Advance Care Planning Conversations
One thing all humans have in common is that they will enter the world and leave the world in the same way — birth and death. In our society, speaking about death has almost become taboo; yet it is something that we will all face one day. Advance care planning conversations are some of the most difficult conversations to have initially, but will benefit later in the decision making process when end-of-life decisions have to be made.
Conversations about advance care planning and end-of-life desires are best to have when someone is healthy. However, that's usually when people feel less urgency and put it off. When people are sick, advance care planning is much harder to talk about as the reality of the end of life becomes more apparent. Many people perceive that if they talk about end of life, it will happen sooner. The reality is that whether you are healthy or sick; young or old, it is never too early to talk about advance care planning and end-of-life issues. None of us know how today will end, as our lives can change quickly.
Not only is it important for others to know your wishes, but it is also important for you to know the wishes of your family and friends. Advance care planning conversations benefit everyone. Documenting your wishes is just as important as having conversations. See Create Your Advance Directive for more information.
Starting a conversation with anyone about advance health care planning can be challenging.
We understand and can help you with tips on how to start to talk:
- With family and friends
- With your primary care provider
- With specialty doctors
- If you are admitted to the hospital
Some questions you may ask are:
- If you could plan it today, what would the last day or week of your life look like? Who would be there? Where would you like to be?
- What are your fears or concerns about the process of dying?
- What care would you want during a severe illness or as you were dying?
- What kind of care would you like to receive if you found yourself suddenly in a vegetative state?
- Where would you prefer to spend your last days if you were ill? At home? At a nursing home? In a hospital?
- Who would you want to make medical decisions for you if you are unable?
- What are your beliefs about how long life should be preserved? Are there any physical or mental conditions that would make you believe that life-prolonging treatment should no longer be used?
It is OK to ask about what the end of life may look like and what treatment options are available.
Some questions you may ask are:
- Will you talk openly and candidly with me and my family about my illness?
- What kind of decisions will I and my family have to make?
- How will you help us make decisions about my illness?
- What will you do if I have uncomfortable symptoms?
- Will you be available to me when I am close to the end of my life?
- How will you care for me throughout my illness?
It can be overwhelming, especially as you learn about the diagnosis, treatment process and side effects. Your health care provider will consider what treatments to offer based on your current state of health, your current level of activity, the availability of treatment and what benefit you would receive from treatment.
Regardless of what your provider offers for treatment, you always have the choice to agree or refuse the treatment. It can be difficult to speak with your provider about refusing treatment.
Questions that may be helpful to guide the conversation with your provider are:
- What are the benefits of treatment?
- What will I gain by doing this treatment?
- What would my life look like without doing this treatment?
- What would my life look like living with the side effects of this treatment?
Even without having conversations about advance health care planning, people get sick or find themselves in a crisis. When health care providers talk to families, it can be hard for families because they are unsure what decisions to make or how their loved one would make decisions.
Some questions to have with the doctors may be:
- Why is my loved one in the hospital/emergency room/critical care unit?
- What has happened since then?
- What other medical problems do they currently have?
- What treatments are being given or are being planned?
- What are the possible outcomes of each treatment?
- Are there other treatment options?
- What are the burdens of the treatment as compared to the benefits?
- What decisions do we have to make right now and what decisions will we have to make later?