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We all want our health care wishes to be respected. If you have decision making capacity you can, and should, communicate your wishes to your doctors. You generally have the right to have those wishes followed as you are in charge as to what treatment and care you want and do not want. However, what if you are ill or injured and lose your capacity to make or communicate decisions? If you have not filled out a health care proxy form and appointed a health care agent your wishes might not be known or respected.
We have heard too many stories about people suffering terribly at the end of their lives and being kept alive by machines, contrary to their health care wishes because no one knew their health care wishes. Now, while you are healthy, is the time to communicate with your loved ones and doctors about your treatment preferences, and to appoint a trusted person to make these decisions for you if you cannot. This is a gift to your loved ones and yourself.
It’s never too early until it’s too late.
Approximately 70 percent of us will lose decision-making capacity at the end of life. So, it is important to complete a health care proxy, designate a health care agent, and communicate your health care preferences. Failure to do so makes it much more likely that decisions may be made by someone you would not have chosen and that those decisions will not be consistent with your wishes. In addition, when no one knows your wishes, conflicts can arise. None of us want to have our children or other loved ones disputing what we would have wanted or what is in our best interest.
There are many reasons that people give for not completing advance directives such as a lack of time, or discomfort with the topic. People always assume they have time to do it later. But there’s a saying: “It’s never too early until it’s too late.” You never know when you might become unable to communicate your wishes due to illness or injury. Advance directives should be filled out now before it’s too late.
Talk With Your Loved Ones
You should discuss with your loved ones what makes life worthwhile and gives it meaning and what would make life no longer worthwhile and meaningful. Decisions concerning life-sustaining treatment are the most difficult for people to make, so you might want to discuss different scenarios to help guide the person making decisions for you as well as other family members. Here are a few examples of situations that might arise that you may want to discuss:
- If you have advanced dementia, are 90 years old, no longer recognize your loved ones and have lost the ability to feed yourself, would you want to be hand fed?
- If you are terminally ill and in severe, intolerable pain, would you want to be sedated to unconsciousness if that was the only way to control the pain?
- If you were unconscious and not expected to recover, would you want a feeding tube?
Your Healthcare Agent
Who you appoint to be your healthcare agent is important. Ideally it should be someone:
01
You trust will be comfortable making decisions even if their own wishes are different
02
Understands your wishes
03
Communicates and interacts well with people
04
Will speak up on your behalf and be a strong advocate for your wishes with doctors and other health care providers
05
Can manage potential conflict between family members. Will not be too emotionally involved to make important life and death decisions
Your Conversation Starter Kit
Suggestions for ways to discuss these and other situations can be found on The Conversation Project website, where you can download “Your Conversation Starter Kit”.
Alzheimer's & Dementia
For families and loved ones of people with Alzheimer's disease, or other forms of dementia.
Plan Today; Trust Tomorrow: A Guide to Completing the NYS Health Care Proxy Form
This video explains what a health care proxy form is and why everyone over 18 years old should have one. It will walk you through the steps to appointing someone to advocate for you if/when you are unable to speak for yourself.