Jane Bernal

Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: Findings from an ethnographic study

PURPOSE Growing numbers of people with intellectual disabilities are diagnosed with a life-limiting illness such as cancer. Little is known about disclosure of diagnosis and prognosis to this group. The study aim was to explore how much people with intellectual disabilities who have cancer understand about their diagnosis and prognosis, and to explore how much they are told about their cancer. METHOD 13 people with intellectual disabilities and cancer took part in a 3-year ethnographic study. Data collection consisted mostly of participant observation. Participants were visited regularly for a median of 7 months. RESULTS Eleven participants were told that they had cancer, but most were not helped to understand the implications of this diagnosis or their prognosis. Decisions around disclosure, as well as the task of truth-telling, rested mostly with relatives and paid carers. Those with severe/profound intellectual disabilities were most likely to be protected from the truth. Understanding was affected by cognitive ability, life experience and truth-telling. Lack of understanding affected the ability to take decisions about treatment and care. CONCLUSIONS Existing models for breaking bad news are inadequate for people with intellectual disabilities. The findings suggest that more open communication is needed, but further studies are needed to establish best practice in this area.

Death, Dying and Intellectual Disability Research

In the 10 years since it was claimed that death and dying were perhaps too emotive and certainly too incongruous for intellectual disability researchers (Todd 2002), there has been a small but growing international interest in this field of study. This changing attitude towards death and dying within intellectual disability has been marked by two key events. Firstly, a changed view on what counts as a ‘significant death’. Secondly, there has been an acceptance that the deaths and periods of dying people with intellectual disability present important personal, academic and professional challenges. Early work in this sensitive field tended to be concerned with bereavement and, in particular, the impact the death of a loved one, usually a family member, had upon the life and well-being of people with intellectual disability. At this time, death itself was not so much the focus for scholarly activity. Rather, it was a device used to cement the notion that people with intellectual disability had emotional selves, capable of reflection and feeling. Within this bereavement literature, seldom was it entertained that the death of people with intellectual disability might have potent meaning for someone who in turn loved them. That death comes to people with intellectual disability as well as to the rest of us seemed to be simply overlooked, as was any recognition that a relationship with a person with intellectual disability could be positive and grieved for. The idea that people with intellectual disability might leave a social legacy was not entertained. This absence of thought that people with intellectual disability might just leave a gap in society when they die, no doubt, related to the general devaluing of people with intellectual disability, including their relationships with others. Now, people with intellectual disability form a part of the huddle of humanity, which Berger (1963) described as one bound together in the face of death. Perhaps the final step in the move towards full inclusion is the admission of the relevance of death. The study of death and intellectual disability, as for other populations, encourages and reiterates a sense of belonging and community, a sense that death itself threatens. A turn in bereavement research has led from building evidence that people with intellectual disability are affected by death, to considering how to support people through their bereavement experiences, and examples of this are provided in this special issue. The impact the death of a person with intellectual disability has on others remains an important but less addressed concern for research. Perhaps another reason for the lack of interest in death and dying within intellectual disability research was that for almost a century, the lives and deaths of people with intellectual disability were sequestered, hidden behind the walls of the institution. Indeed, institutionalization could be characterized as a form of death, ‘social death’ (Sudnow 1967). Blatt & Kaplan (1966), for example, described institutionalized patients as being neither dead nor alive but in purgatory. Living people with intellectual disability were treated as if they were as good as dead. Hidden and removed from society, their social death preceded their biological one, sometimes by many decades. It is interesting to note that the wider and more general interest in the social dimensions of death occurred at the same time as the de-institutionalization of people with intellectual disability. This was a period of change to the template of social control that was applied to all excluded groups, for example people with intellectual disability, the dead and the dying (Baudrillard 1976). The deaths of people with intellectual disability became more public and hence less easily overlooked. The rise of

Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability:

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.