TALK

mother and son talking about end of life issuesNow that you have given your end of life wishes some thought, hopefully with some work in the RESOURCES, it is time to talk to your closest family members, and others, especially the person whom you are likely to choose to speak for you when you are unable to do so. (This person is called your agent (the strict legal term), representative, surrogate or proxy (used here.)

These conversations are very important, even more important than the written advance health care directive. Lawyers say, “put it in writing,” because oral agreements are often vague and difficult to understand. But when it comes to end-of-life wishes, conversations are far more important.

WHY CONVERSATIONS?

There are many reasons conversations are essential. Here are a few, the first being paramount:

  • Should you become incapacitated and lie in an emergency room, or any hospital room, the attending physician, not likely your personal/primary care physician, will turn to those family members standing near and say something like, “Your loved one is in dire circumstances. Here are the options, A, B, or C. Which one of these do you think your loved one would choose?” The family needs to know how to respond to such questions.
  • Or even if you are in a hospital that has your directive, the doctor can’t take the time, or won’t take the time, to look it up. Both happen, though they seldom should.
  • Conversations are a way for you to clarify your thinking. Others may make points that hadn’t occurred to you. You might change your mind.
  • You are in an emergency room and unconscious. The doctor in attendance, of course not your primary doctor, needs to make a prompt decision as to your treatment. S/he doesn’t have your advance directive because you are visiting family and don’t have it with you.
  • You may find that a family member doesn’t agree with your wishes and might argue against them in an emergency situation. If likely, you to try to get him or her to acquiesce to your wishes. If you are unable to achieve this, then you should let others know that this person is not to be involved in health care decisions for you. And you should write in your advance health care directive that this person is not to be allowed to participate in health decisions for you. Hopefully your advance directive will carry the day. Maybe not (more on this below)
  • The attending doctor reads in your advance directive that, under these circumstances, you refuse all treatment and wish to die, perhaps by SED. But if, for religious or other reasons, the doctor disagrees with your directive and chooses to ignore it; s/he proceeds with treatment. This can and does happen, especially in Catholic hospitals.

In most of these instances, if some family member is present, the doctor will most likely take time to explain and discuss options for your treatment. Will family members know what you most likely would want? Not without conversations.

Now you should understand why conversations are more important than your advance health care directive.

HOW TO START THESE CONVERSATIONS

This discussion is in two parts, conversations you have for your own end-of-life planning, and for someone else’s.

Your Own Discussions

Now that you have reflected about what your preferences might be at the end of life, move to the next, the most important, step: Discuss your thinking and your preferences with your spouse or partner, with other loved ones, and with your primary care physician. Maybe also close friends and your minister, priest or rabbi.
You can have these discussions one-on-one, or with a family group. All conversations should be two-way—not just you telling the others your thoughts and desires, but you listening to their responses and their values, which may be different than what you had in mind. You might change your mind in this process.

These conversations can be difficult because end-of-life decisions are very private matters. But are they so personal as to warrant denying yourself the best possible end of life?

We recommend that you start with the Go Wish playing cards at www.gowish.org, mentioned in THINK. Those you are talking to can help you sort them into the three piles. More importantly, you can tell others why you put a card (an issue) into a certain pile.

Your Proxy

The most important person to talk to is the person you choose to speak for you when you are unable to do so. Maybe there should be two conversations with your proxy, one early in your talks, and one after all others. There are three reasons for the last talk—to:

  • Make sure your proxy-to-be is willing to take on this very serious responsibility
  • Share your thoughts and your wishes so she/he knows what you want
  • Encourage your proxy to ask questions so you are both clear on what you want

Also consider writing a letter of instruction to your proxy. This would be like an expansion or supplement to what you write in your formal advance directive.

Your proxy need not be a family member. In fact, because of family dynamics, it may be best to have someone outside the family be your proxy!

Discussions with Someone Who Needs to Do This Planning

Maybe it’s not you but someone you are concerned about that you suspect needs to THINK, TALK, and WRITE. Is someone ill in your family (or maybe a friend or neighbor)? Has that person (called “patient” below, but he or she may not yet be a patient) communicated his or her end-of-life wishes to family or, if no family, to someone close? No? Then you may feel it is up to you to be the one who needs to start the conversation. If not you, who?

The actual planning steps, THINK, TALK, WRITE are the same. When you are helping someone else, you have to start with a conversation or two, in which you get the patient to do some thinking.

How do you begin such a conversation? Look for an opening. The friend or loved one may say something like,

  • “Oh, I don’t know how I’m going to go on living like this.” Or,
  • “Why is the Almighty letting me live like this?” Or,
  • “I read that my old friend, Mary, just passed away after seven months of agony from her cancer and seven days in the hospital.”

Use such opportunities by moving the discussion to the person’s own end of life. You might respond,

  • “Did you know that you can do some planning so your death is not like Mary’s?” Or,
  • “What do you see ahead for yourself? “ If the response is “Oh I don’t know,” you can continue with, “Has it ever occurred to you that you can have some control over how things might go?” Or,
  • Use a just-finished medical appointment to start a discussion about what the doctor said, then move the conversation to the patient’s future.

If you don’t get an opening, then you need to take the initiative by bringing up the subject — as gently as you can. Here are some ways to open the conversation cold:

  • Refer to a recent article about someone’s difficulty at the end.
  • Talk about someone who is ill and dying, or has just died, such as family member, close friend or a celebrity.

Once you get the conversation started, keep going by getting them to say what their end-of-life wishes are. The Go Wish cards, mentioned previously, are an excellent way to get the patient to really dig in.

For more about conversations go to http://www.coalitionccc.org/documents/Advance_Care_Planning_Conversation_Guide.pdf and
www.TheConversationProject.org .

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