Planning ahead for the future is important for everyone to think about, but particularly so if you have a long-term health problem like Parkinson’s. Parkinson’s is a progressive condition which means it gets worse as time goes on. There may come a time in the future where you are no longer able to tell other people what you want to happen.
We use the term “Advance Care Planning” to describe the process of thinking about the future and making sure that your views about potential treatments or care options are known. Advance Care Planning happens in all sorts of long-term and progressive health conditions, not just Parkinson’s. There are lots of ways that you can make plans for the future.
The most important first step is to spend some time thinking and talking things over with your family and friends. Your Parkinson’s team can then work with you to make sure that your wishes around future treatments are recorded in your medical notes. However, there are also other documents that can be used to help you make sure you have outlined your wishes in advance. This is particularly important if communication becomes difficult in the later stages of your Parkinson’s, or in case you become unable to make decisions for yourself.
An Advance Care Plan should usually be shared by all healthcare professionals involved in your care, including the GP, your Parkinson’s team and any other teams involved.
Making a will is writing down what you want to happen with your possessions, property and assets after you die. Any adult over the age of 18 in the UK can make a will, but it is a good idea to do it in consultation with a solicitor to prevent any misunderstandings at a later date.
A Lasting Power of Attorney (LPA) is a legally binding document. If you complete one of these, it authorises other people of your choice to act on your behalf in the future if you lose the ability to make decisions for yourself.
There are two types of Lasting Power of Attorney:
1. Health and Welfare: This applies to decisions medical treatments and decisions surrounding organising any future care support that you might need.
2. Finance: This applies to decisions regarding the management of your finances.
An LPA is legally binding but only comes into effect if or when you are unable to make decisions for
yourself.
You can organise an LPA through a solicitor or you can apply for one online.
https://www.gov.uk/power-of-attorne
Some people have strong views about specific treatments. A Living Will (or Advance Decision to Refuse Treatment ADTR) is a document that is usually completed after discussion with a healthcare professional and outlines any future treatments or interventions that a person would not want to receive in any circumstance. It is a legally binding document that you can make at any time. You can read more about ADTRs here https://www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment
Cardiopulmonary Resuscitation or CPR is the term used to describe chest compressions and breathing support that can be provided in an emergency situation where a person’s heart has stopped beating and they have stopped breathing, until the cause can be reversed. There are many situations where CPR will not be successful or the cause cannot be reversed.
It is important to think about what you would want to happen to you that if you became so unwell that your heart or breathing stopped. Some people have strong views that they would not want anyone to start CPR in this situation.
A Do Not Attempt Cardiopulmonary Resuscitation Document (DNACPR) is a form that is completed by a healthcare professional. The Healthcare professionals caring for a person complete this form either when a person has indicated that they would not want to receive CPR, or the team caring for the patient feel that in the event of a Cardiac Arrest, CPR has a very low chance of success and/or may cause significant harm. A DNACPR is not legally binding and can be reversed at any time.
It is important that you speak to your GP or your Parkinson’s Team if you would like a Do Not Attempt Resuscitation Document to be put in place. There is a lot more helpful information about decisions around CPR on the Talk CPR Wales website http://talkcpr.wales/
Parkinson’s UK has some useful information about getting your affairs in order and preparing for the end of life in advanced Parkinson’s, which can be accessed here: Putting your affairs in order |Parkinson’s UK