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Talking about the possibility of incapacitation is not an easy topic for your family any more than it is for you.

Since you had a diagnosis, family members are likely to think the discussion morbid. They may also be unhappy about your wishes. It will make it easier if you take the focus off of you. Consider broadening the discussion beyond yourself to what each of you want in case he or she becomes incapacitated or is suddenly in an end-of-life situation. After all, as we see every day on the news, anything can happen to any of us at any time.

Be prepared for all types of reactions.

A holiday or other family gathering is a good time to have the discussion. (In addition to reading the other sections of this article, It may be useful to look at the following website which is intended to help guide the conversation over the dinner offsite link,)

If it's easier, have the discussion one-on-one with family members.

Confirm whether the people you speak with have executed the necessary documents, or encourage them to do so by a deadline.

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Wills 101 Estate Planning Advance Directives

Why Should I Discuss My Thoughts About Incapacitation Or End-Of-Life With My Family?

  • In reality, it's up to your family whether to fight or support wishes you express in a Living Will and other advance directives. A discussion will help bring them on board. The documents under discussion go a long way to avoiding the awful situations you read about or see on television where a patient's loved ones are torn about what to do, where they fight with each other, where they even drag the matter into court and where precious finances are used up while the patient is being made to live in a manner he or she didn't want.
  • Explaining your thoughts and decisions helps you clarify and confirm your wishes.
  • A discussion provides the opportunity to receive feedback that may cause you to reconsider some of your choices.
  • You can use the discussion as an opportunity to find out what the people you're closest to want if they become incapacitated and can't speak for themselves. The information will help reduce stress if you have to make decisions for people you love if it should come to that.

Where Should We Have Our Discussion?

To have the discussion about a living will, health care power of attorney or DNR: choose a place that is comfortable where you won't be disturbed and people will feel comfortable discussing sensitive, personal issues. (It couldn't hurt to have tissues nearby in case the discussion gets emotional.)

If you can't find such a place, find a quiet place where you won't be disturbed too much and other people aren't likely to overhear your conversation.

If you make a major production out of choosing the place you could set off alarm bells that add a difficult dimension to what could already be a difficult discussion.  

With Whom Should I Discuss My Wishes?

It is advisable to discuss your wishes with
  • The people who will be asked if something happens whether to accept your wishes, such as a spouse, brother, sister, parents, adult children.
  • Everyone whom you believe should know your decisions.  This may include a life partner, yet exclude a brother or sister with whom you are not close.
  • Of course, your doctor and lawyer should have a copy of your Living Will or Health Care Power of Attorney.

What Exactly Should I Talk About?

Calmly assure your family that the discussion should not be taken as a sign that you are giving up or surrendering in any way. However, at the same time stress that it is very important that you know each other's thoughts and wishes on how things should be handled if certain things happen. Consider starting the conversation with a story about someone else's experience (such as someone you know or someone in the news such as Terri Schiavo) or blame the conversation on your lawyer (such as "While discussing some legal documents, Gerry wanted me to talk with you about end-of-life medical care.") 

If your family doesn't usually deal with what they think of as negative situations, or words that imply things that are too hard to handle, think of words you can use to describe the overall situation. For example, one of our clients stated to his family: "You know, there's a big difference between giving up and letting go. I certainly don't intend to give up or surrender. However, the time may come for me to let go and I may not be in a position to tell you when that time arrives. I want you all to be clear just when I think it will be time for me to let go." Then he went on to explain his wishes.

Consider describing your general attitude rather than specifics. However, if there are particular matters or situations you care about, it will help forestall a family fight if the circumstances ever do arise and it is time to carry out your wishes. (You can discuss specifics with the person you choose as Proxy under your Healthcare Power of Attorney).

Make clear to the people closest to you that the person you name in your Living Will and other advance directives will be the person who should be allowed to make the decisions described in the document. Let them know you have had, or will have, extensive discussions with that person and he or she knows what you want.

If you have executed a Health Care Power Of Attorney, encourage the rest of the family to follow the Proxy's instructions and to encourage the doctors to do the same. 

  • You may want to emphasize that you and the Proxy have discussed your wishes thoroughly and you have complete faith in the Proxy to know and follow your wishes.
  • If there are protestations or disagreements, they will hopefully be brought up when you raise the subject so you can deal with them.
  • If you feel it necessary, you may want to ask each family member to agree to accept the decisions of the Proxy as they would your own.

If you do discuss other family members' desires:

  • Ask for the general principles that the person wants followed.
  • Ask for specifics if the person has thought about them.
  • Who is the person or people to make the decisions?
  • What documents has the person executed? Where is the original? Who has copies?
  • If no documents have been executed, when will it be done? (Preferably, set a deadline.)

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What Reactions Should I Be Prepared For?

We are all different, and so are our relationships with the people closest to us. Responses are likely to range all over the place.

Don't be surprised if people try to avoid the topic:  "Oh, goodness. We don't even want to think about that. You should be thinking positive."

Some people may be even more adamant and try to refuse to talk. It's their choice if they choose to leave. Talk to whomever remains, even if it's just one person.

Don't be surprised if the discussion leads to a discussion about other matters the family doesn't usually discuss. There have been reports that this type of discussion leads to a family healing once matters are aired.

Do I Execute A Living Will And Other Advance Directives Before Or After The Discussion?

There is no best way to do this.

If you think your family would try to persuade you not to execute the documents, perhaps it is better to execute the documents first, then have the discussion. If you expect a firestorm, it may even be better to execute the documents before even speaking with the person you would want to appoint.  If the person ultimately declines to serve, you can easily redo the documents.

                                                Written in cooperation with:
                                                Laura Mosiello, LCSW-R
                                                New York, New York