Talking to your loved ones about End of Life decisions

Haje Jan Kamps
May 1, 2017 · 8 min read

Life is unpredictable. It is also beautiful, exciting, and full of love and wonder. And one day, it will end. Isn’t it interesting how we spend so little time talking about that? Our lives coming to an end is something that will happen to every single one of us. I believe we should talk about that with our loved ones.

In this article, I’ll explore what you need to think about. I’ll give you specific discussion points to help you prepare for that conversation.

Note: If you use LifeFolder to help create your advance care plan, we will also generate a custom discussion guide for you and your health proxies.

The final step is the hardest, but also the most important. You need to talk to your loved ones about what your wishes are.

Your wishes, your health proxies, your conversation.

Step two is thinking about what you are looking for in a health proxy. You’ll also need to think about who you want to be your health proxy.

LifeFolder can help you with those first steps.

The final step is the hardest, but also the most important. You need to talk to your loved ones about what your wishes are.

There are two reasons for this. The first reason is to make sure that your close friends and family understand your wishes. The better they know you and what you believe in, the better they can advocate for you.

The second reason is simple. It turns out that even if someone has an advance directive, it is not always followed. You should give a copy to your doctor, but sometimes it can be difficult to locate on short notice. Hospitals sometimes cannot find the document in a high pressure situation. If your friends and family insist that the document exists, the doctors will know to look for it. Even better, if your health proxies have a copy, they can bring it with them to the hospital if required.

What is an advance healthcare directive?

An advance healthcare directive outlines your wishes. It includes some legal language to express your wishes around life support. LifeFolder’s advance care directive also includes a section on wishes and values. This is important to help guide your proxy’s decisions. If your doctors can not reach your proxies, they will use your document to guide their decisions.

What your family and loved ones need to know.

It’s important to tell your friends and family that you’ve thought about what your wishes are.

This can be a sensitive conversation. In my experience, talking about this can be an intimate experience.

It can also bring people closer together. Having this conversation can help you understand each other on a level you never did before.

Bel0w is a set of conversation topics to get you started. You don’t have to do them in this order, but in our experience, this is a helpful approach

Topic 1: “I have an advance healthcare directive”

Points to discuss:

  • Explain what an advance healthcare directive is (the explanation above may help)
  • Share where you keep the original document
  • List who has copies of your advance healthcare directive document

Topic 2: “These are my health proxies”

Make sure your close friends and family know who your proxies are.

Points to discuss:

  • What does a health proxy do? (This article may help)
  • Make sure your proxies know that you have selected them as your proxies.
  • Make sure your close friends and family know who your proxies are.
  • What do you expect from your health proxies?
  • It may be worth pointing out that a health proxy is not responsible for your medical bills. They also don’t have legal responsibility for you.

Topic 3: “This is what ‘quality of life’ means to me.”

Remember that this is not a discussion. Your goal isn’t to change their mind, but to explain what you want.

Some people want to fight to the end. They want to stay alive for as long as possible, using every tool doctors have available.

Other people have a different approach. They might say something like this: “There could be a situation where it is unlikely I will communicate with my grandchildren ever again. If that happens, I don’t want to be kept alive on a breathing machine”. This may be difficult for loved ones to process. But it is a clear and helpful statement that will help guide your proxies.

I suggest you use LifeFolder to prepare your advance care directive. It’s free, and includes 20–30 statements like the one above for you to think about. These make great discussion points to help explain to your proxies what you want.

Points to discuss:

  • What gives your life meaning and why?
  • The best advance care directives includes a list of wishes and priorities. Talk through them with your loved ones. This may take a while, but allowing them to hear you explain your priorities helps them understand. Encourage them to ask questions. When explaining your choices, don’t hesitate to go into details.
  • If you want to be kept alive at all costs, no matter the side-effects, be clear about that.
  • There may be circumstances where you feel that life would no longer be worth living. If so, be clear about that. Consider spending some time exploring where your limits are. Statements like “My life is not worth living if…” may be helpful here.

Remember that this is not a discussion. Your opinions, values and wishes are your own. If somebody has another opinion for what they would want, that is OK. Your goal isn’t to change their mind, but to explain what you want.

Topic 4: “My thoughts on life support”

To your loved ones, this is a stressful and emotional moment. It is important that your health proxy knows what you want.

It is likely that you’ve talked about life support already in the previous section, when talking about quality of life. In this section, it is worth repeating what your wishes are.

Repeating the conversation on life support is useful for a few reasons. A doctor may ask a loved one whether you would have wanted to continue fighting. If the answer is “no,” the doctor will disconnect you from the machines. That is likely to be the beginning of the end of your life.

To your loved ones, this is a stressful and emotional moment. It is important that your health proxy knows with full certainty what you would have wanted.

If your health proxy is unsure, they may decide to leave you on machines against your will. If they don’t understand your wishes, they may decide to stop treatment you would have wanted. Both of those scenarios are tragic and avoidable. Take the time to go over your wishes on life support again, just to make sure.

Points to discuss:

  • Imagine a scenario where it is unlikely you will be able to breathe on your own without a machine. Would you want the machine to breathe for you?
  • Repeat what your “limits” are. Go over the situations where you feel your life would no longer be worth living.
  • Explain to your health proxy that you have faith in them. Tell them that you believe in their decision making powers. Share that you know they will make the right decision if the time comes.

Topic 5: What did you hear?

A good way of completing the conversation is to ask them what they think your wishes are.

Try some of these questions:

  • Do you know who has copies of my advance healthcare directive?
  • Do you know who my health proxies are?
  • As you understand it, what are the things that are most important to me?
  • Do you have any concerns about what we’ve discussed today?
  • Any other questions?

In conclusion

Talking about end of life can be scary. In our experience, it is also an intimate topic that drives people closer together. Don’t be afraid: Jump in with both feet.

Most of the people we have spoken to are worried about having this conversation. That is understandable. The flipside is that once they’ve had the conversation, they are often happy they did. Most people report it was easier than they feared.

I know it can be daunting. Don’t let that stop you. Set aside an hour or so, brew a cup of tea or grab a glass of wine, and settle in. It may be one of the most important conversations of your life. You’ll be glad you did, I promise.

This blog post is at a 6th grade reading level. We think that’s important.

Check out LifeFolder to learn more about planning for the future of your healthcare.

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