MSA Trust

02. Advance Care Planning

Reading this information may be challenging and distressing for some. This is only natural – none of us want to face our increasing incapacity and we worry about our loved ones and leaving them. They will take comfort knowing you made the choices right for you and took some control in a difficult situation.

Being brave enough to confront the realities, share with those you love and discuss honestly what needs to be done and how, will allow you all to live the best life possible and create positive memories despite the difficulties imposed by MSA.

We know there may be significant ongoing changes to your health, particularly changes to your mobility, speech, bladder, bowels and occurrence of infections. All of these will impact on you to varying and increasing degrees over the duration of living with MSA. Giving due consideration to potential situations can avoid everyone having to react urgently and perhaps making decisions which may not be as you would have wished. As each of these functions alter it can be more difficult to influence how you manage them. Planning ahead, with an expectation that they will need to be addressed, may prevent a crisis in the future and enable you to manage your everyday life now much more easily.

It is rare for someone with MSA to deteriorate unexpectedly and rapidly e.g. in 24-72 hours. If this happens there are five things that need checking and treating if necessary:

  1. Do you have an infection? Urinary or chest infections are most likely.
  2. Are you constipated?
  3. Are you dehydrated?
  4. Has your blood pressure become unstable?
  5. Have you had a very recent change in medication that disagrees with you?

For some, managing blood pressure falls, acute breathing difficulties, weight loss and maintaining safe nutritional intake may become significant issues. It is wise to consider in advance if any of these were to become an issue for you, how they might be managed and whether any of the options are acceptable/ desirable for you.

You can make your wishes known as part of Advance Care Planning. While you are able to communicate more easily and make decisions, you can record your wishes about the way you would like to be cared for when you may not be able to make the decisions yourself. This can be in several different ways:

  • You can discuss your wishes with your family and health care professionals so that they can record these – this is not legally binding but will help those making decisions on your behalf when you are less well.
  • An Advance Decision to Refuse Treatment (ADRT) is legally binding, if completed carefully, and allows you to state which treatments you do not wish to receive. An ADRT is a document that states that you have identified a very specific treatment that may in the future be offered to you but which you feel you would not want, or not want in certain circumstances (e.g. antibiotics if having these meant hospital admission for intravenous injection or having a feeding tube positioned directly into your stomach). Even if you make this decision and complete the document stating this legally, you can change your mind at any point in the future as long as you are still able to understand what the treatment is and the implications of your decision (you are deemed to have mental capacity).
  • An alternative way of allowing everyone to know your wishes is to appoint a Power of Attorney for Health and Care Decisions. You state who you would allow to make decisions on your behalf if you are unable to make them yourself. You need to discuss your wishes clearly and have trust in the person / people you ask to take on this role.
  • In many areas people are able to complete a Health Care Plan. This does not have legal standing, but anyone caring for you should take your wishes expressed in the plan into serious consideration when they make a decision about your care, if you are unable to make the decision yourself. Within the plan there may be aspects of care you would not wish to have, such as a feeding tube, but it may also allow you to express your wishes – about food you like or dislike, music you like to listen to, where you would prefer to be if you were less well and other things you would like people to know about you and how you would want to be cared for.
  • All areas in the UK and Ireland have forms to record your wishes and an ADRT (see above). In many areas ReSPECT forms are also available. This records your understanding of your health and current condition, what matters to you in decisions about your treatment and care in an emergency, clear decisions made, those you have discussed these issues with and emergency contacts. There is more information here – https://www.resus.org.uk/respect.

Completing these forms does not mean you are refusing all treatment as a blanket decision or that you will not be given the care you need. If at a future point in time it was thought that the particular treatment you have documented to refuse would benefit you, this would be discussed with you and your decision at this time would be followed. However, if you are not able to express your choice at the time the intervention or treatment is being offered or deemed necessary, the ADRT or ReSPECT forms provides the information about your wishes, and the doctors and nurses will act as you wish.

You may consider as part of your thoughts about future treatments, and what you may wish to happen, whether you would want to receive cardio-pulmonary resuscitation (CPR) if you became so unwell that your heart or breathing stopped. This is something that sometimes is discussed with people who have serious health conditions if they are unwell and need hospital care. When anyone is particularly unwell unforeseen events may occur so it is helpful for those caring for them to know, if CPR was initiated, would this be something that person would want done to them. If you have had chance to think about this, do talk with your family and health professionals involved in supporting you and then if you decide that you would not want CPR a ‘Do Not Attempt Cardio-Pulmonary Resuscitation’ (DNACPR) form can be completed by your GP or hospital doctor and kept in your records.

Further information is available at www.mydecisions.org.uk and https://www.open.edu/openlearn/health-sports-psychology/health/advance-care-planning-acp-discuss-decide-document-and-share.

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.