When various aspects of palliative care are examined, the quality of palliative care for people who die at home is rated more highly by their relatives than is the case for people who die elsewhere. In particular when the patient dies in hospital or in a residential setting for care for the elderly, the quality of care is perceived as less good by the relatives. Care associated with death in a hospice and in other institutions such as those for the intellectually disabled or mental healthcare services is rated almost as highly as the care for people who die at home.
Perceptions of quality of care at the end of life are affected not only by the place of death, but also by background characteristics and disease characteristics. Our research confirms this: the model containing not only characteristics of the backgrounds and the diseases but also the place of death is better able to explain the differences in the quality of care as experienced than the model containing only the background and disease characteristics. In addition, disease characteristics such as the type of disease can affect the place where someone dies. For instance, people with dementia [13,14,15] and those who have had a stroke [14] mostly die in a nursing home or care home, and people with cancer die most often (in the Netherlands) in their homes [16]. When people are admitted to hospital shortly before death, this is often because of an acute situation with symptoms such as shortness of breath or digestive or cardiovascular problems [17]. The analyses therefore take account of both the burden of symptoms and the patient’s disease; even after these corrections, the differences in the perceived quality of care between the various care settings remains statistically significant. Nevertheless, the ability of the models to explain the differences is no more than 12%, even with the background and disease characteristics added to the place of death. That means that there are other factors that affect the perceived quality that cannot be accounted for by our data.
The finding that the care provided to people who die at home is rated most positively supports the current Dutch policy of letting people live at home as long as possible [18]. In addition, it is in line with the wishes of many people, who would prefer to die at home [2]. Nevertheless, it is not always either possible or desirable for a patient to die at home. Research by Korte-Verhoef et al. [19] has for instance shown that a large proportion of hospital admissions are avoidable, but at the same time that there can still be situations in which the symptoms are so complex that admission is inevitable. It is therefore important that sufficient attention is paid to good palliative care in settings other than home, and in particular those that are not specialised in palliative care, such as hospitals and residential care for the elderly. A consultation team or specialist palliative team can provide support for this [20, 21]. Our results also demonstrate that this specialist palliative care can offer added value. Experiences with the care in a palliative unit in a nursing home or care home are more positive than those in the regular departments of a nursing home or care home. This applies in particular to the aspects involving care for the relatives. Specialist palliative care is also provided at hospices. The care associated with the patient’s death is also rated relatively highly by the relatives of patients who die in this setting.
The principal reasons for people being admitted to a hospice in the Netherlands are when there is a preference for dying in a hospice and when intensive care and support are needed [22]. This specialised set of knowledge and skills results in good care for both the patient and their loved ones. In addition to the institutions already described, there are also institutions where palliative care is given to specific target groups. In our analysis, the ‘other institutions’ group largely comprises institutions for the intellectually disabled and for mental healthcare. The perceptions of relatives of people who die in these settings are no less positively rated (with the exception of a single aspect) than when people die at home. Because people often live in such institutions for a large proportion of their lives, these institutions can also be seen as a home setting to a certain extent. It is however only a small group within our analyses. To obtain a better picture of the experiences with palliative care in these institutions, further research into these specific target groups is needed.
Our research also looked at the differences in specific aspects of palliative care. In all the care institutions included in this study, the aspect of ‘respect/care for autonomy’ was experienced as being less good than the home setting. This aspect looks at the extent to which the loved ones are involved in decisions made by the caregivers about the care, whether they could determine what their own role was within that care, and whether allowances were made for the individual wishes of the relatives with respect to the care for the patient. One possible explanation for this is that the partners of people who die at home often live in the same house and are therefore closely involved in the care and also tend to take on the role of informal caregiver. Previous research has also shown that it is important for the relatives of people who die at home to be included as part of a good professional care team, and that they have the opportunity to tackle the symptoms and administer pain relief [23]. In addition, the fact that the general practitioner is heavily involved may play a role, as general practitioners in the Netherlands will often have known the patient and their family for many years.
Methodological considerations
This study is based on a unique dataset that has been gathered within various care settings, in which the loved ones of patients with a wide variety of diseases have been included. One possible limitation of the dataset is whether it is representative of the Dutch population of patients who received palliative care. This was difficult to establish as there is no central register of such patients and the participating healthcare providers were all involved in the Palliative Care Improvement Programme, which may not be a random or representative selection. However, as many of our results are in line with previous research and/or common expectations, it is unlikely that potential issues with representativeness have greatly affected our results. An issue that may be more pressing with regard to the generalisability of results is whether our findings may also apply to palliative care in other countries. This is an issue in particular for the more extensive analysis that we were able to undertake, which cannot be compared to existing literature. Replication of this analysis in other countries would be welcomed as it is not possible to rule out that the way palliative care is organised in the Netherlands may have an effect.
With regard to the CQ-index questionnaire, it is important to mention that this is a validated questionnaire that looks not only at the general ratings for care but also at various aspects of palliative care. This involves asking the relatives concrete questions focusing on experiences (observations), rather than satisfaction (evaluations). The perceptions are partly about the care and support provided to the relatives themselves and partly about the care provided for the patient. There are no direct questions about the perspectives of the patients themselves, which is inherent in the fact that people cannot be asked questions about the care associated with their own deaths. Using the relatives as a proxy for the patients has been shown in earlier research to be a reliable way of reporting on the quality of care at the end of life [24].