Providing palliative care to those with neurological conditions is a growing, but challenging, field. Neurodegenerative diseases are numerous and variable in terms of prevalence, evolution, prognosis and trajectories, but share… Click to show full abstract
Providing palliative care to those with neurological conditions is a growing, but challenging, field. Neurodegenerative diseases are numerous and variable in terms of prevalence, evolution, prognosis and trajectories, but share features of incurability and a high load of suffering for both patients and families. In this issue of Palliative Medicine, we have examples of research that increase knowledge in the field and enhance information for service providers. Ugalde et al.1 undertook a pilot qualitative study assessing a specific intervention designed for informal caregivers of people affected by motor neurone disease (MND). Past studies designed to assess the impact of palliative care in neurological conditions have shown in general positive results on patient outcomes, but the impact on informal caregivers remains less certain. Previous research has indicated that early referral for people with certain neurodegenerative diseases can reduce carer burden,2 but this effect has not been consistently demonstrated across other studies, such as the PeNSAMI and NE-PAL studies, even when the patients’ quality of life and symptom burden are improved.3,4 The novel contribution of Ugalde’s study is that this was an intervention specifically designed for caregivers, through therapeutic groups, whereas in previous studies interventions were aimed at both patients and caregivers. The positive effect was detected by an acceptability questionnaire, and positive feedback was reported by participants, although burden, measured with a validated tool, did not show difference after the intervention. This may show that measuring just the burden caused by caregiving does not provide full information about the impact of support intervention on caregivers. A qualitative approach can perhaps help in better understanding other domains that can be enhanced to improve caregiver quality of life. In our NE-PAL trial, we felt there was a discrepancy between the lack of reduction in caregiver burden, showed quantitatively, and the positive informal feedback reported by the family caregiver to the team after receiving the intervention, confirmed by the fact that none of them wanted to end involvement with the service after the end of the study. The study from Regan et al.5 is a qualitative assessment of the views on assisted death of people in very early stages of Huntington’s disease (HD) or who had just received a positive genetic test for the disease. This research involves people who have witnessed close relatives dying with HD, or are directly involved in the care of a relative in advanced stage of the disease. This study underlines one important challenge that palliative care is going to face in the near future. The fear of death and dying is not strongly related to the fear of physical symptoms or feeling abandoned by the care system but the main requests for an assisted death regulation are based on the loss of autonomy, the need to maintain control, and the uncertainty about the disease progression and life span. Palliative care by definition looks at death and dying as a natural process and does not intend to postpone or hasten death.6 So the findings of this study are challenging for our services: what can we do to help? There is room for intervention, for example, the lack of discussion about end-of-life issues could be helped by palliative care, but for other losses and fears we have less to offer. This should encourage palliative care teams to proactively research these themes and try to be more involved in caring for those with rare neurological conditions like HD. Recently, it has been shown that even in the United Kingdom where palliative care and neurology are establishing connections and modelling new networks of care, a study aimed at mapping the integration between specialist palliative care and neurological services showed heterogeneity in service provision and integration, which varied not only between sites but also between diseases, being better for MND, but less integrated for other neurological conditions.7 As the European Academy of Neurology / European Association for Palliative Care (EAN/EAPC) consensus on palliative care in neurology recommends,8 there is need for mutual education between neurologists and palliative care professionals in order to better understand the fields of improvement of the care practice, but also to develop interventions in those dark areas representing unmet needs, fears and worries that are reported by patients and relatives and that are neglected or not recognised by the system of care. A third paper on neurological conditions in this issue of Palliative Medicine is Oliver et al.’s9 research on palliative care triggers in patients affected by progressive neurodegenerative conditions (PNC). This paper provides a helpful answer to one of the issues raised in Regan’s paper: the uncertainty of the end-of-life trajectory in conditions like HD. This lack of confidence in 760767 PMJ0010.1177/0269216318760767Palliative MedicineEditorial editorial2018
               
Click one of the above tabs to view related content.