By Melissa Hollis Brenkert
Losing someone you love deeply, long before her time, is an inexplicable pain. But losing my sister in the long, drawn-out, excruciatingly painful way that she died added a layer to my grief that has been unbearable. It was a sadness so strong that I tried to keep it pushed out of my mind in every way possible. But on behalf of Leslie, I need to keep telling her story so that others can understand what Proposition 106 would have meant for her.
Two years ago, I learned more about life, death, pain, suffering, medicine, cancer, bravery and love than I had ever learned before. Two years ago today, I started to see why it is fundamentally cruel to deny a person the right to take control of his or her own medical decisions. How deplorable it is that we, as a society, try first to limit what medications should be available and then dictate when they should be available and in what quantities. Should decisions that carry such personal consequences be made by the government? Why should we, as thoughtful citizens, be denied that control and therefore be sentenced to endure the unbearable physical side effects of our illness regardless of our own personal desires?
Two years ago, my little sister had been under “palliative sedation” for two days; but, she wouldn’t die for another three – a total of five agonizing days.
Two years ago, I checked my sister into a hospice wing of a hospital, despite her desire to die at home, because we could no longer legally give her enough pain medication at home to keep her “comfortable.” Since many of you have not had to witness a young, healthy person die from an insidious disease like cancer, allow me to explain what “comfortable” means. When someone is young, their body does not give up. Their vital organs are strong and eager to tackle another 70 to 80 years of life, so they don’t give up easily. As the cancer manifests its malevolent way through the body, it might knock down one or two of those systems, but the rest fight back. That arduous battle results in a long death – a death so painful it is equivalent to torture. Their death can be ruthless.
But this is the nature of some diseases such as cancer. For Leslie, our hope for “comfortable” was that she could sleep. At this point in the progression of the disease, she was exhausted and frail. We could no longer hope for a “comfortable” that would allow her to talk, turn her head, sit up, or even change a diaper. All of these had been taken away weeks before. At this point, any movement – even with massive amounts of pain medication in her system – was still excruciating for her. Her weak, skeletal body was rigid with pain even in a drug-induced sleep.
So, Leslie made the decision to go under “palliative sedation.” She was told that she would be given so much pain medication (the most they could legally give her) that it would “knock her out” and she most likely would never wake again. They said they would withhold everything including food and water until she died. So, either the cancer would kill her or, eventually, she would die of starvation or dehydration. She made the incredibly brave choice to do this – her only legal option at that time.
Two years ago, we hoped that she would only be under this sedation for a day or less, even though we were told it could take more than a week. At this point, Leslie’s body was so weak and riddled with over 50 brain tumors that as soon as we stopped giving her the medication to reduce the swelling in her brain, the disease would progress and she would succumb. Because she was on such high doses of pain medication, the doctors hoped her death would be quick – less than a day. Unfortunately, we were only 48 hours into this horror. Leslie had already awakened twice, screaming in pain, as the tumors swelled. Two more were yet to come.
Two years ago, Leslie had the seizure that haunts my mind every day since. Her body was so emaciated that her jaw appeared to twist up on the side of her head, her eyes appearing to pop out of her skull, and her body so weak that her teeth were a jumbled mess in her mouth by the end. It was truly like a scene out of a horror movie – one I wish I was exaggerating, but unfortunately, I am not.
Two years ago, I learned that a person’s body will spend all of its “energy” keeping vital organs alive. The body stops sending blood and oxygen to “unnecessary” places like arms and legs. So those seemingly-unnecessary appendages start to grey, blacken and die on their own.
Two years ago, I learned that the medical profession is bound to not do anything that might “expedite” death. This can mean giving “too much” pain medication. So even when a patient chooses to go into palliative sedation, if their pain worsens, it is only when they show signs of extreme discomfort that those medications can be increased. And the level of pain that is necessary to wake a patient out of this sedation cannot be fathomed; yet, it happened four times to Leslie. As family members or medical professionals, we had to titrate her medication; the machines only allowed us to push the button every 20 minutes. We would sit there with a timer, awake for days at a time, hitting that button every 20 minutes.
Two years ago, I learned that our laws dictate that we have to let the disease kill at its own barbaric pace – however long that might be. We, as patients, have no other option under the current law. Not one.
We waited almost five full days for Leslie’s body to finally succumb. While under palliative sedation and with the full amount of pain medication allowed by law in her body, she would wake up four times, screaming in pain. She had such high doses of pain medication in her body that the doctors were honestly surprised that the dose itself didn’t kill her. Her organs were that healthy. She was that young and strong. But not only did the dose not kill her; it could not even keep her comfortable enough to stay asleep. So we waited, and Leslie suffered.
Two years ago, I sat and held her hand and waited. Would starvation kill her? Would dehydration kill her? Would the cancer kill her? And I watched cancer take its time, slowly killing her from the tips of her fingers and toes, as they turned grey and died, slowly creeping toward the center. All this time, she was “alive.”
Two years ago today, I knew I would become an advocate for medical aid in dying, and now I can be with Prop 106 on the ballot.
I wish that two years ago when my sister made the choice to take medicines that were supposed to make her fall asleep and not wake up, that instead of being made to receive pain medications at a hospital with an IV, it could have been a choice that allowed her to be at home in her own bed. I wish that instead of just hoping the pain would not become excruciatingly unbearable again and that the disease would kill her quickly, a gentle passing could have been her promise. A guarantee. Her right to control how and when medication was given in her final days.
I wish that two years ago, when Leslie made that choice, her final hours would have been calm, peaceful, and pain-free – she in her own room, curled up under the quilt given to her by cancer survivors. When she held my hand and looked me in the eye and said, “Be happy,” perhaps the peace of mind she felt at that moment – when she thought she was falling asleep for good – would have, in fact, been warranted.
It can be true for others. Whether or not you or your loved ones have that choice is now up to you. Please vote yes. Please don’t force another family to go through what we went through with Leslie two years ago. For you, your family, and for Leslie.
In memory of Leslie Ann Hollis, December 15, 1978 – November 2, 2014