Choosing end of life care and palliative care

One of the most hardened stereotypes about the elderly, especially about the elderly with intellectual disabilities, is that with the age they become in a state of total dependence on the care of their family and loved ones. However, what we observe in the age group 60+ completely opposes this stereotype. Modern elderly people are truly active – they continue to work even after reaching the retirement age, participate in various interest clubs and amateur formations, participate in volunteer activities, and in many cases, they support the families of their children, for example by providing full-time care for their grandchildren.

However, the fact that aging is a really challenging period for every person is indisputable – on the one hand, it confronts us with degenerative changes in our body and intelligence, on the other hand, it is a borderline period that requires us to rethink our goals and plans and even to start building brand new ones. And sometimes the changes and the decisions we have to make in light of all this can be really scary or demotivating. They can cause the elderly person to fall into a position of total self-isolation or to start leading an extremely passive lifestyle. This is especially true for aging adults with intellectual disabilities, who need additional and systematic support to maintain their independence in the aging period. That is why, in our understanding, the targeted support to AAWID for achieving increased level of independence is one of the key factors for improving their quality of life. They should be provided with options and the right to take informed decisions for their life and way of living, as well as to receive respect for their decisions, personal preferences and opinions.

In this unit, we will refer to such difficult and frightening for every person choices, namely the ones that a person makes at the end of his life. For every person, it might be for sure difficult and painfully to talk about the last stage of his life but this should not prevent him of his right not only to live but to end his life with dignity and in a way that reflects his individual views and preferences. Unfortunately, our voices are not always being heard especially at the time when we reach the end of our lives, moreover if we are aging people with intellectual disabilities. It is not a secret that very often the relatives of AAWIDs restrict their independent decision-making, assuming that their AAWID relatives are no longer able to decide upon themselves, especially when this concerns their end-life period when their independence is significantly reduced by advanced and proceeding diseases that require constant care.

Having this in mind, we developed a set of exercises by which we aim to create awareness about the scope of end life and palliative care as well as for its impact in improving the Quality of Life of AAWID. We believe that AAWIDs should be provided with sufficient information so that they could be able to make decisions on this very important topic – end-life care when the time comes.

By performing this set of exercises an AAWID would become more confident in choosing the most suitable end-life and palliative care for him, considering his own individuality, personal preferences, resources (human, financial and social), and believes. Thus he would be empowered to fulfil his individual choices and preferences, instead of obeying the decisions of his relatives.

NOTE:

• Depending on the person and his level of understanding, you might have to alter the exercise and the tasks;
• Each instruction provided in this exercise should only be considered as a suggestion - the educator should decide how to explain the exercise and its objectives to AAWID so that it becomes as clear as possible to the person.
• Depending on the person’s current framework/background of knowledge he may need more time to understand the concepts and do the tasks. In such a case you may split the exercise into more sessions, conducted at different times or days.
• The provided links to the videos can be used for direct watching together with the AAWID or replaced with other videos on the same topic which the educator considers more appropriate.