What happens though when the patient decides they are done fighting and want to discontinue treatment? Are they no longer a hero? If they aren't a warrior or fighter or hero, what are they? Are they a loser? Someone who has given up and lost the fight?
Frequently the patient feels as if they are letting down their family by stopping the fight. They feel their family and friends do not want them to quit fighting and they owe them because they have given so much of their time to care for them. The patient's family and friends feel as if they need to make excuses about why the patient has "given up."
I think we need to change our feeling towards stopping the fight. We need to find the hero in stopping aggressive treatment and starting palliative or hospice care. We need to ensure that the person who is living their life, well aware they are dying, know they are just as much a hero as when they were fighting their cancer.
What is courage? It is defined as the ability and willingness to confront fear, pain, danger, uncertainty, or intimidation.
"Courage, above all things, is the first quality of a warrior."
– Karl Van Clausewitz
I can't think of anything that takes more courage than embracing your last days on earth and confronting the fact that you are dying and most likely dying soon. Being able to say "no thank you" to additional invasive treatments and instead focusing on LIVING the last days of your life with your family and friends, doing the things you want, hopefully outside the confines of the hospital. That is courage and we need to celebrate that courage.
The courage of someone embracing their last days does not negate the courage of someone fighting their disease. One patient's path is not right and one is not wrong. Both patients are heroes and warriors and courageous.
One of the most difficult things I had to do as a caregiver of my mother, and probably will remain one of the most difficult things I will EVER have to do as human, was to say to her that it was okay to stop the treatment... that I had called Hospice to see what her options were and maybe she should talk to them as well. That maybe it was time to leave the hospital and come home. I felt as if I was letting her down and giving up on her. That I WANTED her to die.
Of course, me wanting her to die was the furthest thing from my mind. I wanted her to stop hurting. I didn't want to see her lying in a hospital bed, struggling to breathe. I didn't want to see her shrinking away with tubes and beeping monitors surrounding her. I wanted to see her at home surrounded by her grandchildren, snuggling and reading them stories.
What made it hard was that I knew giving up on the treatments meant we were accepting that she was going to die. It was what we all knew.. the proverbial "elephant in the room" but no one wanted to recognize the elephant. Dammit, if we kept at the treatments, surely something would work. There was always one more study or one more clinical trial. Or maybe we just hadn't seen the right doctor. Surely by calling Hospice I was declaring to the world and to her that I wanted my mother to die.
There were not many times I cried when caring for my mother -- mostly because I had to be strong in caring for her and there just wasn't time for a pity party. This was not one of those times where I was strong. After the conversation I cried with wracking gut wrenching, nearly vomiting sobs. It was admitting to her and to me and to everyone I knew that she was going to die. Its been almost two years since she passed and thinking about that moment in order to get it to paper is bringing the tears again.
The most amazing thing happened though. She was happy. After the conversation, I remember her sitting up straighter and looking determined. The doctors looked relieved and glad the decision had been made. Not everyone was on board immediately -- it took my mother some time to convince everyone that she was ready to stop the treatments. But she was sure and I felt good that I had broached the subject.
She came home and grew stronger without the poisoning of the treatments. Hospice came by regularly and provided counseling and medical advice and treatments designed to make her feel better day to day. Not treatments that would cure her but make it so she could live her life until her death.
She lived for three months after that decision and was able to attend her grandchildren's soccer games and birthday parties and go out to dinner with her family. She had streams of visitors and she was able to enjoy their visits in the comfort of a home environment, rather than ill in a hospital bed. She sat in the sunshine and enjoyed the warmth of upcoming Spring.
She is my hero. My warrior. And I know no one more courageous. She confronted the fear of death head on with a smile and embraced the life she had left.
I wish the same for you and your loved ones. Stopping treatments and embracing the time you have left makes you no less a hero. You are a warrior of life and the courage it takes to take that step back from treatments to live that life needs to be celebrated. Bravo for you!