7 research outputs found
Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life
Background: Advance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic.
Aim: To investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life.
Design and data collection: Qualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total.
Setting: General practices and community care settings in the East Midlands of England.
Findings: The study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare.
Conclusions: Advance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity.
Future work: Attention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care.
Funding: The National Institute for Health Research Health Services and Delivery Research programme
Social policy for people with dementia in England: promoting human rights?
This paper discusses whether current UK social policy promotes the human rights of people with dementia living in England. The author focuses on the role of recent legal reforms and key developments in social care policy – notably the Mental Capacity Act 2005 and the 2009 National Dementia Strategy – in facilitating their human rights to liberty and self-determination, particularly a right to choose to live at home. The extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care is critiqued. Whilst recent legislative change has endorsed the rights of people with dementia to liberty and self-determination, it is suggested there is a lack of commitment in government policy more generally to providing access to social care to enable people with dementia to exercise these human rights
Human rights, citizenship and dementia care nursing
Background. Human rights and citizenship are concepts widely used in health and social care literature. However, they are applied less frequently and less rigorously in dementia care. This paper briefly presents these concepts before exploring how they have been applied to dementia care policy and practice. We highlight areas of dementia care where human rights can be violated and citizenship can be denied. We suggest reasons why people with dementia can be denied their human and civil rights and discuss how such concepts provide a way to address cultural and practice change in dementia care.Aims and objectives. To demonstrate how these concepts can be used to challengeand improve dementia care nursing.Conclusions. This paper contributes to emerging discussion about dementia carenursing by challenging conventional ways of understanding dementia and the carepractices that result. Taking a rights-based approach allows nurses to examineinequity in services and address poor practice.Implications for practice. Looking at dementia through the lenses of citizenship and human rights provides a way to broaden the scope of contemporary dementia carenursing, to enable nurses to challenge inequity and to develop and improve thedirect nursing care offered to people with dementia