Over the weekend I mentioned the dearth of hospice professionals blogging the Schiavo brouhaha and got into a discussion about my mother-in-law and blogging. After a discussion with another hospice blogger in my comments and a few days time, my mother-in-law is indeed joining the fray. She’s not ready for prime time on her own blog, but I’ll take the baby steps. Below is her test post, entitled simply “Some Thoughts from a Hospice Nurse”. If you enjoy it, please let me know so we can start her blogging in earnest ASAP.

As I watch the media circus that has gathered outside Terry Schiavo’s death bed I am struck by what a caring and opinionated people we are. In the United States, it is generally accepted that we are a death denying society. We try so hard to pretend none of us will ever have to die.

Before the Hospice movement came to this country in the mid 1970”s, death took place behind the closed doors of hospitals. Children weren’t allowed in to say goodbye to parents or grandparents. Friends were kept at bay. The funeral services were elaborate rituals designed to help prevent the loved ones from thinking about the finality of the death. We couldn’t even use the proper names for diseases. Instead we said things like “female trouble” or “you know, the Big C” as if even saying the name out loud would put us in jeopardy of getting it ourselves. Children were kept away from funerals because they might become too upset or (worse yet) not understand. How could they understand if parents wouldn’t (couldn’t) talk about it?

And yet if we go back even further, say to the turn of the 20th century when we were still primarily a rural nation, death was a more natural and accepted part of life. Grandma’s bed was moved into the kitchen to be closer to the warmth of the stove. The children sat at the kitchen table and did their homework, squabbling as always. On their way outside to play they might plant a kiss on Grandma’s face as they ran past. When Grandma died, all family members paid their respects. Her body was laid in state in the parlor. Friends and neighbors visited. Food was brought in and consumed by all. There was a procession to the cemetery. And if it was a small baby who died in childbirth or from whooping cough or one of the many other childhood diseases that was rampant in that time, all the brothers and sister still said their goodbyes. Almost every young adult had lost a brother or sister in childhood either from illness or accident. We knew all too well then that one could die at any time of almost any cause.

I guess it was inevitable that as we conquered childhood diseases and learned how to keep the very youngest and the very oldest of us alive, we did begin to think just maybe we could conquer death itself. But somewhere along this rush of technological miracles to increase the quantity of our life, we forgot to consider the quality.

The essence of what Hospice does is to help explore with people the myriad of choices available to us today and to facilitate the choices people make with regard to their own care. Many times we don’t realize we can say no as well as yes to treatment. We can say no to medication, to food and to water if that is our considered desire at that particular time. We can also change our minds at any time.

A Living Will is a very important document in this fast paced, technological, dangerous world. It spells out in writing, step by step, what we do want and what we do not want done for us in the event we cannot speak for ourselves. We can also choose a durable medical power of attorney. We designate someone we trust to make medical decisions for us.
Absent that written document, we have a system, a hierarchy, of next of kin who have the legal obligation to make our decisions for us. If we are over the age of 21, it is spouse, children, parents, siblings in that order. This law is not perfect but it is the law. In my work as a hospice nurse I have witnessed parents making decisions for an adult child in his 40’s that were at odds with that person’s wishes as stated to his life partner who had no legal standing in the decision making. Sometimes, those same well-meaning parents would prevent the partner from being allowed to visit in the hope that the patient would find salvation before death and not suffer forever in the hell of their belief system.

These are painful decisions and situations that are enacted every day in our country while we all struggle to do what is best and what is right for those we love. It is an imperfect system but it is what brings us order from chaos.

To me, one of the very sad things about Terry is that all of the emphasis is on starving her to death. We are once again, turning our blind eye away from looking at the quality of her life. She does not seem to have purposeful movement. This means she cannot reposition herself, she is constantly at risk for bedsores. She does not swallow without chocking. She probably needs frequent enemas and digital disempactions to empty her colon. She has not has any privacy for many years. Would any of us want to live like that for either the pleasure of our family members who want to keep us available to them or for the faint hope of a spontaneous recovery “sometime” in the future? I think most of us would answer No.

Our technological prowess has brought us this dilemma. I am sure it seemed like good medicine initially to insert that feeding tube. It kept her alive while we searched and researched a possibility of a cure. But the time came when we had to begin to realize that her condition was permanent and hope for cure was a futile hope. Just as those on the Titanic came to realize, it was time to slip into the cold water and the inevitable death that followed.

I think we should do everything technologically possible to keep persons alive while we assess and explore their circumstances. The responsibility that follows is we must be brave enough to let go when all our wisdom of today tells us our best efforts cannot reverse the situation.

Terry’s husband has been very brave to fight for what he believes she wishes. Terry’s parents are hurting and fighting for what they believe she wants. Our imperfect legal system says it is up to Terry’s husband. We need to respect his choice and to support him and her parents as they all say their goodbyes to a woman who really died 15 years ago.