Discriminated to death: caring for people with learning disabilities who are dying

Key points

* clan with learning difficulties tend to be treated les favourably than other citizens when it draw nears to care at the extreme point of their lives.

* Diagnosis and treatment is many times delayed unnecessarily and decisions are made in different ways and for different reasons than would be the case for the majority of patients.

* serviceable practice examples are the exception rather than the mastership and much more needs to be done to support staff and carers who are helping someone [i]or[/i] part of to the other their last illness.

It may strike one as being contradictory to include a paper about dying in ajournai called Living Well. Many of us would address not to think about our hold or anyone else's death unles we have to on the other hand this project suggests that this is an unhelpful rejoinder It leads us as individuals and as services to be unprepared, frightened and evasive.

The research upon which this paper is based refer tos that thinking ahead is important for services if family with learning disabilities are to be helped to 'live well' right up to the extremity of their lives: they ne health services which work seamlessly and assure them the same quality of treatment and care as other nation expect to receive for a relative or friend who has a terminal illness. This paper reports the preliminary tasks from a qualitative study of services that cared for a individual with learning disabilities during a terminal illness. The research throw was commissioned under the auspices of the GOLD (Growing Older with a Learning Disability) programme of the Foundation for race with Learning Disabilities to explore these discrepancies and a certain number of of the reasons that lie behind them. Detailed case studies were collated and explored from different perspectives from one side interviews and discussions with the social care staff, health professionals and a certain quantity of of the family members concerned

These case studies illuminate the way the service learned of the person's illness, by what mode they mobilised services and made decisions, and to what expanse they were able to work together to provide support in the person's last month and weeks. It also documents the way that staff, as individuals and as teams, made faculty of perception of their experience - what had they learned and valued about caring for a someone who was dying (as this was oftentimes their first experience of being shut up to a dying person), in what manner had they evaluated the professionals and services that they had been brought into contact with and what barriers had they faced as they tried to make it possible for the one they were caring for to have a 'good death'.

Tony Blair, in his introduction to Valuing race acknowledges that people with learning disabilities, as a cluster and as individuals, are too ofttimes victims of discrimination. In this investigation we saw that while individual decisions were oftentimes made with care and with angst, the default position was individual of non-intervention and that l to nation with learning disabilities being treated 'les favourably' than other citizens when it came to care at the extremity of their lives. Individuals, their relatives, medical teams and paid carers extremityed up making choices from a restricted palette of possibilities which they knew by what mode to access and had more [i]or[/i] less knowledge of, or confidence in. by the agency of contrast the values which emerg from this throw were very much biased towards proactive intervention: we explored the possibilities for making graduated choices, using ingenuity to devise ways of making treatments as of a sweet disposition and unthreatening as possible and formal mechanisms for taking principled decisions in the best interests of clan with learning disabilities. The law has changed since the case studies were compiled and the fresh Mental Capacity legislation will provide a helpful framework for making proactive decisions. on the contrary we think there is a apportionment that can be learned from the way decisions were made in relation to these individuals because the unspoken assumptions might continue to operate flat under the new legal framework.

The case studies were explored against the backdrop of a thorough literature review drawing upon studies of people with learning disabilities and ageing, their experiences of receiving the pair primary and secondary health care, the mainstream literature upon death and dying and evaluations of different forms of hospice and place of abode care. The literature collated evidence to support the issues arising in these cases, namely that nation with learning disabilities die from different illnesses; take care of to be diagnosed later; to have les curative treatment; to have their symptoms view from aboveed or are misdiagnosed throughout their illnesses. They are les likely to be told about their diagnosis smooth close to death; they die in different places with little access to hospice care; and are supported by the agency of differently constituted constellations of health and social care professions. They may, as a issue of any or all of these factors, receive les pain relief. by the agency of using the palliative care received by means of people without learning disabilities as the primary respect point we saw the expanse to which care of clan with learning disabilities fell short of what we would wait for for ourselves. Despite this true difficult backdrop it is clear that many social care services did their farthest and often managed to hold fast people at home in quite heroic circumstances.