The topics of death and dying can be sensitive issues. This can be especially true when talking to people with learning disabilities, largely due to the health problems experienced by many, as well as the varying attitudes towards talking about the subject.
People with learning disabilities are now living longer than ever before, with a large number living into old age, but the early mortality rate is still considerably higher than for the general population.
People’s attitude towards death may be shaped by their life experience, their religion, and by whether it has been treated as a topic to be discussed or to be avoided. As such, death is something to be prepared for both practically and emotionally.
The impending or eventual death of a person with learning disabilities is something from which they should not be ‘shielded’. One of the most important things which can be done to aid the understanding and acceptance of death is to treat it as a normal aspect of life, to include the person in discussions about what it means, and to aid them in comprehending and exploring it in their own manner.
Acceptance of one’s own mortality is a complicated, personal journey, so the individual should be offered as much information and support as they can use. Find out more about the bereavement process, with attention given to the value of speaking about death, and the different ways in which people grieve.
The manner in which death is to be approached is difficult to generalise. Some people treat it as a sad, frightening occurrence, and prefer not to discuss it more than is necessary. Some approach it in a spiritual or religious manner, taking comfort and clarity. Some see it as an unavoidable occurrence to be taken in a stoic manner.
Clearly the decision as to how much the subject is up for discussion is ultimately up to the individual. Family members and carers may well have a view on whether (and the extent to which) to discuss an impending death. It should be noted, however, that the instinct to ‘protect’ a loved one from the thought of death can be damaging, with the reality seeming all the more overwhelming and sudden when it can no longer be hidden.
This is true both for the death of a loved one, and for the impending death of the person themselves. The aim is to support the individual in preparing themselves for the reality of dying and death, meaning that the level of ‘preparedness’ can only be gauged by the person themselves.
When a person knows that they will be dying in the near future, they may choose to enter into what is known as palliative care. The goal of palliative care is to make the end-of-life experience as comfortable and supportive as possible.
It differs from hospital care in that the aim is no longer to ‘cure’ the individual, but instead to alleviate their symptoms and pain as much as possible, whilst also providing emotional support. This is known as a ‘holistic’ approach. Whilst palliative care can be administered at home or in a hospital, it is most commonly provided in a specialised ‘hospice’. The person may become a fulltime resident in a hospice, or visit from home as a ‘day-patient’.
Patients can be referred to free palliative care through their GP, hospital doctor or district nurse.