Expecting the Unexpected. When death is expected, people can plan for it, think about what care they want when dying, where they might die, make a 'bucket-list', use Palliative Care services. But death isn't always like that, especially not for people with learning disabilities.

Only a third of the people who had died in our study died after a long illness where death was expected. Some died suddenly, some after an illness of a few days or weeks, some after a longer illness where death was still not anticipated, at least not by care/support staff.

Expecting the Unexpected, https://onlinelibrary.wiley.com/share/author/Y53GSHWCKRVJ3ZB4GPQP?target=10.1111/jar.12827 published today is part of a study with @LastDaysoflifeR of the deaths of people with intellectual disabilities (learning disabilities in UK) who lived, at the time of their death, in supported living or care home services.

We approached organisations that provided supported living/care exclusively for adults with intellectual disabilities. We asked them how many living people their organisation supported & about all deaths over an 18 month period. Then we asked staff more about each death.

We used a questionnaire (VOICES-SF) that has been widely used with the whole population to explore end of life issues.
The organisations supported a living population of just over 12,000. The observed death rate was 12.2 per 1,000 supported per year.

We found that compared to studies of the whole population smaller proportion of the deaths in our study followed a long illness, or were expected by staff. We wanted to understand this better. We decided to divide the deaths into 4 groups.

Anticipated deaths. Sudden deaths or when the person was ill for less than 24 hrs. Deaths after ashirt illness (1day-1month). Deaths after a longer illness that were not anticipated. 98% of deaths fell into these groups.

We found these different patterns of dying (dying trajectories) went with different causes of death & had different patterns of service use.

Anticipated dying often from cancer or dementia, & people more often able to die at home. Sudden deaths were often from heart disease, died at home or in most acute part of hospital. Respiratory illness seen in all groups but most common in short illness group.

Deaths after longer illness seemed to be better anticipated when person was dying with cancer or dementia than when death was from another cause.

Understanding these dying trajectories should help services people throughout their lives. Where death was preventable or might have been amenable to better treatment, it should go without saying that the better treatment must be available.

Health professionals & care staff may learn to recognise better when someone is dying, & to talk about it. But these dying trajectories mean that as well as working to prevent premature death, services must be ready to support people dying along these less expected trajectories.