1. What do I understand about my health or illness? What have I been told about my illnesses?
It is important to learn about your health conditions so you have a general idea of what to expect in the future. This helps you plan for the future and prepare yourself, your family and friends. You may not be able to answer this question yet. Have a look at the section on the website about learning about my illness and prepare some questions for your healthcare provider.
Priya’s dementia is advanced and because of that she doesn’t really understand her illness or what to expect in the future. Priya’s daughters (her SDMs) know that she has dementia. They know that dementia affects memory and causes Priya to be confused. But they don’t know what else can happen and what to expect as Priya’s dementia gets worse.
Bob knows his heart is weak. But he doesn’t know if his heart disease is fixable or if it will continue to worsen.
He knows that when his legs get more swollen or his breathing gets harder that he needs to call the doctor’s office.
2. What information would I like to find out?
2. What information would I like to find out?
For people who have an illness, some like to know as much information as possible. They want details about their illness and the treatments. Some people prefer to know as little as possible and just be told the big picture. Some also prefer to have family or friends speak to healthcare teams and help make decisions. Keep in mind that learning information is a key part of being able to provide consent for your own healthcare decisions.
- What information about your illness would be helpful or important for you to know?
- Is there information about your illness that you don’t want to know?
- This is a good time to let your health care team know if you want as much information as possible, even if it is difficult or “bad news”.
- Some people feel it is very important to always maintain hope. This may even be when a person is very, very sick. It is possible to be hopeful and believe in miracles and at the same time think about, talk about and prepare for the future. Remember that ACP is about preparing your SDM(s) in the event that you are unable to make decisions for yourself.
- Let your healthcare team know if it is important for you to stay hopeful through this conversation. Also, let your health care team know how you would prefer to be given “bad news”.
Priya’s daughters want to learn what to expect in the future with their mother’s health. They want to learn why she is getting pneumonia so often. They have noticed she is sleeping for more of the day and wonder if this is normal. They also want to know the kinds of decisions they might have to make for their mother and what care options are available in the long-term care facility.
Bob wants to know how bad his heart is and what the doctor thinks will happen. He wants to know if he can still travel to see his children and grandchildren. He also wants to know what he can do to stay active and as well as possible. His son will come to his next appointment so he can learn the information as well.
3. What do I value Most? What brings quality or meaning to my life?
3. What do I value Most? What brings quality or meaning to my life?
Most people have an idea of what a “good life” is. Take some time to think about the things that make your life good and enjoyable.
The VALUES EXERCISE may help you think about what is important to you. See what is important to Althea, Bob and Tran below.
Explore my values
Althea says that being alive is most important to her. To her this means interacting with people – enjoying people’s company, talking with them, listening to music together. That gives her joy in life. She doesn’t value physical independence – she would find value in life if she needed care as long as she could interact with people.
Bob tells his children what matters to him most is his independence. He values being able to take care of himself. He wouldn’t want to be dependent on someone for basic care like bathing and dressing. He recalls his brothers time in the ICU and would not want this for himself. Bob says “Life isn’t worth living unless I have my independence.”
Tran says that being a mother -- being involved in her kids' lives is really important to her. She hopes to watch them graduate university, and eventually start families of their own. Family matters to her more than anything and she wants as much time as she can get with them.
4. What concerns or worries do I have about how my health may change in the future?
4. What concerns or worries do I have about how my health may change in the future?
Think about the care you might need if you have a critical illness or if near the end of your life. What worries or fears come to your mind?
Some people worry about being in pain, struggling to breathe or being a burden on others.
Talking about your worries and fears with your SDM(s) and your healthcare provider can be helpful:
- To make sure you have the right information as this may lessen your fears
- To come up with a plan to try and avoid these situations or make them better for you
- To give important information to your SDM(s) and healthcare provider about your values and things that you would like to prevent from happening
5. What might I trade for the chance of gaining more of what I value or what's important to me
(e.g. more time with family)?
5. What might I trade for the chance of gaining more of what I value or what's important to me (e.g. more time with family)?
At some point in the future, your SDM(s) may need to make difficult decisions about your care. There will be pros and cons to each option.
Thinking about what is most important to you may help you.
For example: Would it be ok to give up some of your independence and accept help with care so that you can remain at home living with your family?
For example: The side effects of cancer treatment may be okay if you could get a lot more quality time. The side effects may also be ok if you could live long enough to make it to an important event (e.g. someone’s wedding or graduation). But there may be a time when comfort and quality of life becomes the most important thing to you even if it means a little less time.
Help your SDM(s) understand what this balance would look like for you.
6. If you were near the end of your life, what would make this time meaningful?
6. If you were near the end of your life, what would make this time meaningful?
You may not be ready to think about this question yet. That’s okay.
- ACP Conversations are a process so you do not have to think about this until you are ready.
- But if you have thought about it, tell your SDM(s), family and friends:
- What is important to you at the end of your life
- Religious readings or ceremonies you want to have
- Music you want to listen to o Books you want to read or have read to you
- Where you might want to spend the last days of your life
- As the time gets closer, it will be important to talk to your doctors and other healthcare providers about what to expect at the end of your life. They can talk to you and your family and friends about what it would look like to spend your last days at home, in a hospice or in the hospital.