J Palliat Care
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Multicenter Study Comparative Study
Decision-making for gastrostomy and ventilatory support for people with motor neurone disease: variations across UK hospices.
Interventions, such as the use of percutaneous endoscopic gastrostomy (PEG) and non-invasive ventilation (NIV), are used in the management of people with motor neurone disease with the aim of improving quality of life and relieving symptoms. However, the number of people receiving these interventions varies across the UK. This study has looked at the involvement and knowledge of consultants, within specialist palliative care services, with these procedures, to ascertain if there were differences in attitudes to their use. ⋯ There appeared to be great variation in their involvement in and knowledge of the use of these interventions. The majority of services were involved in the care of people with MND, but often only in the terminal stages. There appears to be a need for the wider application of guidelines on the use of PEG and NIV, as well as the development of a collaborative approach with other services, including neurology and rehabilitation services.
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Understanding the factors that precipitate caregiving crises that cannot be resolved at home is central to improving options for care at life's end. The purpose of this study was to explore caregivers' perceptions of the crises that preceded and were resolved by relocation during end-of-life care. ⋯ Relocation presents an opportunity for families to relinquish the burden of end-stage care so that they can resume and complete a lifelong relationship. Careful recognition of and attention to the intimate dynamics that accompany suffering and dying are essential elements of palliative care, which aims to uphold the dignity of the dying person and the integrity of the family in both caregiving and bereavement.