I've been reading a lot lately about 'dying with dignity'. Euthanasia has been prominent in the media for some time, but it was the Brittany Maynard media storm and the constant reference to 'Dying with Dignity' that I began to find truly offensive.
As a nurse who has worked in hospital based palliative care and with terminally ill people still undergoing active treatment and participating in their lives, I witnessed enormous courage and dignity, as well as love, laughter, fear and pain. As a mother who nursed a child until his death from cancer, I experienced all of these things and more firsthand and I am offended by the idea that it takes courage to end your own life rather than live it to the end, or that taking your own life is more 'dignified'.
Dignity is defined as the quality or state of being worthy of esteem and respect, or of behaving in a composed or serious style. How is a process of living until one dies not worthy of esteem and respect? How is continuing to have hope and continuing to be in relationship with people you love while you live until you die, not courageous?
Why is it considered more 'dignified' to end your life rather than to embrace it and live it until the end?
What are we saying to those who chose to do this, when we call those who opt out 'courageous'?
More than a decade ago I was asked to help out at the home of my husband's cousin. Julia was terminally ill and suffering metastatic brain tumours. When I arrived, her elderly mother and aunt were struggling to take care of her, but Julia had refused to go into hospital. Julia was confused and would often cry out asking why she was in bed, why her head hurt. She was kept in a dark room and even her small children were too scared to go in and see her. None of it was what we might consider 'dignified'. It was scary. For everyone. I worked with the palliative care team to balance Julia's medication so that she was relieved of pain and nursed the family through understanding that this would mean Julia spent a lot more time sleeping. It took a couple of days to get her comfortable.
I put a pretty nightie on her, opened her curtains, played some lovely music and invited her friends and family in, where they sat around her bed and conversed, and laughed. Most of the time Julia slept, but she often smiled, would open her eyes briefly and catch the eye of someone and look happy. Her children would snuggle on the bed next to her. A few days later Julia died, with courage, peace and dignity, in her own home.
Only a few days earlier, she may have been considered a prime candidate for euthanasia, seemingly in out of control pain and everyone around her suffering along terribly. It scares me to think of the last memories her children would have had of her if that had been allowed.
What message are we sending those who are living with a terminal illness, or those who are elderly and feel like a burden when we tell them how brave it is to choose to die rather than how beautiful it can be to choose to live? Life is not always as we want it to be. Sometimes it is full of pain, both physical and psychological. Sometimes we have to modify our desires to be in keeping with our capability, but this doesn't make us less worthy of esteem, less dignified.
Sometimes those around the person with less time to live have to make sacrifices as well. The sacrifice of time, money and energy in order to help a person be courageous, to have hope, to continue in relationship with us while they endure. As human beings, we need one another for most of our lives, and often our needs, or the needs of others necessitate sacrifice and giving from ourselves or someone else. When did this become a bad thing, instead of a sign of good character?
Courage and dignity was what I saw in my beautiful step-son who I nursed through 9 months of illness before his death from cancer. Courage when he was most scared and so much life when he was at his funniest and had us laughing in spite of ourselves. It was what I saw as he lay in bed on his last night of life, holding my hand and smiling, reassuring me. Courage and dignity is what I saw in my husband as he listened while his son's heart drummed its last beat and as he carried his son's ashes to his graveside. It was hard. It was terrifying. It was cruel. The pain my son endured was unfair. He lived and died in relationship with us, and with the greatest of dignity. Not one second of his journey, however difficult and painful for all of us, was wasted. His life was not ours or even his to take. It was his to live until the last.
Everyone should have that opportunity.