This past week a family I know made a very tough decision to discontinue aggressive medical intervention for a son/husband/father. He wasn't old. He didn't have multiple chronic diseases. His family had informed themselves with good information about the outcome of his injury, knew what their loved one who could no longer speak for himself would want and then acted accordingly. The selflessness of this choice and the compassion with which it was made inspired me to once again press all my friends, family and residents to have what is often perceived as a very difficult conversation.
The Center for Medicare/Medicaid requires skilled nursing facilities to complete documentation of person's wishes to receive or refuse certain kinds of treatment (tube feedings, cardiopulmonary resuscitation, etc.). We have to ask and complete what is called a POLST form. The problem is that the form is only as good as the conversation that accompanies it. After forty years, I'm pretty sure many people do not fully understand what they may or may not be choosing. I'm also convinced that these forms, which can serve as physician orders and travel with a person to the emergency room or hospital, are reviewed often enough. As many in the health care field know, clinicians may also find it difficult to be candid about probable outcomes and effectiveness of aggressive interventions in cases of multiple disease processes, metastatic cancers and advanced age. It's no secret that 90% of our health care dollars are spent in the last thirty days of life.
Why is our culture so opposed to talking about one of what my grandmother called the only certainties in this life, "death and taxes?" None of us likes to think about the end and no one who loves us likes to think of the world without us. There is a flip side. As I mentioned in my last blog, it's a very small group that get to be healthy until they go to sleep and don't wake up. Talking to my husband this morning, I asked him again what he might want.
"Well, if I knew my time was short, I wouldn't want aggressive medical procedures."
"How about if you had an unanticipated stroke that left you unable to walk, get yourself to the bathroom or swallow?" I asked.
"No, I draw the line at someone having to take me to the bathroom or clean me up."
"What about if you could get around but were in middle or advanced stages of dementia?"
"I wouldn't want that either."
My point with my husband is that it is easy to project what we might want if we know the end is near, but so often, our families are left to figure things out when an unexpected crisis occurs. My husband is in terrific health and jogs several miles a day. He would expect full resuscitation and likely get it if he collapsed out on a run. He also will be 79 on his next birthday. As each year passes, the chances that he will continue to enjoy exceptional well-being diminish. If we don't review his choices periodically, he will also have full measures ten years from now when the outcome might not be what he desires.
Unlike my husband, I already have succumbed to several chronic diseases for which there is treatment but no reversal. Being in health care, I have made my wishes clear to my family for three decades. I've seen how CPR turns out most of the time. As a recent editorial in The Journal of Post-Acute and Long Term Care Medicine states, "The public's impression of the success rate of CPR (and the kind of shape people are in after receiving it), thanks in large part to the entertainment industry's portrayal of it, is wildly optimistic." (K.E. Steinberg, JAMDA, 15 (2014). 455) People who have observed videos of actual CPR being performed-even on a manakin-often change their minds about electing for it.
Unfortunately, some people feel that if they say they don't want us to try to save them after they stop breathing, their heart stops or they can no longer swallow, we won't try to fix anything. That isn't the case. Even if you are declining all the life-prolonging options, we will still prefer to treat those things we can reverse. That gets confusing for families. When my husband's father who was in the late stages of dementia developed a urinary tract infection, we treated it. My mother-in-law was unhappy about this, feeling she had been specific about his wishes. I explained that although this might prolong his life a little, not treating it would make him most uncomfortable, so why not make his remaining time as pleasant as it could be.
There are people that can help you understand what your options are. They can help your family understand. But nothing can take the place of your candid conversations with your kids, your spouse, your closest friends. It will assure that the right decisions honoring your wishes are made when the time comes without terrible stress on those who must make them if you can't. And let's be realistic. As I heard an Englishman say on television years ago, "America is the only country in which people think death is optional." It isn't. Do advanced care planning. You can always change that plan with good information from your doctor and/or your personal preferences. Have those forbidden conversations today.
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