People who have long term health problems are encouraged to think about what they would or would not want in the future. This does not just apply to people with Parkinson’s and similar conditions, but any long-term health condition. It should also be considered by those of us who are fortunate enough to suffer from little ill health.
Complex and Palliative stages of Parkinson’s disease
While Parkinson’s disease does not directly affect someone’s life expectancy, as disease changes over time you may have to take more complex combinations of medicines and live with different symptoms.
While the medicines can be very good at treating the movement problems in Parkinson’s disease, they are less effective at treating so-called non-motor symptoms that patients face. For example, some patients find they feel very dizzy on standing, that their memory or mood is less good, or that they find it more difficult to swallow food and drink safely.
The side effects of medicines can actually make some non-motor symptoms worse, meaning that as time goes by it may be best to review or reduce the doses of some tablets.
People at this stage of Parkinson’s disease benefit more from more holistic assessments. This is offered by the day hospital services at various sites around Edinburgh and Lothian, and people can be referred to these for a few weeks to be assessed.
Parkinson’s UK offer information and support for those at more advanced stages of the disease. NHSInform provide information on the importance of spiritual care and some practical help.
If you are particularly trouble or worried by some symptoms then you can talk to your Parkinson’s nurses specialists or doctor when you next see them.
Power of Attorney
All of us are at risk of suddenly becoming unwell. If this happens, we may not be able to understand what’s wrong or be able to make or communicate decisions for ourselves. This could be a short-term problem or could last much longer, depending on what the problem is.
To help in such a situation, it’s possible for everyone to register one or more Powers of Attorney for themselves. A Power of Attorney should be someone you trust to make decisions for you that would reflect what you would want to happen. People often choose a member of your family, close friends, or perhaps a solicitor.
There are two types of Power of Attorney. You can appoint the same person to be both types, and that person then has a legal right to act on your behalf.
- A Continuing Power of Attorney is someone who can look after your property and finances.
- A Welfare Power of Attorney is someone who you trust to make decisions about your health and care, but only if you are unable to do this yourself.
Powers of Attorney are granted by the Office of the Public Guardian (Scotland)
Age UK also provide a factsheet that answers some common questions.
You can ask a solicitor to put together a Power of Attorney for you. However, if you want more advice then VOCAL, the carer support charity, provide free consultations and assistance with those looking to arrange a Power of Attorney.
Key Information Summary
If you have complex health problems, it can be important for healthcare staff to be able to understand all the background information to their illness quickly. This could be in an emergency such as when you phone an ambulance or are sent to hospital.
A Key Information Summary is an electronic record of your information which can be created by you GP and may be accessed in Scotland 24 hours a day. It can be seen by paramedics, NHS 24, GPs in out-of-hours centres, and A&E or hospital doctors or example. It contains information about:
- What you’re like when your well
- Who to contact in an emergency and next of kin details
- Who your Power of Attorney is
- Your past medical history
- Your medications and allergies
- Advice on what healthcare staff should do in an emergency
- Whether you want to be sent to hospital or not
- Your DNACPR status (see below)
- A summary of your anticipatory care plan and where to find it (see below)
If you would like your GP to create you Key Information Summary you have to give them your permission. They can then discuss what details you would want it to include.
Anticipatory Care Planning
It is important for anybody with an acute illness, whether it is Parkinson’s disease or something else, to think about what they may or may not want in the future. Sometimes this may include more information than it is possible to hold in a Key Information Summary (KIS).
Important decisions about how you want your health to be managed, how or where you want to be cared for, or your finances for example, are very individual. Communicating this with those around you, including doctors, nurses and carers helps ensure that your wishes are taken account of, even if you become more unwell and are less able to express them.
By taking more control of your health and planning ahead:
- You can be better informed about your health and any medical conditions
- You can be better prepared for everyday challenges
- You can be better supported when needed, and
- You can manage your money and property.
Anticipatory care plans can be very broad and cover many aspects of someone’s life. However, not everyone has to complete all parts of a plan, or they may choose to put more detail in to the bits what are important to them.
Anticipatory care plans are usually put together and led by your GP, but if you have a long-term condition like Parkinson’s disease they it will be important to involve you Parkinson’s specialist nurse and doctor.
If you would like more information on Anticipatory Care Plans, please consider some of the following pages:
- NHS Inform introduction to anticipatory care planning, including videos and information on the MyACP.scot app
- Health Improvement Scotland also provide advice on different things to consider, including advanced directives.
There are also a series of videos introducing Anticipatory Care Plans, with people’s own examples of why plans were important for them.
Simple questions that you can consider and help you decide if an ACP is worthwhile are:
- What matters to you just now?
- What do you worry about?
- Have you thought about what happens if you deteriorate?
If it’s relevant to you, thinking about the answers to the 3 questions can help your GP decide what your anticipatory care plan or Key Information Summary should say. For example, thinking how you would like to be treated if:
- you suddenly collapsed?
- you had an infection that was not responding to antibiotics?
- you were no longer able to eat and drink due to an illness?
For each question, you may consider whether you would want:
- to be sent to hospital for tests and treatments
- a family member or Power of Attorney to be contacted to discuss the options
- not to be sent for more tests or to hospital, but be treated as best as possible where you are and made comfortable
St Triduana’s GP practice in Edinburgh has put together a form to explore some of these questions with people who live in care homes, which you may find helpful.
Memory Problems
A common topic that can cause people a lot of worry is what would happen if their memory worsens. We know that memory problems, or ‘cognitive impairment’ and even dementia is associated with Parkinson’s disease, but by no means affects everyone.
If this is a worry for you, some very useful advice can be found on the About Dementia section of the Alzheimer’s Society website.
Wills
It is important for everyone to consider whether they need a will. A will makes it clear what happens to your money, property and possessions after your death.
A will is normally made through a solicitor. There is more information explaining the process of making a will on the UK Government website.
Cardiopulmonary Resuscitation and DNACPR Forms
Cardiopulmonary Resuscitation (CPR) refers to a variety of emergency treatments that can be tried should someone’s heart suddenly stop beating or they stop breathing. It can include pressing on someone’s chest, mouth-to-mouth breathing and electric shocks.
Everyone’s heart and breathing stops when they die, and if they have died at the end of a long or terminal illness then it will likely be distressing to try and make efforts to reverse this. In this instance, the person may have wished to be allowed a more natural and peaceful death.
If someone is fit, they have a health heart and other organs and they suddenly stop breathing or lose their pulse, then CPR has a chance of helping them recover so long as the problem that caused their heart or breathing to be stopped can be treated.
Unfortunately, we know that the more health problems people have, the less likely it is that CPR will work. Even if it did, that person could be left with a much lower quality of life and often never be fit enough to get out of hospital.
Some people have very clear wishes about what they would want to happen in such a situation, others do not want to think about it, and many of us don’t know.
For people where it has been agreed that CPR should not be started, a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) form can be put in place. This may just be in place if someone is in hospital with a short illness, or it may be something the person keeps at home with them in the long term.
If someone has a DNACPR form, then making sure their Power of Attorney knows, that their GP is aware, and recording it in a Key Information Summary or Anticipatory Care plan is all very important.
This is something that is not specific to Parkinson’s disease but is important for all of us to think about as we get older or live with long term health problems, especially those that get worse over time.
For more information on DNACPR forms, you can talk to your GP or your Parkinson’s team.
There is a Cardiopulmonary resuscitation decisions: information for patients, relatives and carers leaflet from the Scottish Government explaining the role of the forms in more detail.
This series of videos from NHS Wales where people, doctors and nurses discuss why CPR and DNACPR forms are important, and it is still relevant to those of us living in Scotland.
