Planning for future care with ME/CFS
Advance care planning promotes care that is consistent with a person’s goals, values, beliefs and preferences. It prepares the person and others to plan for future health care, for a time when the person may no longer be able to communicate those decisions themselves.
Once you turn 18 and you have full decision-making capacity you can make an Advance Care Directive (ACD). Full decision-making capacity means that you can:
- freely and voluntarily make health care decisions
- adequately communicate your decisions
- show that you understand your decisions and their consequences
- show that you understand the contents of your advanced care directives (ACD)
What to think about
- If you were very unwell and not able to communicate your preferences to others, who would you want to speak for you?
- What would you want them to say?
Advance care planning helps to ensure that your loved ones and your doctors know what your health and personal preferences really are.
Common challenges faced by people with ME/CFS during Advanced Care Planning
- A common misconception is that people with ME/CFS have ‘chronic fatigue’ and are just tired. This misconception can leave people with ME/CFS feeling frustrated and alone, making it difficult to form a therapeutic relationship with their health team while living with an invisible illness.
- Health care professionals may have limited understanding of the fluctuating nature of post-exertional malaise (PEM) and the large amount of additional complex symptoms associated making it difficult to gauge the true impact of the illness.
- Prescribing Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) can make people who live with ME/CFS and long COVID feel apprehension about these outdated and inappropriate treatments being incorperated in the future in the event of a loss of decision making capabilities. A clear advance directive can guide future clinicians to avoid treatments that the patient considers to be futile or detrimental to their health.
Interactive Advance Care Directive template availability
You may need up to 3x people to complete the form and make it legally binding: yourself, a doctor and a witness.
There are a few sections (which vary between states) but forms generally cover things like:
- your details, general instructions (allergic to medications etc), special conditions, value statements, religious beliefs
- What to do in the event of terminal or life irreversible condition (including tissue donation)
- Personal statement
- Doctor information, power of attorney information, who you do and don’t want to make decisions on your behalf
We advise that ME/CFS and your wishes are recorded as special conditions with notes, as a part of your value statement (‘as someone who has lived with a diagnosis of ME/CFS for many years’) and in a personal statement of wishes.
Notes to include in the statement / value statement
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. ME is classified as a neurological disorder by the World Health Organization. Around 25% of people with ME/CFS experience severe symptoms, leaving them housebound or bedbound.
You should clearly express if you do not wish to accept psychological support treatments (e.g. CBT), exercise or other ‘rehabilitation’ interventions. You may also wish to describe any cognitive impairments and to state that these do or do not affect your capacity but that you have capacity during the preparation of this document. If you have times of the day where your capacity is better (or your brain fog is usually less) it is a good idea to note this in your statement.
You may wish to include an open statement about your wishes and experience with ME/CFS for inclusion in an advanced directive that can be referred to in your advanced directive as a document that supports the directive and which should be treated as part of the legal determination of your wishes by doctors in the event of incapacity.
Further assistance
Many lawyers are able to assist in the preparation of Advance Care Directives giving confidence that any directive produced is legally sound and expresses your wishes for care.
For free help advise contact Advanced Care Planning Advisory Service from 8 am to 4 pm (AEST) Monday to Friday on 1300 208 582
You can also access ME/CFS information using the links below:
- Emerge Australia’s position statements – exercise and ME/CFS
- Post-exertional malaise (PEM) webpage
- Common symptomsof ME/CFS
Diagnostic symptoms and functional capacity resources
- US National Academy of Medicine (NAM) criteria “Clinicians Guide”
- Symptom Severity Hierarchy
- Sleep and Pain Profile
- NASA Lean Test for orthostatic intolerance (OI)
- World Health Organization Disability Assessment Schedule 2.0 (WHODAS)