In 1976, Karen Anne Quinlan was coming home from a party. She was both high and drunk having consumed Valium, Darvon and Alcohol. She came home from the party, made it safe in spite of her condition, but when she got home, she collapsed. She stopped breathing twice and had to be revived. She was taken to the hospital where 21 year old Karen was put onto life support. After a year, Karen’s family went to court to remove her from life support. They were successful, and Karen lived, in a coma for the next 9 years supported only by fluids and nutrition. In 1985, she died from pneumonia.
At this time in our country’s history, choices of life support and ‘critical care choices’ were left up to the doctors. Patients and their families did not have much say in them. Karen’s case did a lot to change that.
This case became well known about the time that I was a young adult. My husband, Don, and I, in large part to this case, discussed what we would want done …or not done, in the case of a critical medical emergency. We talked over time, repeatedly. We never really saw eye to eye, but we’ve made it very clear as to what we want done and not done in certain situations. On May 23, 2007 my husband became suddenly critically ill. Putting those conversations front and center in my mind, I always wondered if I would have the nerve to go with his wishes that were so different from mine. I learned, thankfully, in large part to the number of times we talked about these issues, that I could, in fact make the hard choices. We were lucky. In spite all the doctors predictions, my husband pulled through. His life is almost back to where it was before he became ill. Had I gone with my instincts instead of his wishes, he would be on a portable respirator, trache dependent for the rest of his life. Because he did not want that, the doctors were forced to look at other options.
According to the AARP while 90% of the people they surveyed (People aged 50 and older) understood what a Living Will was for, only 70% understood they could have a Medical Power of Attorney. Less than 40% of those they surveyed had ever even discussed with their families what their wishes would be. They also studied Living Wills after patients had passed away and found that it was roughly 50% that had them honored. However, those who had a Medical Power of Attorney more than 95% of the patients had their wishes honored.
I hope, that by the end of my speech it will be made clear that while each decision for what someone wants done is going to be different, that the fact that it needs to be talked about is of paramount importance. Even as young as 18 -20 years old. It is a subject that no one wants to talk about: the end of their life, but it is one that needs to be talked about with loved ones, again and again, because opinions change, technology changes and health changes can happen over a life time.
The National Association of Estate Planners and Council say “While it is human nature to avoid topics that make us uneasy, there are certain decisions that you avoid at your own peril. One of these questions is whether or not you would like to decline life support when it is clear that death is imminent or a state of coma becomes permanent. Today’s life support systems can keep an individual’s body alive for years, even if the brain is no longer functioning or the person is in constant pain.”
It would be nice if we could talk about this once and let it be. But the truth of the matter is, it is the repeated discussions of the subject that help us to form our ideals, our choices and help not only those who love us, but ourselves as well to understand what we want done. When my husband was in the hospital, because of my understanding of what he wanted that they chose to use a bipap machine instead of a respirator. The fragility of his lungs meant that once he was intubated, he would always be intubated. I have a friend with a severe form of dwarfism who lives on a respirator. She is off of it for just 2 hours a day. She has a portable one that she takes to classes, and a permanent one in her bedroom. They make sure her tracheotomy is clean and hook her up and off she goes. Even knowing that this was possible, my husband did not want to be dependent on machinery. So, the doctors knew that putting him on a respirator was not an option.
I watched families in the ICU waiting room who had never had these discussions with their loved ones. The chaos that they were embroiled in, I was spared. Trying to make medical decisions when your world feels like it is collapsing is the worst possible time to try to figure out what someone ELSE would want done. While I was scared, and definitely upset, I was, to a degree, at peace because I knew I was making the choices he’d make for himself if he were able to do so.
The US Department of Human Services has many service options available in helping you to learn about what is available and what is not. It helps you to know what costs, criteria for certain therapies and paying options, both public and private may be available to you. “Having this information helps to ensure you will have a range of options when you need long term care and makes it more likely that you will have more choice and control over where and how you receive services. “
Whether you have a Living Will or a loved one has a Medical Power of Attorney is completely a personal decision. While a Living Will is great for specific wishes, they have their short comings. There are those times that the hospital or doctor won’t have access to your Living Will. There have been cases where the Living Will has been disregarded in favor of a medical opinion. The Power of Attorney carries more weight because the doctors must abide by your wishes as expressed by your loved one.
The most important thing is to HAVE the conversation with your family, friends, significant other, spouse or whoever else might have a role to play in your medical care. Discussing it with more than one person is important, so that there is a consensus of what you want and one person isn’t bearing the burden of difficult choices.
Now that we have talked about why it is important to have these discussions, let’s discuss the things that influence choices.
There are many things that influence the choices that can be made for critical care. Not the least of which, is what happens when measures are taken to save a person …what will the quality of life be after they leave the hospital.
Some people, like my friend Erin, want as much done as possible to keep her as functional as possible for as long as possible. The idea of what is functional is different from one person to another. Christopher Reeve was left paralyzed from the neck down, with little functioning in his muscles and extremities, yet he considered his life a full one. There are many who do not see that as any kind of life they’d want to live. My husband was among them. His idea of being confined to a wheelchair, needing help to do even basic things was beyond what he could fathom as a life he was willing to live.
One reason many, including Christopher Reeves and my friend Erin choose for pressing on in uncomfortable (at best) circumstances is the frequent advances made in medicine. The possibility that life may not always be like it is now, is a hope that keeps them going.
What type of a life you are willing, or not willing to live needs to be a topic of conversation with any critical care discussion. Many things from accidents, strokes to even illnesses can leave a person with a functioning that requires assistance, either by person or technology.
Now that we’ve talked about the changes in medical science that can influence a choice let’s discuss opinion changes.
When my husband and I have talked, we’ve talked about the many situations that can affect the choices we have made. We discuss our differing opinions and we discuss why we have made the choices we have made. My husband was dead set against ever becoming dependent on a trache or wheel chair bound. During his 45 day stay in the hospital, as he started to recover he realized that needing help wasn’t necessarily the worst thing. That maybe, just maybe being here for his wife and sons was really more important than if he breathed through a trache. His choices have changed. The likelihood of another event like the last one happening is large. The way we handle it may be drastically different than the way we handled it 3 years ago.
As your life situation changes, your wants, desires and needs may change too. As you come to a more concrete understanding of what is going on with your body and the risks that we carry simply by being human you may decide that you want more or less done to save or preserve your life
In conclusion, let me remind you that if you can’t make the choices, someone will be making those choices. The choices will most likely fall to your next of kin and if they don’t know what you want, you may find yourself in a situation you never wanted to be in.
While I realize this is a difficult decision to make, one of the hardest, and the conversation can seem a bit morose please remember that it isn’t nearly as difficult as the families I saw in ICU trying to guess at a loved one’s desires.
I spoke with Dr. Ramona Bates, a surgeon in Little Rock Arkansas about this issue. She summed up her feelings on this whole issue by saying “My family went through this this spring when my mother did not "wake up" after her Coronary Artery Bypass Graft. No living will written but fortunately Mother had let us all know of her wishes and we honored them. We "allowed a natural death"
When it comes down to it, even though you’re talking about what could happen in how your life ends, what you are really discussing is living life to its fullest.
Because of Don's health we've adopted a lifestyle that allows us to live life, fully.
We plan as if tomorrow, things will come to their worst possible conclusion.
We live as if it will never happen. Ever.
This has allowed us to make all the necessary financial and medical decisions, then put them in a nice little box, only to be brought out when necessary. To live life as a 'normal' couple enjoying everything life has to give us.
Life expectancy doesn't matter one whit.
Joy expectancy ...that's our goal.
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