BACKGROUND: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement.
METHOD: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics.
RESULTS: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement.
CONCLUSION: Death affects many people with intellectual disability. Staff require training and support in communicating death.
This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.
BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.
AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.
DESIGN: Nationwide population-based postbereavement survey.
PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.
RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.
CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.
Cette réflexion est basée sur l'expérience personnelle de l'auteur avec une équipe de soignants d'une résidence pour des personnes ayant un handicap de leurs capacités mentales. Le changement de leurs conditions de vie permet une longévité plus importante et la nécessité d'une réelle prise en charge de leur fin de vie. L'importance de la relation entre patients et soignants peut entraîner une attitude protectrice des soignants, ceux-ci tendent alors à s'opposer à un transfert en hospitalisation ou en soins palliatifs qu'ils mettent sur le même plan. Cette résistance à une aide extérieure vécue comme une intrusion peut s'opposer à des besoins non résolus des patients ; une autre difficulté est relative à la façon d'informer ces patients sur leur état de mourant. Un rapprochement entre ces services et les soins palliatifs serait donc nécessaire.
Quelle prise en charge palliative pour les personnes présentant un handicap mental ? En effet, lors de ces dernières décennies des modifications du profil de la mortalité des personnes handicapées sont survenues dues à des progrès thérapeutiques et à des meilleures conditions de vie. Parallèlement, les conditions de la prise en charge de la fin de vie des handicapés mentaux doivent être en accord avec ces améliorations.