Protecting Yourself at The End of Life

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Advance directive

Do you have an advance directive for health care? If you do, is it up to date? I want you to get caught up on this, because I just went through it with my mother, and it’s really important.

Advance directives tell doctors what you do and don’t want done to you when you can’t speak for yourself. The most important part of the advance directive is the durable power of attorney for health care. That means you name a person you trust to speak for you, and the doctors are supposed to listen to your representative. This person will be called your “health-care agent” or your “attorney-in-fact for health care.”

Your agent should be someone you trust, a person who understands your wishes for end-of-life care. He doesn’t have to be a family member, but it’s best if your close family knows who he is.

The other part of the directive is sometimes called a “living will.” In that part, you say your wishes about being kept alive by breathing machines, feeding tubes, and possibly other treatments.

Believe me, if you don’t have a strong directive and a health-care agent who will fight for you, the doctors will do everything. They will keep your heart beating as long as they can, and won’t consider your suffering, your quality of life, or the expense to your family.

According to the legal website Nolo: Law for All, without advance directives, “these important matters could wind up in the hands of estranged family members, doctors, or sometimes even judges, who may know very little about what you would prefer.”

I found out the reality of this in February. My mother June was 91 when she had a stroke while driving. Fortunately, nobody was hurt, and she was taken to a good hospital. Fortunately, she had an advance directive that named me as her health-care agent.

Unfortunately, she had written this directive over ten years ago. It stated that she didn’t want a breathing tube or a feeding tube, but with a lot of exceptions. Like “if two doctors agree that I will probably recover” and things like that.

The exceptions made sense when she was 80, but by last month things had changed. She was much weaker. She had more pain and wasn’t enjoying life much. She had been telling family and friends she was “ready to go.” She was tired. She didn’t want any treatment besides what would keep her comfortable.

Unfortunately, the written directive had not been changed. Also unfortunate was that she and I had not talked recently about her directive and that I had not, in fact, read it in probably ten years. That was my fault. She had been talking about dying and I hadn’t picked up on it, maybe because I didn’t want to lose her.

It wasn’t too bad. My brother Daniel, who was named in the directive as my alternate, and I came as soon as we found out where she was. He had them take out the breathing tube and stopped other treatments that Mom was fighting to remove. They had restrained her to prevent her from pulling tubes out, but once they took them out she was fine.

She died peacefully after a total of sixteen hours in the hospital. I miss her terribly, but I still feel her love, and I’m happy about the life she led. Even the hospital part could have been a lot worse. She had the breathing tube in for less than an hour. All of her friends were pleased and impressed that she got out of this life so easily and said things like “I hope my passing is like hers.”

If we hadn’t had that advance directive, though, it would have been a lot worse. We might have needed a court order to get the breathing tube out. Even though she was 91, even though she had said she was ready to die, they would have kept her alive as long as they could. That’s how the system works. Death is the enemy; keep that heart beating, even if the patient is suffering with no possibility of resuming a life he can enjoy. As long as he can pay for it.

My mother and I agreed that death is not always the enemy. Death is part of life, and people can accept that reality. They can make dying a peaceful, comfortable, and loving thing. The dying person and his loved ones can have time to say goodbye, to heal last differences, to exchange final messages.

It’s much harder to have such a positive death when you are hooked to machines and can’t talk or move. So please, please have your advance directive filled out. You can download a form — here’s one — or get one from your doctor or hospital. Find a health-care agent you can trust, and talk frankly with him about your wishes. Make sure you update that conversation and review the directive every couple of years or when your condition changes.

Encourage your loved ones to fill out their own directives. Consider volunteering to be their agent. These conversations are hard, but they bring people closer together and reduce people’s anxiety about death. They prevent a lot of unnecessary trauma, suffering, and expense. You can find guidance for talking about these issues here.

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