Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care
For many of us palliative care is associated with elderly and terminally ill patients. Unfortunately, many children also suffer from life-threatening conditions. Children are often unable to provide their perspective on the quality of end-of-life care they receive due to young age or the type of illness they have. In a study published in BMC Palliative Care in January 2015, Widger and colleagues describe that pediatric palliative care is hindered by the lack of a well-defined and reliable method for measuring the quality of end-of-life care in children. The researchers believe that parents are the best proxy for the experience of their child. The study therefore tried to develop and test an instrument to measure mothers’ perspectives on the quality of care received before, at the time of, and following a child’s death.
In this study, the researchers used literature search, focus groups and psychometric testing in order to provide a valid and reliable way to include the voice of bereaved parents in assessing the quality of end-of-life care for children. The outcome is the identification of 10 domains important to high quality care and a method for measuring quality care. These findings are valuable for health care professionals and decision-makers to support children and their families during a time of great suffering.
‘I want to feel at home’: establishing what aspects of environmental design are important to people with dementia nearing the end of life
Not many people know the environment in which their lives will come to an end. The design of the environment in which dementia patients live has been explored by researchers in the past. It should reinforce personal identity and aid in maintaining their abilities. What about dementia patients nearing the end of their lives? Have people suffering from dementia and who are under palliative care special requirements? In this study published in BMC Palliative Care in May 2015, researchers investigated the aspects of the physical environment that are important to support a good quality of life in the palliative approach of dementia patients.
Richard Fleming and colleagues set up focus groups at three sites on the east coast of Australia. These included recently bereaved family carers, people with dementia and health care professionals working with dementia patients on a palliative care ward. The latter group defined design to facilitate a good duty of care as the most important. Dementia patients and family carers on the other hand articulated the importance of being in a calm, private environment where they can feel at home. Furthermore, having comfort through engagement and the opportunity to use technology to remain connected are important.
Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study
The importance of effective communication between health care professionals and the relatives of a patient is known. Knowledge gained from research has influenced the practice of health care professionals and has also been incorporated into the training curriculum of future physicians and nurses. Effective communication between hospital staff and relatives is particularly important in the case of dying patients. A qualitative study published in BMC Palliative Care in August 2015 aimed to understand the factors and processes which affect the quality of care, in particular regarding communication between hospital staff and relatives. Caswell and colleagues focused on older people who are dying in an acute hospital setting with an emphasis on the family carers’ perspective.
The researchers showed that carers’ experience of the end-of-life care of their relative was enhanced when mutual understanding was achieved with healthcare professionals. However, some carers reported communication to be ineffective. They felt unsure about what was happening with their relative and were distressed by the care their relatives received.
Palliative care professionals’ willingness to perform euthanasia or physician assisted suicide
Euthanasia and physician assisted suicide is a topic that provokes strong reactions and has sparked many debates in recent years. In particular the case of a murderer who has asked to be euthanized in Belgium at the beginning of the year has received wide-spread attention. From a legal standpoint, the global situation varies. Some countries have legalized euthanasia, others allow assisted suicide, but in the majority of countries no legislation is in place yet. As we discuss the ethics and politics of such a debate, it is sometimes forgotten how those who would deliver such a treatment feel, the palliative care professionals.
In a recent study published in BMC Palliative Care, Zenz and colleagues investigated the willingness of physicians and nurses to take part in euthanasia or assisted suicide. The authors analyzed more than 450 questionnaire responses from palliative care professionals in Germany where euthanasia is illegal but assisted suicide is allowed. The researchers concluded that among the professionals who would eventually perform euthanasia and assisted suicide, the respondents were more willing to perform the latter. Reluctance was much greater with respect to non-terminally ill patients. Interestingly, the authors report that the general acceptance of euthanasia and assisted suicide among palliative care professionals is high; however the actual willingness to perform life-ending measures is low.