It’s My Life (Isn’t It?)

A few weeks ago I reposted an article from a friend of mine, a powerfully written and moving story about her quest to help a friend in his final hours, and the frustrations and challenges she encountered trying to find an emergency notary. If you haven’t read it, here is the link to How the Healthcare System Brought This Expert to Her Knees. Kristen’s story resonated with me, and I was reminded of it recently when I learned of a friend’s father who was being put in hospice. In turn, that got me to thinking about Health Care Directives and Health Care Power of Attorney, and I wondered how many of you have really thought about them, or talked with either aging parents, or depending on your own age or health, your children, about them?

To help set the stage, here are a couple of definitions. Living in Minnesota, I went to the MN Dept of Health website and found their definition of a Health Care Directive. They say it “is a written document that informs other of your wishes about your health care. It allows you to name a person (also called an “agent”) to decide for you if you are unable to make your wishes known.  You must be at least 18 years old to make a health care directive.” Aging Care defines a Health Care Power of Attorney as someone who “gives a designated person the authority to make health care decisions on behalf of the person”.   So basically the person who is the power of attorney makes the decisions, but they also need the Health Care Directive, which you might also hear referred to as a Living Will, to know what you do or don’t want done. Think of those as the set of instructions for your power of attorney. Most states should have links for Health Care Directives available on their Department of Health sites, and there are a number of others available as well. In Canada, according to the Health Law Institute at Dalhousie University “Canadian courts have indicated that advance directives must be respected”. There is a link to Provincial and Territory specific information at the end of this blog. I also have several at the end of this blog for you including one specific to the state of Minnesota. The one for the National Hospice and Palliative Care Organization has links for all 50 states, plus the District of Columbia and Puerto Rico if you scroll down the page a bit. There are a number of other really good resources on this site as well.

Back to the story of my friend, and when I talked with him, he told me they were thinking about putting his father into hospice. I asked what had happened, because the last I had heard his 85-year old father was in the hospital after a fall where he had bumped his head, and was still confused, but that was the last I had heard. He said that his father had a heart attack two weeks prior and was in a coma. He also said the doctors really didn’t hold out much hope and felt hospice was the best option, but that meant removing his feeding tube. His mother was struggling with that because she would see little things and interpret that as signs of meaningful movement, and think that he was maybe improving. His sister, who lives out of state, was on her way home but she was the back up power of attorney for health care if his mother couldn’t make the decisions.

I was immediately transported back 17 years to when my own father was in the hospital following a stroke, when he was only 59. He and my mother had made me their power of attorney for healthcare, and in retrospect while it was the wisest thing they could have done, there were things we should have done differently too. First, I’m a nurse by background and my mom could not have made any decisions even if her life depended on it. She was in shock…there she was, 59 years old, and in the blink of an eye, her life was changed. Don’t misunderstand me, as a daughter I was also in shock, but having had the discussion with him about what he wanted done, I had to think back to that conversation and at least try to remember what he said he wanted to help guide us. Neither of my sisters knew, they just trusted me to make the right choice, as did my mother. I did the best I knew how, between what I thought my dad would want and with my medical knowledge. A couple of years later I actually found the written document again and read it, and was relieved to find the choices we’d made really were in line with what he’d wanted, however the lesson I can share here is that giving the documents to only the power of attorney isn’t enough. Make sure your primary care doctor has them as well, and maybe even give a copy to someone that you consider to be a reliable friend. The reason I say this, is because when there is an emergency I can promise you that if you’re a family member, all higher order thinking leaves your brain and you’re pretty much left with eat (sometimes), sleep (sometimes, and often only when you fall over exhausted), and numb. The last thing on your mind is “now where did I leave the Health Care Directive?”, so having copies with people that can be a little less emotional is extremely helpful for the person who is your power of attorney. They will still need to make any decisions, but if someone else can at least bring them the document, it might help.

Having conversations about end of life care can be very uncomfortable for some people, and starting the conversation can be awkward. However it’s much easier to do so in a controlled, non-stressful environment rather than trying to make last minute decisions without ever having had those discussions at all, when sitting at the side of a bed in intensive care, looking at the face of the person you love and knowing that you’ll never hear their voice again.

Some things to keep in mind that can be helpful are:

  1. These are YOUR wishes. Not your spouse’s, your parents, your children’s, your sibling’s. Yours. You get to choose.
  2. You don’t have to wait until you’re sick, or have a terminal illness. You also don’t have to be old. Any of us can get sick, or have an accident at any time.
  3. Put it in writing. Don’t rely on just telling someone because a) you risk their memory not being good and b) what if someone doesn’t believe them? Remember Terry Schiavo? She told her husband (but not her parents) what she wanted and didn’t put it in writing. He fought with her parents in court for years to be allowed to remove her feeding tube and let her to die, because they didn’t believe that is what she really wanted.
  4. Keep a copy of your wishes on file with your primary care doctor.
  5. Bring a copy with you to the hospital if you’re having a major surgical procedure.
  6. Make sure your spouse knows where the written copy is.
  7. Make sure you have someone besides your spouse as your backup designated Healthcare Power of Attorney. That way if your spouse is too distraught to make decisions, or is also incapacitated, such as if you’re both in an accident, there is another person available to make decisions. You want this person to be someone that will support your decisions, and to understand enough about you and your wishes to be able have appropriate conversations with your doctors if needed.
  8. Where is this person located? Can they be easily reached? With technology today even folks who are on the other side of the planet can be connected through Face Time or Skype for a conference, but if they are on an expedition to Antarctica, that might be a different story. And will THEY keep their head in an emergency?

Don’t wait.

Resources:

MN Dept of Health

Kare11 TV recently published a story on end of life planning. Included in that were a number of other stories and links to not only Health Care Directives, but also things like thinking about our digital footprints and what remains after our deaths, planning discussions with families and thinking about hospice care.

National Hospice and Palliative Care Organization

SAMPLE Health Care Directive form

Health Law Institute at Dalhousie University (scroll down that page for Canadian Provincial and Territory specific links)

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