by Dr Gill Turner and Dr Lizzie Vardon

Advanced care planning (ACP) is a broad term used by healthcare professionals, to try and understand and record a plan for how people would like to be cared for in the future.

Benjamin Franklin wrote to Jean-Baptiste Leroy in 1789 “In this world nothing can be said to be certain, except death and taxes.”  Unfortunately, we cannot do much about the taxes, but we can help ensure that each and every one of us has had the opportunity to consider how we would like to be cared for if our physical or mental health deteriorates. 

Unfortunately, whenever anyone talks about ‘planning for the future’ in the context of health care, there is a risk that one of several things happen. Sometimes the patient and their family starts to feel anxious as in ‘ I must be really bad if they are talking about dying’, sometimes everyone thinks  immediately that a difficult decision is being sought – usually about resuscitation and life support . Although, on some occasions, people feel really pleased that they are being asked for their view and opinions about their care in the future, their opinions can often come as a surprise to their families who had never previously had such conversations.

A common misconception is that ACP is focused solely on serious medical decisions such as Resuscitation.  In fact, ACP is about holistic and person centered wellbeing.  We should not be defined by the medical condition that we have been diagnosed with, but instead be treated as an individual with our own unique experiences, thoughts and aspirations. In this context,   we should consider planning for all aspects of our future to be prudent. There may come a time for any of us in future when, due to loss of mental capacity, we’re are not able to make some decisions for ourselves, so determining in advance those things that we feel important or feel strongly about and ensuring our families, doctors and those close to us know about it, will give us a voice in a worst case scenario. It might be useful to think of it along the same lines that we make wills regarding our finances and assets for when we have died, and yet, we don’t always think about a living or health will.  Nonetheless, some people may not want to plan for the future or find thinking about such things distressing; which is also ok none of this is compulsory

Some questions that can be useful to think about, and maybe write down your thoughts are:

What is important to you, and what makes you happy?  

It may be relationships, friends and family members.  It may be pets, or a hobby.  It may be that you would always want to have your hair and nails done how you like them, or to be clean shaven. It might be that if you were very unwell, and were in the last days of your life that you would want to be surrounded by familiar photographs, and have your favourite music playing.

What elements/aspects of care are important to you?

It may be that, where possible you would want a bath rather than a “strip wash”.  It may be, with regards to Parkinsons, that you would want to be “on” as much as possible at the cost of more dyskinesia at the time.  It may be important that you would want to have dignified care and management of your bowels and waterworks which could include a catheter.  It may be that   being  fed via a feeding tube would never be acceptable .  It might be that you wouldn’t want unnecessary tests and investigations that won’t make you feel any better.  It might be that you would want antibiotics for a chest infection, but that you wouldn’t want repeated intravenous courses which meant lots of needles.  It might be that if your body weakened such that cardio-pulmonary resuscitation, in the event of the heart stopping, did not bring you back to a meaningful quality of life, that you would want to be allowed to die  peacefully. 

Is there anything that you worry about, or fear happening in the future?

It might be how you would be able to communicate if you found it difficult to speak. It might be how you’d wash and dress ourselves.  It may be that you would prefer to die/pass away at home, or, in hospital.  It may be that you worry about who will look after the cat after you have gone.

If you feel that you would like to think about an Advanced Care Plan, you might find it helpful to talk through your thoughts with a loved one, family member, friends and carers.  If you feel that you would like to make a record of your wishes, or discuss your thoughts further, then please get in touch with the PD specialist nurse, or speak to one of the PD team at your next clinic appointment.  Alternatively, you could contact the care navigator at your local GP surgery.  Here are some links below that you might find of interest:

Coates Center – in the grounds of Oakhaven Hospice.  Open to individuals and families/carers of those affected by a long term condition.

The existence of a link does not imply endorsement by Parkinson'sUK or the New Forest Branch

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