Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study

Palliative care, as defined by the World Health Organization, not only aims to maintain patients’ quality of life, but also to include the support of family caregivers [1].

Most people at the end of life wish to be cared for at home [2]. Family caregivers play an important role in the realisation of an effective home care. Nevertheless, family caregivers are confronted with various challenges, not only meeting the care needs of their relative, but also dealing with the demands on their own health, on the family and perhaps also their job situation [3]. Family caregivers support patients by giving them practical help, providing personal care, supporting them psychologically, and often taking care of medication administration [4, 5]. These caring tasks in addition to having a relative at the end of life, influence caregivers physically, emotionally, and socially. Emotionally, they have to deal with, for example, fear or loss [6]. Due to care giving, they frequently lack sleep and feel tired and exhausted [7], and may suffer from anxiety and depression [8]. Family caregivers, especially in midlife, report lower health-related quality of life than the average population [9]. Trustful and reliable relationships within their familiar and social systems are important resources for patients in palliative situations [10]. If these sources of support are exhausted palliative care at home is only possible to a limited extent.

As the WHO definition of palliative care already suggests, patient quality of life and burden of family caregivers should be considered together. Large studies and reviews are available looking at the relationship between patient QoL and caregiver burden at one time-point (i.e. a study with cancer patients [11] and a review on patients with motor neurone disease [12]), but also between unmet needs of patients and caregiver stress burden [13]. The longitudinal relationship between QoL and caregiver burden over time was described by Murray et al. on the basis of observational qualitative data [14]. To our knowledge, there are no studies trying quantitatively to show the dependence of caregiver burden on changes in patient’s quality of life in a larger sample over time.

To close this gap, this study therefore quantitatively analyses the correlation between quality of life in palliative care patients and the burden perceived by their family caregivers over a 6-month time period. The study was part of a larger project which primarily evaluated palliative CME courses for general practitioners (GPs) [15].

In this prospective observational cohort study, palliative patients cared for at home at the end of life and their family caregivers were asked to fill in short questionnaires at monthly intervals for a period of six months or until death of the patient (if the patients died within the 6-month observation period). Patients judged their quality of life on the Quality of Life Questionnaire Core 15 Palliative (QLQ-C15-PAL) [16] of the European Organization for Research and Treatment of Cancer (EORTC). Family caregivers reported their perceived burden on the short form of the Burden Scale for Family Caregivers (BSFC) [17]. The study was conducted in compliance with the Helsinki Declaration. The study protocol was approved by the ethics committee of the Medical Faculty Heidelberg (S-043/2007). The present study is a secondary analysis of a trial that was registered (ISRCTN78021852, assigned on 04/04/2007) and its study protocol was published [15].

In a sample of palliative patients cared for at home at the end of life, the two factors of decreasing emotional functioning and increasing dyspnoea had the highest impact on increasing burden on family caregivers. For example, if patients feel increasingly tense and depressed towards the end of life, a measurable association with the burden of family caregivers was shown. Additionally, patient reported increasing dyspnoea was shown to be independently associated with increasing caregiver burden.

Other studies have reported a relation between patient and caregiver emotional status, not only for patients with cancer. Patient and caregiver anxiety and depression develop in concordance [8] and were found to be higher in family caregivers than in a non-caregiving population [21]. Patients with depression highly impact on the caregiver burden [22], while burden is also discussed to influence caregivers’ depression [23]. Our findings provide further evidence related to this issue.

Although patients in our study suffered from fatigue and pain as the most highly reported symptoms, these complaints did not influence the wellbeing of the relatives. Therefore, it remains unclear, why many people express concern about the management of pain for patients at the end of life. In addition, even though insomnia - a very disturbing symptom for somebody caring for a patient at the end of life - shows influence on the caregivers’ wellbeing, it was not responsible for the development of a higher burden score in family caregivers in our study. Often caregivers state that they worry about loss of appetite of the patients, as well as about growing nausea and vomiting and the need for prompt and sufficient help. In addition, they link appetite with the wellbeing of the patient. However, our results indicated that patient loss of appetite had no influence at all on the development of caregivers’ sense of burden. Increasing dyspnoea seemed to have a higher impact on perceived caregiver burden, although another cross-sectional study found no relationship between breathlessness and caregiver burden [24]. Since that study [24] included patients with lung cancer and heart failure, caregivers might have been more prepared for occurring breathlessness than the caregivers in our study including patients with various cancer diseases. For caregivers, breathlessness is associated with suffocation and impending death [25].

Grunfeld et al. [23] describe the relation between increasing caregiver burden and decreasing patient functional status. They evaluated first and last assessments during the palliative period with a wide time span interval between assessments. In our study, we consciously decided to analyse 3 assessments at monthly intervals within a 6-month observation period, thereby evaluating correlations over a shorter time span, which we considered appropriate in terms of the palliative care context.

Unexpectedly, there was no association between the decrease in overall patient quality of life and the increase in caregiver burden in our study. Another longitudinal study also reported not finding a relation between patients’ quality of life and caregiver well-being, which was rather influenced by caregiver functioning [26]. We did not assess caregiver functioning, so this relationship remains unclear in our study. The low association between increase in caregiver burden and the development of other patient variables, i.e. physical functioning and pain, might be due to coping strategies of family caregivers, so that they subjectively do not perceive themselves as burdened.

Based on these results, it can be recommended that general practice teams involved in the home care of palliative patients assess caregiver burden at regular intervals. This could improve support of caregivers of patients where a change in emotional function and dyspnoea is identified, since they are associated with each other. Symptom management through early interventions as well as providing information and support for both caregivers and patients is recommended. To effectively reduce caregiver burden, means not only interventions solely for caregivers, but also that interventions within the dyad are needed, managing patient symptoms as well. Early identification of patients moving into end-of-life status is of paramount importance to prevent strain on family carers and to enable support by health care professionals in this palliative constellation [27]. A regular assessment of both patient symptoms, especially dyspnoea and emotional functioning, and caregiver burden is our recommended approach to appropriately support family caregivers and to ensure good quality end-of-life care for cancer patients [10].

Our results confirm the professional requirement for general practitioners to regularly assess both patients’ needs and burden of caregivers to enable early interventions. In palliative situations, enabling patients to be cared for at home at the end of life means concerns, needs and burden of family caregivers also have to be considered as they are inter-related to each other. Caregiver burden may be eased if patients’ symptoms, especially dyspnoea, and feelings of depression and anxiety are addressed.