Note: This story deals with a hotly debated issue, sometimes referred to as Death with Dignity, Physician Assisted Death, or Euthanasia. The patient depicted is fictional, and character has been developed to represent a generic patient coming to terms with the choice of living or dying. Any reference to any actual person, living or dead, is entirely coincidental. The subject matter in this post is graphic. I have not sugar-coated the information. If you do not want to feel uncomfortable, if you don’t care to read about uncomfortable truths, please don’t read this article. Lastly, it’s important to know that each state has its own laws in regard to the subject matter being discussed. It’s important to check with your state of residence to find out about current laws in effect in your area. Excellent resources are: www.doh.wa.gov/dwda/faq.htm, and www.compassionwa.org/.
Johnny had a form of cancer that, despite every known treatment, failed to respond, continued to grow, and finally robbed him of any semblance of quality of life.
Pain was excruciating, which he consistently rated at 12 out of 10. He said the pain never stopped. He craved sleep, which was elusive because of the pain. If Johnny could slip into sleep for forty-five minutes, he thought it was heaven. Forty-five minutes without pain. Still, sometimes as he slept, he dreamed of pain. Medication was useless, “…like taking jelly beans,” he said. After time, even intravenous pain medications failed to alleviate his pain. Dosages high enough to help, caused him to sleep. Johnny objected to that, saying “I don’t want to live that way. That’s not living. I may as well be dead.” His family, all intentions good, chastised him, saying, “Don’t talk that way, Johnny! At least you’re alive! You’ve got to fight, Johnny! Fight, fight, fight!” His family researched treatment trials, naturopathic remedies, all in a desperate need to keep Johnny alive.
Johnny had long since lost his appetite. His body was shutting down rapidly, and with that, his sense of hunger and thirst abandoned him. He sucked on ice chips, only to relieve the discomfort of a dry mouth. He slathered moisturizers on his lips, to soothe the cracks that splayed them open and caused them to bleed. A simple smile was painful, and deepened the fissures.
When his mother insisted he eat, “You’ve got to keep your strength up, Johnny! I’ve made you my special chicken soup,” Johnny would turn his head away. “You’ve got to eat something, Johnny! Just a bite,” she’d say. “Here!” as she shoved a spoonful of soup into his mouth, past his broken lips. Just a bite. Followed by vomiting. His body could no longer process oral nutrition. Even the feeding tube, placed when he could no longer take food by mouth, was no longer being used. His bowel had gone to sleep. Every three days, Johnny had a laxative suppository inserted rectally, to help him void the metabolic waste that continued to collect, despite the lack of food. Soon, Johnny became incontinent of bowel and bladder, and he wore adult diapers, too weak and painful to even tolerate being transferred by caregivers to a bedside commode. He had no dignity left.
Johnny was bedbound. The skin on his buttocks, heels, calves, shoulder blades and elbows opened up into weeping bedsores. His lack of hydration and nutrition made healing of those deepening sores impossible. Bone and muscle shone through some of the sores. He required turning by caregivers at least every two hours, because he was too weak to turn himself. Pillows, propped and tucked behind his back, kept him turned to his right, then to his left, then they were removed so he could lie on his back for a while. An air mattress, which alternated pressure automatically, was required to ease the pain of lying on a regular mattress, and to help prevent more bedsores from forming. Bedsores are painful, but just as serious as the pain, bedsores can become infected.
One day, clear-eyed and clear-minded, Johnny woke and announced to his family, “I don’t want to do this anymore. I want to die. I’m already dead, except I’m still breathing. I am done.”
His family was horrified. They objected, telling him he had to “just keep fighting!”
“For what?” he asked. “And for whom?”
Privately, family and friends shared their thoughts and judgments with everyone except Johnny.
“It’s a sin,” said one.
“He’s lost his mind. Why else would he want to die?” questioned another.
“That’s suicide,” decided someone.
“God never lets us suffer more than we can bear,” announced a family member. “Johnny should just buck-up and hang in there. He needs to try harder.”
“Yes!” agreed someone else. “No one knows the appointed hour of our death. Something like that. But Johnny’s playing God, and that’s not right!”
“I don’t know.” Johnny’s mother spoke in a whisper. “It’s not our decision to make, really.”
There was a collective gasp that spread across the room, as people stared, mouths hanging open in horror, at Johnny’s mother’s statement.
“You mean, you’d just sit there and let your son die?!” Johnny’s aunt retorted, her disgust in full display. “A loving mother will do anything to save her son-anything!!”
Silence hung like a pall over the room for a long while, interrupted only by an occasional, uncomfortable clearing of a throat, or a cough. A few feet shuffled in place, and someone grabbed a washcloth and ran it across an already clean countertop. Finally, Johnny’s mother spoke. “A loving mother wouldn’t let her son lie in a bed, knowing he’s suffering with every breath he takes. A loving mother wouldn’t take away her child’s chance to have peace.” Not one person spoke a work. And no one looked Johnny’s mother in the eye. “If Johnny chooses to end his life, I’ll miss him forever. The ache inside of me will never go away. But at least I’ll know he’s no longer in pain. I love him so much that I’d rather live with my own pain, that terrible grief of losing him, than to live with the pain of knowing that his pain never stops, and I didn’t do a thing to help him stop it.”
Everyone had an opinion about what was best for Johnny. But the one, most important thing had been overlooked: Johnny had an opinion, too. And Johnny was in charge. This was about Johnny’s wishes, and Johnny’s wishes alone.
A sister, living across state, heard of Johnny’s plight, through the family grapevine. She drove across a mountain range to be at his bedside to support him. When she arrived and entered Johnny’s room, he smiled more broadly than he had for weeks, despite the pain in his lips that it caused. His only advocate had arrived. Now, he thought, I have a choice.
Johnny had discussed his last wishes, openly, with his sister. He had discussed his last wishes with his consulting and attending physician, months before. His POLST form (Physicians Orders for Life Sustaining Treatment) had been filled out by Johnny, after a lengthy discussion of his terminal status, and his physician had signed it: Do Not Resuscitate. Johnny’s sister had helped him follow each of the required steps in order to use his state’s Death with Dignity provision. It was a process, laden with safe-guards and redundancy, a process that intentionally took time to complete to prevent a patient from making a hasty decision. It was a process that required agreement by a consulting and an attending physician that Johnny’s disease was terminal, that he had no reasonable hope for future quality of life due to symptom-control failure, that he suffered a total loss of human dignity, and that he was not suffering from depression or any mental health issue that would prevent him from making a rational decision. And, it was a process that required not just one, but two written requests for a lethal prescription, to be completed and signed by the patient, witnessed by two individuals, and submitted to the attending physician, with the second request being submitted no less than fifteen days after the initial request. A final, important safeguard was that Johnny must be capable of self-administering this medication. Only then could a lethal prescription be written for that patient’s use in ending his or her life. (This process applicable to the state in which Johnny resided.)
A long discussion ensued, following the arrival of Johnny’s sister. All involved family members were included. It was important to Johnny that his family have the opportunity to ask questions and, hopefully, understand and support the choices he’d made. He knew that not everyone would agree. But, as he pointed out to the dissenting members of his family, “It’s my life to take, ‘ya know. At least I hope you’ll respect my choice, if not agree.” He quieted, with closed eyes, then looked around the room at each person. “I just want you to ask yourselves, ‘Who is it you want me to live for? Me or you?’”
Johnny decided when to take the lethal dose of medication. He told his family, “If you can’t respect this, or if you don’t choose to be here when I go, then I will understand. If that’s the case, then I ask you, please, to leave the room.”
His sister, his mother and a few other family members remained at his bedside. The other family members gave Johnny teary hugs and kisses, told him they loved him, then departed his room to await his passing. As Johnny lifted to his lips the medication that would end his life, and drank it down with a single swallow of water, the lines on his face faded. His expression was solemn, even reverent, and sober. It was the first time in months that Johnny had experienced the hope of relief.
“Thanks for not letting me be alone right now,” he said to those at his deathbed. “Thanks for loving me enough to let me go. It’s been quite a ride.”
Johnny drifted off into unconsciousness 20 minutes later. His heart and breathing stopped within 45 minutes.
And, with that, his suffering ended forever.
© Janet Mitchell, April 2012. Any resemblance to any actual person, living or dead, is entirely coincidental. This is a work of fiction.