None of us wants to think about the end of life. As Bugs Bunny said, “I’m too young to die!” Besides, we don’t have time – we’re too busy living!
But what is almost more difficult to face is the idea that you might ever be in a coma or have terrible brain damage, so that you could not make your own medical decisions. What would you want then? Would you want to be kept alive indefinitely? Would you want to be on a ventilator? Would you want doctors to do everything possible to save you, or would you want to be taken off all machines? Antibiotics? Fluids?
How does your religion influence you? Would you worry about being a burden on your children? Do you worry about the finances? Or do you feel it is your duty to stay alive no matter what?
These are difficult things to think about, and possibly even harder to talk with your family and your doctors about, especially because we don’t know what will happen
And, of course, there are no “right” answers.
The Conversation Project found that 90% of Americans agree that it is important to have these conversations, only 30% have done so!
And these conversations are not just for young people, or people with long term illnesses, like cancer or HIV. They are for all of us. After all, Terry Schiavo and Nancy Cruzan were in their early twenties when their families had to deal with these issues, which set off storms of media attention.
What do you need?
The Health Care Proxy
The health care proxy names a person who will make medical decisions for you in case you are alive but cannot make decisions for yourself (your Agent).
Who should you choose to be your Agent?
Your health care proxy is ideally:
• An adult
• Not your treating physician
• Level-headed in an emergency
• Responsible and mature
• Knowledgeable about your wishes
• Committed to putting your wishes ahead of their own
• Trusted by and communicative with other family members
• Able and willing to advocate for you
• Not going to inherit from you
• Local enough to be able to advocate over a long period of time
That’s a tall order!
You might be tempted to name more than one person as your Agent, but if they disagree at the crucial moment, this could create more problems than it solves. I always recommend that people name ONE Agent – preferably, the person who will be more trusted by the family and who will take their wishes into account when making difficult decisions.
The next step is to let your Agent know what your wishes are. There are two important ways to do this – by talking and in writing.
Having the Conversation
Perhaps the most important thing you can do is to speak to your family about what your end-of-life wishes are. In fact, this is probably a series of many conversations with many family members, over a long period of time. Even when you are ready to talk about it, those around you might not be. The Conversation Project created a wonderful, free on-line guide to give you some suggestions about to communicate your wishes to your family.
The Living Will
The Living Will puts your end of life care wishes in writing. It is really a gift to your Agent and to your family – it tells them what you would like to have happen, allowing you to have a real say in your care. And it may help them deal with feelings of guilt. It also frees doctors from worrying about liability if you instruct them not to take heroic measures to save your life. Remember – they all took a Hypocratic oath, which says, “Do no harm!”
In some states, like New York, courts turn to living wills as “clear and convincing evidence” of the makers’ intent when determining end of life issues.
Do you want to die at home if possible? Do you want to be kept alive so that your family can be with you before you die? Are you registered as an organ donor? These are also important considerations that should be mentioned in your living will.
You might also want to make relevant non-medical decisions. For instance, you might make a list of your valuable or sentimental possessions and who you would like to get them.
How do you decide what is right for you? Don’t make these decisions alone. This is another reason to talk to your doctor, your mentors, your family members, and others you trust. Read up. The Center for Disease Control has a wonderful website with more resources.
Once your living will is signed, make several copies – give one to your agent, and one to each of your doctors. You might give a copy to your spouse and your children or your parents, also.
And hopefully, having these documents in place will be your insurance to make sure they are never used – like carrying that umbrella when it never seems to rain.