End-of-life care in two Norwegian nursing homes: family perspectives
- Correspondence to Bridget M Johnston
School of Nursing, University of Dundee, 11 Airlie Place, Dundee DD1 4HJ, Dundee, UK;
Implications for practice and research nursing practice
■ ‘Good care’ and a good death as far as relatives of care home residents are concerned includes taking care of the family; being treated with dignity and respect; attention to detail in terms of physical care as well as good symptom control.
■ Excellent communication from the nurse is of great importance to families.
■ Patients dying alone at night caused the most distress. There was also room for improvement concerning mouth care.
■ Further research is needed from the older care home residents' viewpoint about what constitutes a good death and good care.
■ Further research is needed to evaluate the effectiveness of educational interventions for nurses and care staff aimed at improving communication skills and physical care for care home residents.
End-of-life care is provided in a variety of contexts around the world including home, hospital and hospice, with most people, particularly in the UK and North America dying in hospitals.1 However, a growing number of older people, 23% of people older than 65 die in nursing (care) homes.2 3
Moreover, there had a been a paradigm shift, endorsed by the WHO,4 moving the focus from a traditional model of palliative and end-of-life care focusing on cancer to a model that is inclusive of all patients with chronic progressive illness, regardless of diagnosis. The WHO monograph also notes that palliative care should be part of the overall health policy for older people and become an integral part of the services they receive.4The quality of care provided to older people in care homes is a significant priority.
The study focused on service improvement in Norwegian care homes. The aim of the study was to gain an overview of existing end-of-life care, by exploring the experiences of relatives of people who had died in a nursing home. Data were collected via structured interviews with 50 relatives from two nursing homes.
The majority of relatives found the nursing care to be good. However, one third were dissatisfied with the amount of information or the way in which communication was provided to them. Although the majority of relatives perceived that that their loved one had a ‘good death’, one third believed that the person who had died had troublesome symptoms including pain, as well as inadequate mouth care. Five relatives were unhappy that their loved one had ‘died alone’.
This study adds to the body of knowledge regarding family experiences of end-of-life care in care (nursing) homes. It would have been useful, however, to gain the perspective of the residents themselves of their own end-of-life care. Although there are ethical and moral implications of collecting data from older people at the end of life, other research has shown that these data aer valuable and a key driver to instigate change.5 6
The author states that this study is a mixed method design, and that a ‘concurrent triangulation’ design was adopted, where collection of both qualitative and quantitative design was performed at the same time. However, only one measure was used, a specifically developed questionnaire that incorporated open and closed questions. This study would, therefore, have been more accurately described as a survey.
Compassionate, dignified care is the right of all dying people regardless of age or diagnosis. All healthcare personnel and care staff, in care homes, need to see improving the quality of end-of-life care as a fundamental priority.