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from our blog: living with dying |
Experiences of a Dying Patient
Posted by Guest Blogger on October 14, 2011

Rick and Nora
Nora Miller's husband was diagnosed with terminal lung cancer in 1999, and died peacefully after exercising his right to Death with Dignity under Oregon's law. Her mother and sister were not so fortunate.
These contrasting experiences have motivated Nora to do what she can to promote the enactment of Death with Dignity laws in all states, to encourage medical personnel to learn about and embrace the benefits of the law for their patients, and to challenge misrepresentations of the facts about Death with Dignity wherever possible.
Oh laddie, are you going just now?
Can't you stay a while longer?
Sit and we will share the last golden drop
of the wee dram that is you and me.
Caoineadh cu Chulainn
The experience of a dying patient has a hundred different angles. Which angle tells the story?
From his point of view, my dying husband faced the end of all time. From the first day, we knew that his lung cancer was inoperable, untreatable, and already fatal, that the suggested chemo could only, possibly, slow the process a little. Each night my husband went to sleep knowing that his nights were numbered, that the next day would be one fewer of the heartbreakingly few remaining. He didn't have the option of "fighting," of "beating the odds" or "winning the battle." Every door he had imagined still open to him, the nursery business he had planned, the trip to Alaska he'd always put off for another year, the joy of seeing his only son graduate from college, get married and have a son of his own, the happy retirement spent with grandchildren, all slammed shut in a single moment. I think this awareness drove his decision to use Oregon's Death with Dignity law when the time came.
From my point of view, my dying husband required my unequivocal attention and support as he made his way towards that last day, when he would stop and I would go on alone. Each new symptom we encountered demanded flexibility, energy, and sometimes even bravery, to manage. As fatigue slowed his steps and pain made it impossible to climb steps, we learned to get around with a wheelchair. As chemotherapy tainted his sense of taste, we zeroed in on the few foods that somehow retained their appeal—scrambled eggs, chili mac, green tea with honey. As he lost interest in the things of this life, we arranged a cozy retreat to occupy his time, a double recliner where we could sit close together, a baby monitor so he could converse with me in the kitchen, the TV tuned more or less continuously to the Western channel so he could enjoy old movies. He loved the uncomplicated stories of struggle and triumph that end with the hero disappearing into that clichéd sunset. I think he saw those heroes as a role model—they left when it made sense to leave, on their terms, with dignity and wry smile for the stupid, inevitable tragedy of it all.
From the point of view of his oncologist, my dying husband was a human being in an untenable position. From many different corners, we receive the message that we should fight disease and death with everything we've got. But eventually, that's no longer possible. When it became clear that the chemotherapy would not stop or even slow the spread of tumors in his increasingly frail body, his oncologist told him it was time to "stop beating yourself up." I credit that doctor with great wisdom and compassion in a profession that tries so hard to pretend that death is somehow unnatural or "treatable."
My husband wrote out his request for the lethal prescription with his own hand, a tremulous and unruly scrawl that I translated for the doctor: "I would like you to write me a prescription for the medication that will end my life." Oregon's act had been in effect less than two years and his doctor had never received a request before, but he readily agreed, having come to know my husband and recognizing what this option meant for him. I filled the prescription and placed the medication in my husband's hands. Only he could make the decision whether and when to use it.
As it turned out, "when" came barely a week later. We were watching a movie with my son and his fiancé. My husband needed to go to bathroom, but the growing tumor in his brain made it hard to speak the words, harder still to walk the ten feet to the toilet, and impossible to stand while going. I stayed with him to keep him from falling over and he hated the embarrassment he felt. Tears of frustration and sadness ran down his face. I said whatever I could think of to assure him that I considered helping him a privilege and an act of love, even in this seemingly undignified situation. This is what "in sickness and in health" is all about, I reminded him. Of course, we both knew the next line in that vow: "til death do us part."
Back on the recliner, he turned to me with a focus he had lacked in recent days, and said, "I just want to know you will be all right." I took his hands in mine and looked him in the eye. "I will never be 'all right' without you," I said, "but I will be all right." He smiled. "Okay, then, I think it's time. Why don't you get the applesauce?" He lay back, more relaxed and calm than I'd seen him in weeks.
I tested his decision, not just once, or twice, but a few times. "Are you sure? You still have time. You can decide in the morning. Think about it for a few more days." He beamed at me, at our son, and said he was sure. He had everyone he wanted to be with right here, and he was ready to go.
We sat around his bed, me, my son, and my son's fiancé, whom we loved like a daughter. My husband reminded me that he wanted us to spread his ashes at the foot of a giant redwood near the ocean. I had my arm around him, my son held one of his hands, our soon-to-be daughter held the other. After months of decline, fatigue, and anxiety, he seemed jovial, even radiant. He scooped up the applesauce with the lethal medication, making a face at the bitter taste, but not stopping until it was gone. By the time he swallowed the last spoonful, he was already unconscious. I took the bowl from his hand, and we lowered the head of the bed. I lay beside him and talked quietly, saying my last goodbye to the man I had loved since I was 18. Within an hour, he took his last breath.
We who shared his last moment took our next breath and moved on without him, as the living must. But our moving on was that much easier because the Oregon law allowed us to share his last moments and say our goodbyes while he was lucid and present, knowing he died on his own terms. My heart goes out to families who do not have this option, who must sit for hours or days or weeks as death takes their loved ones a centimeter at a time. My mother died that way, her body hanging on long after her mind was gone, groggy from pain medication and hypoxia, unable to recognize her own daughters at her bedside. My last memories of her are strongly colored by her pain and delirium, so different from my last memories of my husband.
I'll be forever grateful to him for choosing to trade a few days or weeks of life for the gift of that calm and loving last moment together.
And I'll be forever grateful to the people of Oregon for making it possible. I encourage you to work to enact a law like Oregon's in your state. Everyone deserves the option of a dignified death in a manner of their own choosing.
Defend dignity. Take action.
You are the key to ensuring well-crafted Death with Dignity laws for all Americans. With your financial and volunteer help, the Death with Dignity National Center, a 501(c)(3), non-partisan, non-profit organization, has been the leading advocate in the death with dignity movement. Member contributions helped us pass a new Death with Dignity law in Washington, defend the Oregon law, and provide education and outreach programs for the vitality of the death with dignity movement.









Comments
Thats the way I would like to leave this world, with my luv ones next to me. No more pain, no more suffering.
I watched my mother die a terrible and painful death from lung cancer this past June. Nothing hospice tried helped alleviate the suffering. I do believe in death with dignity and wish it had been an option for her.
I watched my father and mother die painfully from cancer 4 months apart. I have had breast cancer 3 times and now they found nodules on my spine. I firmly believe in Death with Dignity laws being past.
Both my parents died a year and a day apart from each other. After my dad died, my mom begged me to take her life. And I couldn't do it. This might sound awful and pretentious, but my religious beliefs wouldn't allow it. I prayed for miracles and thankfully, many prayers were answered and she was granted her wish to be with my dad...
Thank you, all, for sharing your thoughts and stories. Even from this small sample of comments it's easy to see dying is an intimate and personal experience. We all approach death differently, and our laws should allow people in all states the ability to decide what's best for them when facing a terminal illness.
An important piece of Death with Dignity Acts is they're voluntary for all involved--patient, doctor and pharmacist. Each person decides for themselves to participate in the process, and ultimately only the patient and no one else decides when or whether to take the life-ending medication.
Let's keep the discussion going!
Melissa
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Melissa Barber
Electronic Communications Specialist
Death with Dignity National Center
I am a firm believer in Death with Dignity and wish that my mother could have benefited from that instead of wasting away from a painful bout with cancer and dying 9 weeks after the diagnosis. My brother, sister and I were left emotionally shattered and me not having been able to be there (I lived too far away) was even more shattered to lose her and not be there.
If she could have chosen her own time and when, then I could have been there as well and we as the family would have been better prepared for her death, instead of the aching void that it has left in our hearts and lives.
Should anyone else in my family ever suffer from something so painful or terminal, I am going to recommend death with dignity, although there are not many states that have laws like this. I think all 50 states should have laws similar to Oregon's. Thank you Oregon for being the groundbreaker in this momentous law.
People should have every bit of a right to how they die, just as people have the right to choose how to give birth.
Sincerely,
Melissa Kalson
'Cancer' seems to run near or at the tip of the list as reason to be able to choose, but I'd like to mention the 'dignity' part of all this.
My Mom had Alzheimers, and her doctor told us she was one of the minority in that she knew she had Alzheimers, and understood all that that diagnosis implies. She had dealt with caring for her own mother through years of dementia, and was very aware of her own probable future. She dreaded the slow erosion of her own personality and mental acuity, was horrified with the knowlege she would lose control over her mind, body and, above all, dignity.
As it turned out, her mind failed, but her body did not, and she was on Hospice for over 6 years until she passed away. While she could still talk with us in a reasonably coherent way, she expressed her regret and sorrow that she could not choose to say goodby, and then leave with freedom and dignity at a time of her own choosing. She would have opted for quality over quantity, and we would have agreed with and honored her for her decision.
WHY can we praise and commend people for releasing well loved pets with mercy and love when we can see life becomes too painful for them... but we are not allowed to seek the same mercy for ourselves?
My grandma had terminal cancer and the last couple weeks of her life were the most painful for her. Luckily her decision to die at home was honored by the family. The hospice nurse we had come in was very understandable. Anyway my grandmas pain was so severe that the doctor increased her morphine even though it would compromise her respiratory system. I believe that a person as a right to choose how they live and how they die. Lawmakers need to stay out of decisions on how a person lives and dies!!!!!
Nora,
You have given us a gift by sharing your love story. Clearly, you and your husband were a strong team and now by sharing the story you two created together other families will have accurate information to help them determine the choices they will make.
It's an honor to learn and tweet with you.
Sincerely,
Lisa
Twitter~Practical Wisdom
Well i cant stop crying..