Although we don’t like to think about it, health crises happen all the time and often with no warning. In addition, the health of our loved ones, and especially our aging family members, will inevitably decline. When your loved one is in the emergency room or ICU, will you be prepared to make decisions affecting their wellbeing, treatment and care? Are you certain that you know what they would want in different circumstances? Do you want to be responsible for making those decisions in a vacuum?
This is the purpose of a living will. When people write down their wishes for medical treatment or non-treatment in various scenarios, their family can confidently make decisions that they know are in line with the patient’s wishes. It helps prevent family fights. It pre-empts the potential court battles that we hear about in the news. It keeps patients in control of their own treatment even if they are unable to speak for themselves at the time. It is a win-win proposition all the way around.
According to a Kaiser Family Foundation Survey, 97% of people say it is important to write their wishes down. Yet only 37% actually have done so. Many times, even if someone does write their wishes down, they tuck that document away in a drawer or a safe deposit box, and the family is left in the same position they’d be in if there were no written wishes at all. It is most effective when the wishes are written down AND the family talks about them, asks pertinent questions, and understands as clearly as possible what their loved ones want and why. In this way, each member of the family can honor the wishes of the other, regardless of age.
The most awkward thing about having these discussions is getting them started in the first place. Adult children, for instance, don’t want to think about the fact that their parents could die and so they avoid the topic altogether. Or they fear that bringing up the topic will cause their parents to assume that they wish their death.
The reality, though, is that having these discussions and writing them down is more about living than dying. People get to choose how they wish to LIVE in various situations, both when accidents or health crises happen at various times in life, right up until the time when they take their last breath.
Make it a family project
One way to ease into the discussion about treatment wishes is to make it a family project. Try a conversation along these lines:
“You know, we aren’t in control as much as we would like to think we are. Anybody in our family could have an accident, a sudden illness, or a health crisis that requires the rest of us to make treatment decisions for them. That’s kind of scary. I don’t know what the rest of you want, and I’ve never told you what I want, yet it could happen to any of us at any time.”
Or
“I
have been thinking a lot lately about what quality of life means to me, and how
I would want to be treated if I were in the hospital for any reason and
couldn’t speak for myself. I realized that none of you know what I’d want. That
means you would have to make medical decisions for me – and potentially big one
like which machines to hook up or whether to do a surgery – with no clue what I
would want if I were conscious and capable. That’s a huge risk, and I don’t
want to take it.
“So I’d like to have a conversation with all of you about my wishes for
treatment and non-treatment. If you’re
willing to share your own, I’d like to know what you want in case I ever have
to make decisions for you in return. It will probably be different for each of
us, of course, and that’s fine. In fact, that’s the point. I want to be treated
the way I want to be treated, not the way someone else thinks I should. If we
can all do it, that will help each of us stay in control of our own lives and
treatment, while taking a burden off everyone else who may end up having to
make those decisions for us. If you don’t want to participate, you don’t have
to. I’m going to do it regardless, and I really hope you will, too.”
Tools to help have the discussion
There are a number of very useful tools that can help your family think about what they’d want and why. Here are a few:
Documents you will need
An advance directive is a document that states “in advance” what treatment you would and would not want. If someone is conscious and capable of making their own treatment decisions, these would not take effect. They only come into play when the patient is unable to speak for themselves, either temporarily or permanently.
Keep in mind, too, that contrary to what many people think, advance directives do not have to limit treatment or “pull the plug”; they can also be used to request every medical intervention available. They can also be re-done at any time, since a person’s wishes may change over time, with various health conditions present, or with exposure to what others have gone through.
The two documents that should result from these discussions are:
- A completed Living Will. This legal document lists what you want in various circumstances. Each state has a form you can use, or you can use an alternate form like The Five Wishes document that includes a broader range of information.
The living will should be the clearest description possible of the person’s desires. People often list their wishes based on various situations, as they may want different treatments when imminently dying of cancer than when in a coma from which recovery is likely. For instance, it may be worth it for them to have a ventilator if they will likely be weaned off of it and return to a good quality of life, but not wish a ventilator if it is only prolonging the dying process.
- A completed Power of Attorney (POA) for Healthcare. This legal document indicates the primary person responsible for making decisions and carrying out the living will. Each family member should appoint one person to this role, and at least one alternate in case that person is also incapable of speaking or deciding at the time. Forms for this are available from estate planning attorneys, online, or as a part of the Five Wishes document.
Because this is the primary person communicating the decisions, it is crucial that they understand the decisions they have the responsibility to carry out and the why behind the wishes so they can interpret situations more accurately.
One more thing
One of the biggest problems with living wills is accessibility. In order for medical professionals to follow them, they need to know the documents exist. So once you and other family members have completed these documents, give copies to all relevant people – doctors, hospitals, nursing home or rehab center if applicable, the rest of the family, and anyone else who may be involved in medical decision-making. The family member AND the person appointed as power of attorney can carry a copy, scan it in on their phone, keep a copy on a USB drive that attaches to the car keychain – basically employ any method necessary to have the documents accessible if needed.
Living wills and POAs for Healthcare keep people in greater control of their lives and their dying, because someone will be making their medical decisions for them if they are in a crisis and unable to speak for themselves. These documents also take a huge burden off the family’s shoulders, since they are able to make decisions with sure knowledge of what their loved one wants.
Have the conversation. Do it today. You and your family will never regret it.