Hospital episode statistics show where patients with different cancer diagnoses are admitted and the length of stay during the last six months of life. The rate at which patients have died following hospital admission should be studied and qualitative studies should focus on the changes and different patterns of healthcare. These studies may include information about the dying process such as death predictability and the behavioural choices. Social background also needs to be considered.
Technological advances mean that it will be possible to monitor patients and alter treatment remotely using telehealth solutions. Research is currently exploring how medical services in the home can be supported with information and communication technology. This may help provide 24 hour services to dying patients in their home, to reassure relatives that patients’ condition is monitored and assessed without the delays involved in getting healthcare professionals to the home (Fergus et al, 2009).
Death is inevitable; it is not defeat and the journey to the end should be peaceful. The desire to die at home should always be respected as far as possible.
Healthcare professionals can help to ensure a good death for all patients through careful planning and listening to patients throughout their journey. However, complications arise when those dying have no support from informal carers; this may mean formal care is needed.
The only way to resolve many of the issues discussed is to provide 24 hour care. While this is extremely challenging, we must strive to provide a novel approach where technology and health come together in the home.