What Are Your Wishes?

Two weeks ago an article was published in the Wall Street Journal titled Why Doctors Die Differently.  It blew up the blogosphere and every social media outlet out there.  I have been waiting to write about it because I have been eager to read follow-up articles and opinions generated from a topic this powerful and emotional.

Is it true that doctors die differently? Yes it is.  There are a few reasons as to why I see this difference to be true.

#1 Cited directly from the article:

In a 2003 article, Joseph J. Gallo and others looked at what physicians want when it comes to end-of-life decisions. In a survey of 765 doctors, they found that 64% had created an advanced directive—specifying what steps should and should not be taken to save their lives should they become incapacitated. That compares to only about 20% for the general public….

This is the absolute truth.  Physicians and other medical professionals are just more comfortable talking about their wishes in regards to the end of their life.  Death is inevitable.  Each of us will experience it.  The hope that we as healthcare professionals share, is that we will get the opportunity to control our death as much as we control our lives.

As a 21-year-old nursing student, I had my first experience in the ICU watching nurses, physicians, and most importantly family members of a 20-year-old man with a severe traumatic head injury struggle, debate, and question the right thing to do in protecting the life of this young man.

I was immediately able to make a connection between this situation and the residents I had formerly cared for in the nursing home.  I saw the struggle and pain in the eyes and hearts of the families visiting their loved ones.  I saw them wishing, holding on, and waiting for a sign of recognition as they stood at the bedside of the person they had come to visit; never skipping a Sunday or holiday.  The next day I filled out a Power of Attorney for Health Care and took it to my parents to sign.

At the time, they expressed significant disinterest in talking about this topic and they told me over and over they would never be able to make the decision I had outlined on paper.  It took a lot of education and talking for them to understand the power of the signed piece of paper: the decision wasn’t theirs to make.  They made a promise to honor mine.

#2 End of life decisions are left to that of the patient.  This is true.  While only 20% of the population has signed health care directives and has talked about their wishes; we expect them to be able to make their own decisions without influence from us.  As cited from the article:

Unlike previous eras, when doctors simply did what they thought was best, our system is now based on what patients choose. Physicians really try to honor their patients’ wishes, but when patients ask “What would you do?,” we often avoid answering. We don’t want to impose our views on the vulnerable.

The result is that more people receive futile “lifesaving” care, and fewer people die at home than did, say, 60 years ago. Nursing professor Karen Kehl, in an article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” ranked the attributes of a graceful death, among them: being comfortable and in control, having a sense of closure, making the most of relationships and having family involved in care. Hospitals today provide few of these qualities.

People look to us as nurses and physicians for guidance through these terrible and unimaginable time in their lives.  Families see us as professionals. We do this for a living, we see this everyday, and we more than likely have experienced this in the past.  They ask about timelines, timeframes, probabilities, possibilities, hope, and what is the reality. How do you answer these questions? Over the last few years, we as professionals have pulled back from answering these questions. It’s true we don’t want to influence you when you are vulnerable but sometimes I think maybe we also want to the avoid blame.

#3 I believe in the existence of a conflict of interest.

I have worked with and cared for patients and families all across the country: coast to coast.  I wish I could say that my experiences have confirmed that all health care providers and organizations are altruistic.  It isn’t true.  I have watched many nurses and physicians tear up and be present, in person and spirit, as the life of their patient is lost.  I know practicing health care providers exist whose focus is always on the person they are treating and not the illness. However, I have also worked with heath care providers who see opportunities to make money and further their career through research, treatments, and diagnoses.  This point was well illustrated in a personal story in a recent article written by Carolyn McClanahan a physician writer/contributor in Forbes in response to this topic.  

What is important to remember; patients aren’t helpless in this.  The best anyone can do to empower themselves and their families during these difficult situations is to seek information and begin a conversation.  Talk to your primary care provider and the specialists you see.  Ask them about how they incorporate advance directives and decision-making processes into the care of their patients as well as their practice.  Inform yourself about the laws that regulate decision-making federally as well as in your state.  Seek information from your insurer and health care organization about the processes they have in place for getting an advance directive on file.  Most importantly, talk to your family and friends and ask them to listen.  Making a decision like this needs a great deal of support.  Ask for it.

April 16th is Nation Health Care Decisions Day.  It is the 5th Annual.  This is a relatively new topic on the health care front; it is an important one.  Making decisions for yourself and finding a friend or family member that will honor your decisions enables you to take control of your death and live your life to its fullest.

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