Should hospices offer respite admissions to patients with motor neurone disease?

Abstract

The provision of inpatient respite care for patients with motor neurone disease (MND) in hospices is variable. Some institutions are concerned about accepting patients who may need long-term care. Some see 'respite' care as simply a short residential stay with little nursing or medical input being necessary. Others, however, feel that respite offers the potential for palliative care and should be provided within the spectrum of a hospice service. This retrospective study examines that group of MND patients requesting respite care in terms of demographic details, problems identified and medical and nursing interventions made during respite admissions. The results indicate a great need for symptom management in these patients as well as co-ordination of future community care. Most patients were discharged home after respite admissions and the median stay in the hospice (15 days) was identical to that of cancer patients. We conclude that respite admissions to the hospice were valuable both for MND patients and their carers. Units not currently involved in this work may wish to reconsider their position.

Palliative therapy in the terminal stage of neurological disease

“…There are few studies on the prevalence of symptoms in the endstage of different neurological diseases except for ALS (see Table 1; [46,76]). The first data for conditions such as MS and dementia are still incomplete [60,88].…”

“…All questions must be answered honestly, but not all information must be given at one time. Most patients who have undergone long S3 Table 1 Prevalence of symptoms in the endstage of amyotrophic lateral sclerosis (ALS) [46,76], multiple sclerosis (MS) [88], dementia [ diagnostic odysseys from one hospital to another are, at least partially relieved by having a label for their condition at last [36,51]. Humor is a sign of living and should therefore not be forgotten, even in a serious condition [53].…”

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

“…2001, Horne & Payne 2004); chronic obstructive pulmonary disease (Gore et al. 2000); motor neurone disease (Hicks & Corcoran 1993, Kristjanson et al. 2003) and multiple sclerosis (Wollin et al.…”

Palliative care in motor neurone disease: where are we now?

“…8 There are still barriers to this involvement as there may be fears that the palliative care team may have insufficient experience in MND care, the load on nursing care may be seen as excessive with insufficient resources to meet the need, or beds may become ‘blocked’ within specialist palliative care units. 10,22 Moreover, many patients, families and professionals associate palliative care with the end of life and the services may be viewed negatively, as they are associated with impending death. 10,23 There is challenge in explaining the earlier role of palliative care to all concerned.…”