Note: I take responsibility for this essay, it reflects my opinion and no one else’s.
My friend Ed Gulley was told in April that he had an inoperable, terminal brain cancer – ten tumors in his brain alone – and that there was no hope of meaningful treatment or recovery, or surgery and chemotherapy might slow the progress of the cancer.
From the beginning, Ed was clear to everyone who would listen that he did not wish to have his life prolonged, that he wished to die quickly, and before he suffered greatly.
He said repeatedly that he did not wish to live or be seen in a severely impaired or crippled way. He wanted to die at home.
He wanted to leave the world when he was still clear and strong, before his children and grandchildren could see him wither away and lose his mind or was a shadow of himself.
In a way, he got his wish. He will die at home, thanks to hospice care.
In a way, he did not get his wish. His wish was taken from him by weak politicians and uncaring bureaucrats.
He has lived for weeks past the point in which he wished to live, or that his life had any meaning. He dreaded subjecting his family to prolonged suffering, and that is precisely what has happened. He dreaded suffering for himself.
Not only has he suffered greatly, but his family has suffered as badly or worse.
What a horror for them to watch this charismatic, powerful and active man wither almost to a skeleton, be put in diapers and medicated heavily so that he could sleep and be free of pain. They desperately wanted him to stay, they never wished to see him like this.
I don’t write editorials here, and I don’t tell other people what to do. But I have to write about this.
Even as Ed has lost consciousness and any kind of coherence, people in his family – quite understandably – are still hoping he will drink and eat so that his life might last a little longer. What, I wonder, will juice do for him now? But it is such a natural thing to feel, how awful for them to be in this position.
Ed is very close to the end now, and almost every single member of his family has now expressed the wish that his suffering and degradation will end so he can die peacefully and the way he wished.
It was bad enough to see how Ed has had to suffer needlessly and pointlessly, mostly because our legislators all live in a different time, when people died quickly and in their own homes. And because there is so much money to be made off of the suffering of the terminally ill.
People don’t die quickly or in their own homes any more, they are kept alive for years by medical technology, doctors without empathy, hospitals and nursing homes that worry much more about lawsuits than people.
This is not a system for our time, it is a system for medieval times.
It must change. For the sake of the living and for the dying. Two states permit what they call “assisted suicide,” it ought to be called the “right to die.”
Our politicians are so busy taking money and covering their hides they have forgotten how to help the vulnerable or do the right thing.
Several weeks ago, Ed clasped my hand and begged me to help him die.
He repeatedly pleaded and begged me to intervene if the people who loved him refused to let him go, or couldn’t let him go, and is so often the response of loving and caring people.
Now, his family is prepared and even eager – for the sake of ending his suffering – to let him go, and still he must linger, unable to awaken, unable to speak, unable to understand what is happening to him. Groaning and reaching out again for empty space.
It is hard for me to even imagine what that must feel like for him inside of that whirlwind, or for me to understand why our society is subjecting him and his family to this legally and medically sanctioned torture and cruelty.
For weeks, his devoted wife Carol has been tearing herself to pieces agonizing over the decisions she has to make alone about how long he should live and how hard she ought to work to keep him alive. Today, she prayed for him to die, and hoped he would drink his juice in almost the same breath.
No spouse should have to make those kinds of choices, day after day, night after night, week after week. Seeing her exhaustion and agony is just as hard as watching Ed’s.
I believe Ed has – had – the right to die when it was clear there was no hope for his treatment and when it became clear he was losing control over his body or mind. In advanced countries, terminally ill people can decide when they want to die. What more sacred right do any of us have than to control our own deaths?
It is not for any politician to tell Ed how and when he must die, or for any doctor to force him to live by 17th century codes and ethics.
If this was hard for me, can any of us imagine what it must have been like and is like for Carol, or for him, or for their children Chad, Jesse, Maggie and Jeremy, and how painful for Ed’s grandchildren to see day after day?
The cancer was bad enough. Ed’s suffering these past months is worse. And unnecessary. And barbaric.
He wanted to die many weeks ago. He begged to die. He had the right to die when he wished under these circumstances. There is no reason for him to hang on and decline day after day, to have to beg friends to help him die, with no legal or moral way for them to do it.
I do not have the right to kill Ed, but he does have the right to die.
My own father had a different vision of death than Ed. He wished to be kept alive by any means possible for as long as possible, even as he neared 90 and was almost completely incapacitated. That was his wish and his right.
It is not mine, it was not Ed’s. It is not the wish of Ed’s family.
Carol wrote today on her blog that she has had enough. Ed’s family, as supportive as any family I have ever seen, has had enough. And most importantly, they have had enough of his suffering and disintegration.
“Enough,” she wrote, perhaps the most powerful word she has chosen during this ordeal.
I’ve been careful not to write about Ed in an angry voice, nobody needs more angry voices in our culture. But I am angry, I have felt anger rising over the past few days as Ed’s suffering has turned into a nightmare for everyone.
If I can’t honor his wishes, I can at least speak for him.
Isn’t a life cut short by cancer enough of a trial for a person and his or her family. Must everyone go through a second prolonged Hell?
I am sorry beyond words that I failed in my promise to help him die in the way he wished. I am not God.
I am not a political person or a joiner, but there is a Right To Die movement, and I hope and pray it succeeds. They will surely get a donation from me.
Our world really gives me or Ed or you any way to die in a decent and humane way. Ed had the right to die as he wished, and we as a society have no right to steal that from him.
My father was on the same page as you in this essay. After experiencing failing health, he told my mom and me that he would choose his own exit. . . that he refused to be at the mercy of the medical profession or lose his dignity. And at the age of 82, he finally did choose his own exit.
Thanks Deb, he sounds like someone I would much enjoy having known.
Amen!! Thank you for your post.
And just across the border in Vermont, Ed would probably have gotten his wish.
Yes…we should have that right. I think we are kinder to animals…we would never let an animal suffer like that, but we let it happen to people.
Amen to you. Ed’s wish is my wish. I am not ready yet, but when the time comes I hope that the laws will have changed. Why can we treat our pets better than we can treat our loved ones. My father had Parkinson’s and lingered in a coma state for FOUR years. It was awful. I found it hard to go visit him. My mother sat by his bed in the nursing home every single day. The ordeal killed her, too. It is barbaric.
Jon, I wholeheartedly agree with everything you’ve said. In Alberta we have new legislation concerning what the politicians have decided to call “medically assisted death”. It’s a good start but, as expected, doesn’t go far enough to help people. It’s as if the politicians agree that it’s a good idea, but nobody wants to be the first to take REAL steps in addressing the issue. If someone euthanizes their dog to end it’s suffering, it’s called mercy, but if you do the same for a human it’s called murder. It makes no sense and it’s tragic.
I fully agree that a person should have the right to choose to die a humane death. Plus they should have the right to dictate that in a living will before they become incapacitated. Their wishes should be legally required to be honored.
To allow a dog to suffer like this in the State of Hawaii is considered a felony offense. Should forcing a human to suffer a prolonged dying procedure against their wishes be less of a felony than for a dog?
My own mother, confined to a bed and in diapers, begged to die for 10 months, while the doctors refused to consider her wishes. It was a most horrible process to witness.
My poor mother suffered so and I bear such guilt as I couldn’t do anything to make it better. I certainly wish for a right to die with dignity for my self.
I always wonder why we, as a culture, see and understand this compassionate act when we talk about the members of our family that have fur or feathers, but not with the human ones.
We need both the “right to die” and more conversation about death within our families. When families can’t talk about or accept the coming death of a loved one, then assisted death only causes more heartache and pain for all but the dying individual.
We have to learn to let each other go. My friend, a nurse in long term care, tells me she spends much of her time helping families to “let go”. It’s a very difficult job, and she says most families are very resistant to this. They want the doctors to “do everything” to keep loved ones alive. This is understandable, given our reluctance as a society to deal with the reality of death.
Thank you, Jon for saying what so many of us are feeling. I have often said, why is it that we can show our pets mercy through euthanasia, but, not our fellow human beings?
Asa retired health care professional, I’ve seen enough prolonged dying to know that this is not the death I want for myself. My family knows that I don’t want to be kept alive by means of tubes and ventilators.I don’t think most legislators understand the emotional and financial toll that these prolonged deaths take on families. It’s time for some sensible, compassionate laws that address the right to die when one chooses.
Rethinking my previous comment, I do not wish to imply any judgement whatsoever on this particular family. They are in enough pain. a similar situation unfolded in my own family and it was not until it was over that my eyes were opened. If we were all able to talk more easily about this, that might help to prevent families from being in this situation, where they are so torn by their conflicting desires, an understandable wish for a little more time with their loved one and also their wish for their loved one not to suffer.
I blame the Christian faith a bit for all this, too. While it can provide so much comfort, it can also encourage magical thinking, a hope for miraculous healings. I held on to that hope myself, and was shocked when some nurses asked me, with deep compassion, whether I actually understood that my father was truly going to die.
I completely understand where you are coming from, Jon. I am fortunate enough to live in one of the 2 states in which you have the right to choose when to end the pain. I don’t think it even makes the news here anymore; it just is. My husband and I have discussed this topic at some length and understand each other’s wishes.
At times it’s been difficult to read about what Carol and Ed are going through, but I’m very glad you’ve written about it. Dying with dignity should be every person’s right.
Having witnessed the painful death of 4 loved
ones thru end stage cancer, I agree with
you. I have Parkenson’s. I’ve made a few
alternative plans. So few people have notice
and can prepare. I’m fortunate. Bless Ed and
his family and caregivers!
There’s nothing much I can say that has not already been said by Jon and others, but I am also angry that the right to choose our own lives and deaths has been taken away from us by politicians. To make people so strong and amazing as Ed and Carol suffer so badly is criminal!
To take charge of her dying, my 95 yr old grandmother stopped eating and drinking. Not painless but at her advanced old age her body shut down quickly.
Jon,
You hit this issue dead on. I’ve seen it 3 times to people in my personal life to the tune of about $500,000 in an egregious attempt to make more profits. When Assisted living facilities are charging $8,000 a month for sub humane treatment and there isn’t a legislator alive who has enough humanity to regulate that, that’s all I need to know. Not to diminish Mr Gulley’s life or wishes, but follow the money in this country and you usually get your answer.
Jon, thank you for addressing this issue. My husband kept telling me he wanted to die and it broke my heart. It was the longest months of my life watching him fade and feeling helpless. I hope to God one day there will be laws in place to let those so sick leave this earth before losing all dignity. It is something the remaining family never forgets and is indeed a cruel thing for both the sick and those around him. Thank you, Jon.
Jon,
Thank you for this essay.
I read in a previous essay that you were kept up at night bothered by your inability to honor Ed’s request that you write a book about him and his death. This and previous comments and photos along with Carols blog have done I think, what Ed requested. I only wish all of America could read along. The journey has been at times uplifting and heart rending.
Your plea for more merciful laws must also come with a cultural shift. We must face the reality that along with life comes death- and that we have the means to make the passage merciful and dignified.
I am reminded of euthanizing my last dog and the different world view of myself and my partner – while I cried with grief, my friend who had been raised Buddhist took the dogs paws smiled and with real joy said “goodbye, no more pain now, peace, I am happy for you”.
Would that we could treat our human family with such joy, dignity and grace at the time of their passage.
Thank you again for your essays.
As a Canadian, I have the option of a medically assisted death, should I become terminal. This sounds good, but it is a choice made acceptable only by the alternative. It’s still a hard path to walk, for the patient and for
all who love him.
I wish peace for you. Hopefully Ed is well on his way to seeing and feeling the end of his suffering.
So much there to agree with. Like the other folks that have commented I have had my own experiences with lingering deaths, suicide, and assisted suicide. Personally, I believe there are different lessons and plans for different people and try to find the gift in every passing. However, I’m happy to live in California where there is a choice but it’s still kept a bit “under the covers” with doctors fearing for the loss of their license. Praying that in the bigger picture everyone of the people that love Ed Gulley realize their gift sooner than later. You’re a grand person to voice both your own thoughts and those that mirror yours. A platform for love and honesty. Blessings, Linda
I am 75 and not terminally ill but wish to end my life at 80. I am mentally sound but see no need to put my life in someone else’s hands or hope I get a terminal illness by then. Life is terminal.
I agree, Jon. I watched my grandma at 90 who couldn’t speak was all there but could not move keep pulling out those tubes of life very difficultly every single night until she did die. She had told her sons she wanted a quick death over the years, and when she had that huge stroke and could do very little no one believe them. She took care of it herself, but to get the tubes out it took her frozen body so long! It was her wish and she finally got it. But I cannot imagine how much pain it cost her.
My mom was diagnosed with ALS when I was 12 years old. It’s a horrible illness as everyone knows. I remember the day my dad had to take her to the nursing home, kicking and screaming that she wanted to die. She withered away 7 years later. I hope and pray that my loved ones never have to see me wither away. We wouldn’t let our pets suffer in pain yet our own family members suffer.
to you Jon and those who commented speak of how i feel as well.
what Ed and his family are suffering is beyond heartbreaking.
what makes me angry is knowing that quite possaby those with money, those in office who have had loved ones with terminal illness have had thier suffering ended much sooner. those with money and power have the means to see that thier loved ones don’t suffer so why should they care about anyone else. that my own personal opinion, i don’t speak for anyone else.
I’m hopeful that Ed’s suffering will end soon. I pray that the memories of these past few weeks of Ed’s will not linger long with his family and friends but will be quickly replaced with the healing memories of Ed’s true self.
I’m so glad I live in California which has right to die laws in place. I’m only interested in living if it’s a life I define as good. I’ve told my family that because of the strong genetic possibility I dementia I may have to leave the party a little early. I may not be there for the last beautiful waltz but I refuse to risk still being around when the music has stopped and dirty glasses litter the tabletood
Every day I check your blog to see if Ed has passed. As time went on, I realized that Ed wasn’t going to get the quick death that he wanted because his family wasn’t on board with his wishes. We need to learn how to tell our loved ones that we want a quick death over what has become the standard, long drawn out death. No one gets out alive.
I hope Ed’s story is read by a lot of people and gets conversations started on how we all wish to die.
Thanks Holly, the family has come around. It’s a hard thing for them to do, but they did it. Everyone has to do it in their own time and way.