Glossary of Terms
Please read this before proceeding:
Important Disclaimer: The following information is neither legal nor medical advice. It is information gleaned from public sources such as Google and the public library, intended to help you navigate the complex world of health and social services.
It is important to always ask questions when health or social service professionals use terms or give information you don’t understand. If you don’t understand what someone is saying ask them to repeat the information in simple, easy to understand words. Ask them to write down or email you the information. If they refuse or you still don’t understand, record the terms, words or sentences being used and ask someone else to help you better understand. NEVER make a decision or agree to anything until you understand exactly what you are being told.
You are welcome to contact us anytime for assistance. We are not health or social service professionals, but we can try and point you in the right direction.
Do your own research or ask someone to help you.
Well-intentioned health care and social service professionals will sometimes tell you: “don’t look that up on Google” or “Don’t ask Dr Google”. This is because they are often worried you will find wrong information, incomplete information or information that will scare you off making what they believe are the “right” decisions.
For example, the use of 81 mg of “baby aspirin” as a prophylactic (preventative) treatment for stroke is common – some people will read that baby aspirin may cause additional brain bleeds in older adults. This is a complex issue with no easy answer: but that doesn’t mean you shouldn’t do your own research. Once you have done research – ask your Doctor or pharmacist to further explain the issue and help you make the right decision.
But remember, if you are capable (a term we will define here) you have the right to make an in informed decision for yourself.
Ask Google, Ask ChatGPT: Can AI help me make the right decision? Yes, of course. All information is helpful. But be careful - ChatGPT makes mistakes – it is trained on larger data sets and may pick out the wrong information without knowing it has made a mistake. Chat GPT once famously claimed Hilary Clinton was the first female President of the US – when the US has never had a female President.
Just because ChatGPT tells you what you want to hear – does not mean it is correct. Always double check with a professional or read a book on the topic from your local library (or better – do both!)
In our experience as stroke survivors, if you have done your own research and you are asking good questions and a professional tries to shut you down or you feel shut down, don’t be afraid to exercise your right to seek help. That’s why we started this peer-driven movement. Reach out to us and we will point you in the right direction. Attend our monthly meetings, share your stories and we will share ideas and tips.
Our first term is Advanced Care Planning: we used Chat GPT and it gave us an American definition of Advanced Care Planning – so you can see, AI needs help just like we do!!
Advanced Care Plan – is a PROCESS – NOT A DOCUMENT. It is a fancy term for planning for your future – everything from where you will live when you get old to what you want done with your favorite ring after you are no longer here.
Everyone should have an advanced care plan – your wishes and hopes documented in writing after a good chat with someone you trust who can help make decisions for you in the event you cannot make decisions for yourself.
The Ontario Advocacy Centre for the Elderly tells us:
Advance care planning is the discussion of wants and needs regarding future care that a person may have.
When a person expresses a desire for a treatment or not to have a treatment in the future, it is a “wish” … WISHES ARE NOT CONSENT.
If you did Advanced Care Planning before you had a stroke, good for you! You are ahead of the game.
If you did not do Advanced Care Planning before you had a stroke, a social worker or other health care provider may come to you suggesting Advanced Care Planning, or even make you feel that you have to do an Advanced Care Plan.
You should have someone you love or trust with you to talk about your wishes – where you want to live and how you would want to live if you cannot care for yourself, what care you would want if you have another stroke, a heart attack or similar catastrophic health care crisis.
A Power of Attorney for Personal Care may be suggested; this a document appointing or designating someone you trust or love to make important decisions about your health in the event you cannot make those decisions yourself. You do not HAVE TO DO a Power of Attorney Document if you do not wish to – but it is a good tool to have in your tool box. The Power of Attorney document does not lock any decision in stone – you or your loved one or whoever you designate to make your decisions may change their mind about any treatment at any time.
A Power of Attorney Document is NOT a Will. A Will is a document that comes in to force after you have died. A Power of Attorney Document comes in to force while you are still alive but cannot make decisions for yourself.
A social worker or other health professional may also recommend a Power of Attorney for Personal Property – this a document that designates someone you love or trust to make decisions about your finances and property in the event you are not capable of making those decisions for your self.
Power of Attorney documents only come in to play when you are not capable – most provinces have similar if somewhat different rules around this so you should just check your provincial rules or guidelines – you may wish to contact your local MNA, MLA or MPP for relevant information.
Each Health care provider may recommend treatment – anything from surgery, to medication to a physiotherapy routine – and may assess your capacity to agree - or not - to the treatment. You might think you are capable of making decisions, but your health care provider may feel you are not. The health care provider should tell you what they think and how they plan to proceed. You may challenge your Doctor or health care provider’s findings, you may ask for a second opinion – but (1) if your condition is life threatening your health care provider may choose to proceed to save your life, (2) your health care provider may consult with the person you designated as your Power of Attorney when you did Advanced Care Planning (3) your health care provider may default to your next of kin as your substitute decision maker (your spouse, children, parents) (4) your health care provider may contact the Office of the Public Guardian to make a decision for you.
So, it is a good idea to have those hard conversations early on with your family, friends, loved ones or others (a Priest, Imam, Rabbi) to determine what your wishes would be, in case you cannot make them yourself.
Advanced Care Planning is also helpful to plan for a time when:
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you need to make a tough decision,
2. you can make a tough decision, but
3. you find it hard to make that decision on your own.
Good examples:
“When should I give up driving?”
“When I will not be able to take care of my dog? What will I do?”
“When will I no longer be able to live independently? What will I do?
How much money will I need to maintain my home and property when I am older or severely disabled?”
Just remember – even if you have an Advanced Care Plan – you can always change your mind. Make sure you talk to someone you trust and document your conversations.
Advanced Care Planning involves Goals of Care conversations. Another term we will look at next week.
External resources, aside from us – your peer-run Stroke Survivor Group, Dr Google and ChatGPT or Meta, other good resources include your local branch of Heart Stroke Foundation, March of Dimes, Advocacy Centre for the Elderly https://www.acelaw.ca/ (Ontario) and Disability Alliance (BC) https://disabilityalliancebc.org/.
If you are a stroke survivor, caregiver, health care provider, legal professional or social service provider and you want to provide additional information or feedback feel free to contact us through our website.