End of life care is something vitally important to all of us, but for those with a chronic disease the need may come unexpectedly suddenly or lifespan may be shortened by a gradual decline. There may be an increased need for specialised support or other adjustments to lifestyle that can impact everyone and making arrangements/having discussions early so that everyone involved is prepared can dramatically reduce the stress involved for both patient and carer(s).
The Hippocratic Post have written a useful article on when we need to think about planning, and how to plan. It is an article aimed at everyone rather than just those with chronic illness but most of the points it makes are very relevant to people with chronic illness.
When to think about starting discussions with your loved ones & carers is roughly defined with the 'surprise' question which is:
- Would you be surprised if this person died within the next 6-12 months?
Everyone involved may have particular wishes, fears, concerns and discussing these is vitally important to ensure that everyone is aware of these with plans in place. This discussion should be the beginning of the process and several more discussions may be needed.
The outcome of these discussions should be clearly communicated with health professionals and their involvement sought as early as possible and the wishes of patients & carers sets the tone for a partnership that attempts to ensure that this is a 'good death' for everyone, with everyones wishes brought in for account.
Perhaps most importantly the wishes of the person approaching end of life are paramount and are the fundamental right of the person involved. Open and clear communication between patients and clinical staff are vital to bes tdeliver the wishes of the patient.
For more information go to the Dying Matters website