Having a good death is an essential component of the Principles of End of Life Care (EoLC). Over 460,000 people in the UK who are resident in care homes, are living with dementia and being able to provide them with the best possible care and support is highly important. This includes ensuring a ‘good death’.
Dementia, as a progressively degenerative disease, means that many people and their families/carers will have to face the fact that death is inevitable. Combined with this are the difficulties faced by those who have to establish and agree what constitutes a ‘good death’, as there are so many uncertainties and points of view to consider. This is due to the fact that as time moves on, the number of people who become involved in the care and decision making process can increase as the person living with dementia loses their capability to make informed choices. This can be a source of anxiety, distress and frustration for carers, family, medical professionals and also the person themselves.
With the removal of the Liverpool Care Pathway, there is a need for additional help to make sense of the challenges, difficulties and uncertainties faced by those involved in the decision making process to ensure the right decisions are made in the best interests of the person. When considering certain conditions, uncertainty can raise questions like; What is the right treatment? Who should do what and when? In what setting/environment should EoLC be delivered?
Whilst an Advance Directive can help, it can also lead to confusion as to who undertakes what role when a person enters the dying process.
Care workers can feel uncertain as to how they should offer support if the EoLC process is unclear or people have conflicting views as to what is in the person’s best interests. Therefore, when dealing with EoLC and dementia, everyone involved should take advantage of as many opportunities as possible to have conversations (such as with care home staff, medical teams, the NHS and families/carers) that will help work through all available options as this should help to support a positive outcome - a good death for the person.