I would need the room for a week. That’s what I told the front-desk
clerk at the Extended Residence Stay America Whatever when I checked in
that Sunday night.
At least a week, I said, maybe longer.
My mother had already been in the hospital across the street for
nearly a week by the time I arrived in Tucson. She was no stranger to
hospitals over the last few years. She’d wake up to find that her
breathing was more difficult, or that some new infection was exploiting
her weakened immune system, or that some new debilitating side effect
from the powerful drugs that were keeping her alive had emerged. My
stepfather would rush her to a hospital, and she would come home a few
days later having accepted some previously feared
development—being hooked up to an oxygen tank, having to use a
walker—as her “new normal.”
The plan: I would stay in Tucson for three or four days and help my
stepfather and aunt look after my mother. Then my brother Billy
would fly in from Chicago, take over the helping-out duties and my
hotel room, and we’d figure out what to do next.
Before going to the hotel on Sunday night, I got to play cards with
my mother and read with her, and things were looking less grim than
they had when my aunt called me in Seattle earlier that day and told me
to get on an airplane. My mother wasn’t getting better, but she wasn’t
getting worse.
My mother had pulmonary fibrosis, a degenerative lung condition, and
we knew enough about the disease to know that dramatic turns for the
worse were a possibility. She knew that pulmonary fibrosis would
eventually end her life, and she’d done some research into just what
sort of an end she could expect. It wasn’t going to be pretty. Her
lungs were gradually filling with scar tissue. She would, when her time
came, slowly and painfully suffocate to death over a period of hours or
days. But eight weeks before she wound up in a sprawling, dung-colored
hospital in sprawling, dung-colored Tucson, my mother’s doctors had
given her two to five years to live.
She’d recently marked the five-year anniversary of her diagnosis, an
anniversary very few pulmonary fibrosis sufferers live to celebrate.
She was terrified, as her fifth anniversary approached, that she
wouldn’t “beat five.” But her spirits lifted when her anniversary came
and went, and her doctors gave her years, not months or weeks, to live.
That’s when she decided to go on this trip with her husband, driving to
California and New Mexico and Arizona. She was looking forward to
attending her first grandson’s high-school graduation, her grade-school
class’s 50th reunion, a Broadway show.
The Seattle Post-Intelligencer‘s Joel Connelly has written
several columns—and several thousand words—blasting
Initiative 1000, the November ballot measure in Washington State that
would make it legal for physicians to prescribe lethal doses of
medication to terminally ill patients. Connelly doesn’t like the
measure because he believes the purpose of a “democratic society” is to
“safeguard and enhance life, especially among the youngest, the
weakest, and the suffering”; because he worries that the movement might
next “seek to expand conditions for the legal ending of life, as has
been done in the Netherlands”; and because out-of-state money has been
collected by supporters of Initiative 1000.
“Should Washington be a launching pad for a movement that seeks to
transform a crime into a ‘medical treatment’?” Connelly thunders.
KUOW has been covering the debate over I-1000, too. In a recent
report, two widows were interviewed about the deaths of their husbands.
After watching their spouses die, one widow planned to vote for I-1000
and the other planned to vote against it.
The woman voting for the initiative—whose husband died of
brain cancer—wants terminally ill people to have a choice at the
end of their lives, a choice to end their suffering and hasten an
inevitable, rapidly approaching death. The woman voting against the
initiative wants—well, she wants what we all want. She wants to
have a good death, a peaceful death, a death like the one her husband,
um, enjoyed.
“I would like to be enveloped in the love of a good caregiver I
would get,” she says.
Don’t we all want that kind of death? Wouldn’t it be wonderful if
each of us could enjoy a Hallmark death? Wouldn’t it be ideal if each
of us passed from this life into the next—aka “the
void”—enveloped in the love of good caregivers and under the care
of competent “pain management” professionals? But not everyone is so
lucky. Some of us have to endure deaths that are gruesome and
protracted and excruciatingly painful, deaths that involve pain that
cannot be “managed,” deaths that our loving caregivers can only stand
helplessly by and witness.
“You don’t know how you’re going to feel at the end of your life,”
the widow planning to vote for I-1000 says. “I want to have the choices
available to me.”
Choices.
Exactly. If I-1000 is approved by Washington State voters, the widow
opposed to the initiative will not be compelled to end her life with
the assistance of a physician. She can choose pain meds and the love of
caregivers and die a “natural” death. (What’s so “natural” about pain
management anyway?) But if I-1000 is rejected, the widow who plans to
vote in favor of it will not have the same choice. She will not be able
to choose to end her life, and end her suffering, if the pain becomes
too much for her to bear.
That’s what the debate about I-1000 is really all about: your body,
your death, your choice. The passage of I-1000 doesn’t impose anything
on terminally ill people who reject physician-assisted suicide for
religious reasons. But the rejection of I-1000 imposes the values of
others on terminally ill people who would like to make that choice for
themselves, who should have a right to make that choice for
themselves.
And, I’m sorry, but there’s nothing about physician-assisted
suicide—or, as it should be called, end-of-life pain
management—that precludes the presence of loving caregivers. You
can be surrounded by love and have access to the best medical care
available and still conclude—reasonably and rationally—that
you would rather not spend the last few moments of your life in
blinding pain or gasping for breath or pumped full of just enough
morphine to (hopefully) deaden your pain without deadening you.
On Monday morning, after eliminating all other possibilities (a
virus, pneumonia, some rare desert fungus), a doctor pulled me and my
stepfather out of my mother’s room. They were out of options. Nothing
more could be done. Her battered lungs were failing; one had a widening
hole in it. Amazingly, the doctor didn’t say, “It’s over, this is it.”
He laid out the facts and we stared at him dumbly for that
world-without-end moment, and then one of us—my stepfather, me, I
don’t remember—finally said, “So this is it?”
The doctor nodded.
We somehow managed to hold it together, me and my stepfather. We
didn’t have the luxury of breaking down. He stepped out of the
intensive-care unit to tell my sister and my aunt the news, to confer
about how we would break the news to my mother, and to call a priest. I
stepped back into her room to sit with her, to hold her hand. I didn’t
tell her what I knew; it wasn’t my place. I would sit with her and wait
for my stepfather to return.
Suddenly, the doctor was at the door to my mother’s room again. He
waved me out into the hall. He needed a medical directive. Immediately.
Her vital signs were tanking. If we were going to put a tube in her,
and put her on machines that could breathe for her, it had to be now.
Right now. So it fell to me to walk back into my mother’s room, tell
her she was going to die, and lay out her rather limited options. She
could be put under and put on machines and live for a day or two in a
coma, long enough for her other two children to get down to Tucson and
say their good-byes, which she wouldn’t be able to hear. Or she could
live for maybe another six hours if she continued to wear an oxygen
mask that forced air into her lungs with so much force it made her
whole body convulse. Or she could take the mask off and suffocate to
death. Slowly, painfully, over an hour or two.
It was her choice.
“No mask,” she said, “no pain.”
Her nurse promised to give her enough morphine to deaden any pain
she might feel after my mother made her choice: She would take off the
mask. She would go now. I told the doctor and then ran sobbing—no
longer trying to hold it together—into the waiting room to get my
stepfather, my sister, and my aunt. Things were worse than they were
five minutes ago. Get in here, I said, get in here now.
We said our good-byes—doesn’t that sound dignified? But her
mask was still on and her body still convulsing. Good-byes reduced my
affable stepfather to wracking sobs; good-byes sent me and my sister
falling to the floor beside our mother’s deathbed. We held a phone up
to my mother’s ear so she could hear one of my brothers shout his
good-bye over the whir and thump of the oxygen machine, while we tried
desperately to get my other brother on the phone.
In the midst of all of this, a hospital orderly breezed into my
mother’s room and handed her a menu to fill out for tomorrow’s meals.
It was a staggering blow, this sudden and unwelcome reminder that
tomorrow was coming and my mother wouldn’t be part of it, and it felt
like we had all just been punched in the stomach. After a
this-can’t-be-
happening pause, my stepfather rose from his chair
and barked so loudly at the orderly that she dropped the menu, which
fluttered to the floor under my mother’s bed.
Then my mother was ready. The mask came off, she held tight to our
hands, and the morphine went in. Her grip slackened. My mother was
still alive, in there somewhere, beyond our reach. Was she in pain? We
don’t know. She couldn’t talk to us now, or focus on us, but she was
awake, her eyes open. She gasped for breath, again and again, and we
sat there, traumatized, waiting for her heart to stop, waiting for the
very first sound that I had ever heard—my mother’s heart
beating—to go silent.
People must accept death at “the hour chosen by God,” according to
Pope Benedict XVI, leader of the Catholic Church, which is pouring
money into the campaign against I-1000.
The hour chosen by God? What does that even mean? Without the
intervention of man—and medical science—my mother would
have died years earlier. And at the end, even without assisted suicide
as an option, my mother had to make her choices. Two hours with the
mask off? Six with the mask on? Another two days hooked up to machines?
Once things were hopeless, she chose the quickest, if not the easiest,
exit. Mask off, two hours. That was my mother’s choice, not God’s.
Did my mother commit suicide? I wonder what the pope might say.
I know what my mother would say: The same church leaders who can’t
manage to keep priests from raping children aren’t entitled to
micromanage the final moments of our lives.
If religious people believe assisted suicide is wrong, they have a
right to say so. Same for gay marriage and abortion. They oppose them
for religious reasons, but it’s somehow not enough for them to deny
those things to themselves. They have to rush into your intimate life
and deny them to you, too—deny you control over your own
reproductive organs, deny you the spouse of your choosing, condemn you
to pain (or the terror of it) at the end of your life.
The proper response to religious opposition to choice or love or
death can be reduced to a series of bumper stickers: Don’t approve of
abortion? Don’t have one. Don’t approve of gay marriage? Don’t have
one. Don’t approve of physician-assisted suicide? For Christ’s sake,
don’t have one. But don’t tell me I can’t have one—each
one—because it offends your God.
Fuck your God.
They gave my mother some more morphine—not enough to kill her,
only enough to deaden the pain while her lungs finished her off. Still:
Was she in pain? I’m haunted by the thought that she could have
been in pain—the pain we promised to spare her—but had no
way to tell us, no way to ask for more painkillers, no way to let us
know that she needed us, that she needed our help, that she needed us
to do whatever we could to hasten her inevitable death and end her
suffering.
I don’t know what my mother would have done if she had had the
choice to take a few pills and skip the last two hours of her life. She
was a practicing Catholic. But she was also pro-choice, pro–gay
marriage, pro–ordaining women. If she could’ve committed suicide,
by her own hand, with a doctor “assisting” only by providing her with
drugs and allowing her to administer them to herself, after saying her
good-byes, I suspect she would have done so, so great was her fear of
dying in pain.
I do know that she should have been allowed to make that choice for
herself. It’s not a choice that Joel Connelly—or the Catholic
Church—had a right to make for her.
I also know that, if my mother needed my help, I would’ve held a
glass of water to her lips, so that she could swallow the pills that
would’ve spared her those two hours of agony.
And that shouldn’t be a crime.
My condolences, Dan, to you and your family. May the memory of your mother be for a blessing.
I stand with you on I-1000 and it *will* get my vote.
So sorry Dan. Powerful words.
Dear Dan, I’m so sorry. Your stories about your mother have given me some sense of the love you and your family have for each other. Thank you for the gift of sharing her spirit with us over the years. I also have a similar story and wish a different choice had been possible.
With tears streaming down my face, I am writing this comment.
Dan, you and your family have my deepest sincerest empathy. My beloved Grandmother died a few years ago of pancreatic cancer. Years before her diagnosis, Grandma let me know know that she had a cache of “medicine” that would end her life if the pain of living became too much. She was terrified of being “tied to machines” that forced her body to go on living when she was ready to die. Grandma felt that NO ONE had a right to tell her how to live her life or how to die. She was all for doctor assisted suicide and did not understand why anyone would be aganist it.
Even though I am crying like a baby right now, this article reminded me of just how much I loved my Grandma and how important it is that we all have a choice in our own lives and death. Thank you, Dan.
There’s a church at the end of my block who had a “No I-1000” sign in the corner of it’s lawn. because of you i knew what it was. i then stole that sign and used the picket to put an Obama sign on my lawn.
There’s a difference between medically prolonging death and suicide. Suicide is the wrong word. Bodies as well as minds have a certain wisdom, and they should be allowed to shut down when it is time–but that’s the rub isn’t it–when is it time?
What if some enabling system evolved that wafted us off before it was our time. It would be easier than getting sick and dying, wouldn’t it? Just lying down and falling to sleep…but I want to rage against the dying of the light and see it go. I don’t care much about dignity–being born wasn’t dignified, sex isn’t dignified, giving birth wasn’t dignified, and I don’t expect death will be dignified, either. But fuck dignity. I want to be there. And I don’t want people palliating me out of my own death out of kindness–or worse motives.
I am a long time reader/fan and would, like the many others, offer my condolences to you and your family.
Assisted suicide for lack of a better term–and we need one) should not be construed as a form of eugenics. Remember people, eugenics tends not to involve personal choice. Geez!
And, all that business about assisted suicide being a profit-driven option is just ridiculous. What about the profit to be gained by keeping someone alive and in an expensive hopsital room/on expensive machines and therapies? (Before anyone freaks out and thinks I’m suggesting that we should deny such treatment options, I’m not. I’m talking about the right to choose.)
I can’t say anything that hasn’t been said at this point so I’ll reiterate. You can’t know what aging will do to you or your loved ones. You can’t assume that your body and mind will be intact. Yet, In this youth-obsessed, consumer-driven, celebrity-saturated culture, we see less and less free range aging. I wonder to what degree this informs people’s opinions about I-1000.
This was a beautifully painful, emotive piece, Dan. You and your family are in my prayers and I want you to know that I am a Christian that agrees with the majority of your points (except for the part where you said to fuck my God but that’s beyond the point)
It is illogical to oppose assisted suicide and focus on prolonging the life of those that have already run out of life. Your article reminded me of Swift’s “Gulliver’s Travels”, specifically his travel to Laputa where he met the race of the immortals that were unhappy because they couldn’t die.
Medical advances are meant for the benefit of the people–a peaceful, pain reduced death should be one of those benefits.
Dan – please accept my heart-felt sympathy. Your mother was a wonderful woman to have brought up a son like you.
Thank you, Dan. I am an ordained minister, a graduate of a concervative (Southern Baptist) seminary, but I absolutely agree with you on this one, and on many other issues as well. Keep it up. And may your mom rest in peace.
I’m so very sorry for your loss.
Thank you Dan for your story, I know I can’t relate because I fortunately have not yet had to see either of my parents die, but I have to say that I’m with Jeffery and Elise Golin.
There are terminally ill adults who are capable of making the choice to live or die, who are aware of their surroundings, who can decide if they would like to go quickly. But what about those who are more terrified of dying than of pain? You say that the widow who doesn’t want to opt for assisted suicide won’t have to. Maybe not now. But what if one day an insurance company or hospital can decide that it’s better to give her a lethal dose of morphine than spend money on life support, and she would rather have a few more days with her caregivers?
What starts as people wanting to end their lives at the hour of their choosing rather than the hour of God’s choosing may end at pepople having their lives ended at the hour of the state’s choosing.
Right now, I think that I don’t want for machines to keep me alive. But I don’t know how I’ll feel once I’m there. And I’m afraid that if euthanasia becomes legalized, one day I won’t have the choice to be hooked to the machines if I want to.
Good article.
The fear of de slippery slope of euthanasia sofar proved to be wrong here in the Netherlands. On the countrary, in the last year a shift to palliative sedation has become visible. I do not wonder wether that’s a result of an increasingly christian government. I know it is. I despise their role in de euthanasia debate, which they are blocking by every means.
A rather wierd difference between here and the other side of the ocean seems te be that we can have physicians perform euthanasia. If done according to the rules, there will be no prosecution.
Assisting in suicide however, is prohibited by law and that is what I get from Dan’s article is being asked for.
Yeah, I do think people should be able to choose their death. I even think it is a VERY important right.
I watched my mother and my son die painful deaths. She was 87. He was 11. She was in a nursing home with a head nurse who asked us if we wanted to “let her go”. We said yes. The nurse gave her “something for her pain” and she drifted off, finally ending her labored breathing and moaning.
My son was in an ICU and got minimal pain meds, because the ICU doctors were determined to save him, even though his immune system had shut down and he had an overwhelming blood infection that all their antibiotics weren’t touching.
I had to watch as they “brought him back” time after time when his heart and breathing stopped. I knew he was dead. I had “felt” him leave when he died the first time his heart stopped. When I think of his death, I remember the horror of watching this and it’s like I’m there again, even though it was over two years ago.
I’m not a religious person and I’m very angry that religious people want to force the rest of us to live by their beliefs. My mother asked me to let her go many times before she died. She was tired, in pain and ready to stop fighting. She was a Christian and believed that she was going to an afterlife where she’d be with all the people she loved, who had died before her.
If we can’t choose the time and circumstances of our deaths, we’re not free. If we don’t own our own bodies, then someone else does – the state or the church. That’s just not right in a country that claims to be “the land of the free”.
Lill
My condolences to your family, and thank you for having the courage to share this. My grandfather is suffering the same now and while I am grateful for every day we have now, I also hope that he will be well enough to be able to stay home until the end.
I don’t want him to suffer, but I also want it to be his choice when he takes off the oxygen and decides to go. He shouldn’t have to suffer when there hasn’t been hope or a cure or any improvement for years. Why would anyone wish suffering on someone else?
Thanks for putting into words the difficult situation that all of us in our generation will face. I’m so sorry that you and your wonderfully supportive mother had to experience such emotional pain, but I hope part of her legacy will be the human right to choose for ourselves how to live throughout our lives and how to die with dignity.
Stunningly powerful.
Thank you.
Why do people make up reasons to be against things? “Laws morph over time” my ass. Look at the second amendment. The gun fanatics of the country have kept that thing going strong since the beginning of the country. Granted it’s an amendment, not a law.
I just don’t get it. If you’re afraid of making a law that allows doctor assisted suicide because it MIGHT change into something you fear, why aren’t you afraid of capital punishment laws? What if that morphs over time into “Anyone who ever commits a crime can be killed on sight”? None of these right wing nutjobs ever worried about that do they? So why for doctor assisted suicide?
And what do they fear the doctor assisted suicide law will morph into? All suicides legal? But again, why are they afraid of that? If they don’t want to commit suicide, they still don’t have to.
Sorry, had to get that off my chest first. I’m terribly sorry for your loss Dan. I am also infinitely appreciative that you were able to and wiling to write so powerfully and rationally about something so painful.
Beautifully written Thank you.
I am currently living with Pulmonary Fibrosis. It’s an ugly disease, and a rare one, so money for research is scarce.
Your family is in my prayers. My man and I have had the conversation. He’s a physician. We made our choice.
Ultimately, it really should be our choice, not anyone else’s.
Best mojo to you, my friend.
I understand the hurt and pain because the same thing happened to me, except I had to stand alone beside the hospital bed as my mother gasped her last breaths with a fearful, pained look on her face. I’ll always wonder about the nurse standing there with the syringe of morphine asking me what do I think we should do about the pain she was in. Was she asking if I thought she should inject a fatal amount of the drug? I didn’t know what to think or say when she asked that.
I am a long time reader (both books, your column) and am a doctor, too. I would like to pass on my deepest condolences to you, Terry and DJ. By all accounts, your mother was a remarkable woman, and a role model for me as a mother. I would like to make a point, though. You know, giving morphine to a patient in extremis almost always hastens death. It does so by acting on the centres of the brain which control respiration, reducing the brain’s sensitivity to low levels of oxygen, and therefore the perception that more oxygen is required for life. this is what stops breathing in drug overdoses too. You might wonder why i am saying this, but it relates to the fact that in most cases, when we administer morphine to aid in a persons last hours or days, we as doctors are knowingly speeding death. What the hell is the difference between this and assisted suicide? In essence, we are assisting anyway, whilst pushing the entire burden of decisions relating to the shortening of life onto our patients families. What was that doctor doing, really, except making you all responsible for your mothers last hours? As a human being, a mother, a sister and daughter, I would like people to be more honest about these times at the end of life. i would like to see doctors being more responsible for managing patients, rather than insisting families making decisions that can haunt them forever. I would entirely support the right of any person to die with dignity, in the time and manner of their choosing.
Most of all, Dan, I would like to thank you from the bottom of my heart for sharing your life with us, at the hard as well as the easy times. You are an inspiration to us. I wish you all the best, and will remember your mother in the spirit in which you have described her.
Wow. Wonderfully written. If we ever have this initative in Montana I will support it whole heartedly.
Thank you, Dan. That was beautiful, and painful, and sad, and so so right.
My condolences to you and your family.
Thank you, Dan. Thank you.
After ten years of hospice work in Washington State, I’ve had it, too. Let people go out the way that makes them happiest.
You’re a wonderful writer, and a wonderful human being, and I wish you every good thing.
Aw, Christ. I haven’t read the WA legislation (I’m not in WA, lest you worry), but I support the concept and trust Dan on it. Like almost everyone, I’ve been there as a bystander too… but as a supporter, I have to be sure of my logic. So — “WTF, linda?” — sorry, but I’m going to have to pick yours apart:
“In essence, we are assisting anyway, whilst pushing the entire burden of decisions relating to the shortening of life onto our patients families. What was that doctor doing, really, except making you all responsible for your mothers last hours?”
If we roll with Dan (and our personal convictions) and say it’s all about the *patient’s* choice, is this responsibility a problem? We only get to choose certain parts of our families (subject to legal restriction, offer may be void outside of CA, CT, MA) but the legal concept of “next of kin” as the default is longstanding, and for now, patients should expect it applies unless they’ve executed documents stating otherwise (and made sure their medical providers are aware of them — another big mess!).
“As a human being, a mother, a sister and daughter, I would like people to be more honest about these times at the end of life.”
Fair enough. Honesty is always the best policy, right?
“i would like to see doctors being more responsible for managing patients, rather than insisting families making decisions that can haunt them forever. I would entirely support the right of any person to die with dignity, in the time and manner of their choosing.”
Reconcile that: Doctors should be more honest about end-of-life care, but should also “manage” the patient to shield the family from having to make the substantive choices?
Shee-it. That makes things like the insurance catch-22s look simple in comparison. So let’s try this:
*Doctors* should be spared from making the decision whenever possible, foremost because being permitted is going to fuck up doctors. The scenarios that really make us squirm — euthanasia for babies in the Netherlands, mercy-killings during Katrina, the occasional nutjob playing God, and all the slippery-slope scenarios that exist only in imaginations — have that element in common. People in the medical profession have too many decisions to make under pressure already, and there’s no way for them to win at this one.
When we’re not terminally ill: Who wants the doctor or EMT with that option available? The one who has exercised that option without patient/family/… input? How many times? It’s unfair to everyone, and if it ever does have to happen, someone else should always have to sign off on it before or soon after, so the *doctors* can be sure they’re not playing God or losing their minds. That would also check any who might be, of course… As a public, we need to believe caregivers are putting their jobs and standing on the line when they exercise this most drastic option alone; anything else erodes our faith in the medical industry, even if it’s unreasonable. If next-of-kin aren’t around, they’ll *always* need to see sincere apologies and begging for forgiveness, for instance, not confidence that this is business as usual.
As to morphine, there’s no reason to beat around the bush unless you’re determined to be intellectually dishonest: The best *palliative care*, like all treatments, has risk — in this case, respiratory depression. If you understand the disease process you’re treating, it should be hard to say that it’s doing harm — unless, of course, you go overboard intentionally and interrupt that process without consent.
I could say a lot more here, and I’ve probably stepped over too many fine points in the name of brevity (and it’s already been three hours writing this!) but how about this? The Schiavo mess showed us that we (as individuals, and as a society and a nation with the ability to legislate and adjudicate and clear this stuff up) need to become a lot more sure about who gets to make the call — and that includes who gets to make the call when nobody else is around.
Mandating electronic medical records might make it easier to actually pull up your living will when it’s needed (if you’ve got one, and would dare say anything about assistance in it), but even that’s just a start. We need to get everyone to accept, and truly believe, that those declarations mean something — and in a world with assistance available, understand what the conditions are, so that everyone can be comfortable that it’s being done right and having only the positive effects that it should. While we’re at it, let’s fix health care, organ shortages, and the economy.
Yikes. And my condolences again, Dan.
My mother died in a remarkably similar way in November, choking on water filled lungs and I was right there holding her hand.
My father, who is a physician was handling her care and pain management, and I was desperate for him to assist the process along, because it was clear to me that she was in a lot of pain.
I understand why he wouldn’t make that choice, but my own position on the matter is now crystal clear. It is inhumane not to offer people an opportunity to skip that kind painful, horrible, and horrifying end.
Your writing about your mother makes me cry, and my thoughts are often with you and your family.
You and your family have my condolences. Having buried my whole family on both sides–all but three–over the years, I have been there many times, and the last time wasn’t any easier than the first.
I’m sympathetic to your feelings, even the anger which comes out. I agree it should be between a patient and her physician, with any of the family that the patient cares to bring in to talk about it with.
Unfortunately, while the patient is alone, the physician isn’t. The physician is subject to a thousand rules and regulations, and except rather rarely the physician, technically, isn’t even employed by the patient, but by the patient’s healthcare provider. There is a lot of bureaucracy involved. How often over the years I heard doctors say, “I’d love to help you but …” or “I’m sorry, but my hands are tied,” or “It’s simply not our policy,” or variations on that trope. The one that always has irritated me the most is, “The benefits have run out. There’s simply nothing we can do. She has to be out by tomorrow.”
I’m not worried about ‘Death Doctors’ going around and injecting patients willy-nilly. I am worried when I see how persuasive medical people can be. Ill and dying people aren’t stupid, but often, neither are they immune from pressure. They may love you, and have their own desires, but they know that their fate rests in the hands of the attending physician, not you. And the attending physician is himself subject to pressures of you know not what kind from the institutions where he works and the bureaucracies that pay him.
I wonder why there is a felt need for this law when patients can already make choices that allow them to pass in a way conformable to their wishes. With my mother it was cancer, and she opted to decline all therapy and simply go on massive pain medication until the end came. She felt nothing after she made that decision, and the end came quickly. One aunt and my grandparents were able to make similar choices, though I can’t speak for other relatives who died suddenly or away from hospital conditions.
And if this measure became law, would statistics on it be published? Would the public be allowed to know how many instances of PAS occurred in this State over a given time frame, and under what conditions? Not if Oregon is any example. It would only add to the amount of stuff going on that we don’t know. Suppose a patient passes suddenly naturally with a family member not there. What will keep that member from suspecting a PAS that didn’t happen? What about family members that are divided in their opinion? I can easily see ugly bedside quarrels over this subject; there are already so many over others. If Mom passes suddenly, who’s to say one child didn’t encourage a PAS because he wanted her house?
With so many choices already available, with DNRs and physicians already willing to cooperate with patients to a great extent, as much as they can, I just see this not solving much, and creating many more problems than it addresses.
Thanks for sharing this. It made me cry.
I know that when my great grandmother was in her last few years of life, her doctor gave her an excessive prescription for a pain killer that she never used, for this exact reason. And when I found this out, I thought it was wonderful. Not because I wanted her to die, but because I didn’t want her to feel any more pain than she already had in the decade since her husband’s death.
Thank you, Dan. My heartfelt condolences. I’ve passed through something similar with my father.
But I wanted to say this– hospitals have got to set up a system whereby the staff knows that something serious is going down in the room. A little flag on the door– something for christ’s sake.
You had an orderly swinging in with a menu. In my case, my father had just passed–we were all awed at the sudden quiet and amazing transformation of his face. The family huddled around the bed in stunned silence. And in that frozen moment a jolly technician burst through the door and sang out “So how’s he doing today?”
We all blinked at him. He blinked at us. Finally I said, “Well.. he’s dead.”
It was sort of big question, you know? How is he? Where is he? The question struck me as very interesting, and kind of funny, and so in my shock, I wasn’t angry at the intrusion. I just stated it as fact.
The poor guy couldn’t run away fast enough.
Flags. Little flags. Or those cards that go on hotel doors: “Death in Progress”
Great piece, Dan. My mother died two years ago of IPF too. I don’t wish that kind of death, so cruelly slow, on my worst enemy, even less so on someone I love
It’s not my right, or my business to tell anybody how to conduct their lives or how they choose to die.
I don’t believe it is the governments or the church’s business either.
My father died much the same way as your mother and like your mother, I don’t know if he would have chosen the pills but I would have rather he had the choice and I know for CERTAIN I want the choice so I will be voting yes, come November.
Thanks for your post.. It was the tipping point for me.
thank you for sharing such a deeply personal event. i too want to have the choice. i will vote in favor of I-1000.
Thank you so much for sharing your family’s story, Dan. Wishing you all the happiest of memories and heartfelt best wishes.
Good gracious I appreciate you more than I could ever convey through a text-based format.
Thank you so much, Dan, and please …
PLEASE, run for some sort of office, and save this fucking mess of a world.
Janna Shields
Curiosity got the better of me. Here is the full text of the proposal, and I’d suggest all of you who are in WA read it, especially if you’re concerned about corner-cases:
http://www.secstate.wa.gov/elections/initiatives/text/i1000.pdf
Notably, it is written entirely from the perspective of *patient* choice, which does mean it only applies when the patient is competent and coherent. On top of that, there is a 15 day waiting period between making the request (in a written and witnessed legal document) and receiving treatment.
There are specific terms (Sec. 17) to prevent any SNAFUs with life, health, or accident insurance — though this could be worded more strongly, since it talks about procurement, rates, and “shall not have an effect,” rather than an affirmative order that, say, life insurance pays out.
If assistance is requested and taken, death certificates will list the terminal illness as cause. That seems like a necessary hack for life insurance, but also a way to “protect” the family, who’ll have to share the certificate with numerous entities and businesses when dealing with the estate. This ‘little white lie’ will keep the patient’s decision private, but it also means there’d be no destigmatizing effect among the people who process such paperwork. I’m with(?) linda here, and think a primary cause of terminal illness and secondary of [name of medication] would be appropriate — with some sly latinate prescriptive markup to indicate a request was made, lest the drug get a statistical reputation as a ’cause of death.’
As it stands, Sec. 15 states that individual records will be kept, but not be public, and an annual statistical summary will be made public.
Sec. 18 gets a bit euphemistic, specifically not authorizing “lethal injection,” “mercy killing,” or “active euthanasia,” while also declaring everything permitted in the act to not be those, nor “assisted suicide.” Instead, the act permits “obtaining and self-administering life-ending medication.” This could be squirrely, but “self-administering” is certainly the important safeguard.
There’s a lot more, including text of the consent forms. The only thing that bothers me is that, while the forms require two indifferent witnesses, at least one unrelated and none employed at the patient’s health care facility, they’ve thrown in a puzzler that “If the patient is an inpatient at a health care facility, one of the witnesses shall be an individual designated by the facility.” On the one hand, this gives the facility some veto power if they aren’t comfortable, but it also gives them the power to screw around. (It’s like some stupid MENSA logic puzzle: Bob always signs? Bob never signs? If Bob always signs, Alice is the only witness who matters, and if Bob never signs, you don’t get your wishes acknowledged even if you were of sound mind and filled out your form.)
Nonetheless, I think they got the tone right. The doctor is not forced or empowered to make new decisions — he or she is there to diagnose the terminal illness and to follow the patient’s requests. They’re going to keep serious records, albeit out of public view (my thoughts are mixed). You would have to try sufficiently hard to fuck around with this, and if you did, the records would be subpoena’d and you’d be caught.
So while Seajay expressed some of my gut reactions, particularly re: doctors and family, it’s clear this proposal takes those into account. If you’ve got a vote on this one, *read the damn text,* then get out to the polls and do what seems right.
Dan –
I went through a very similar thing in April, when my father died of pulmonary fibrosis at the UW. He had been very forceful in his decisions to not be sustained artificially, though we all wondered if he thought the high-pressure oxygen mask he wore was artificially keeping him alive.
The doctors allowed him to choose a “pain-management” death – being slowly overdosed on morphine while reducing the oxygen he was getting. It was horrific to watch – we had struggled for so long to get him the oxygen he needed, now we were taking it away. We knew he was in some amount of pain, we could hear it in his whimpers.
I and my family are all supporting I-1000, but it is only part of a larger need for better education and patients’ rights. At the time of his death, my dad was working on his 29th book, about his journey towards lung transplants. He never made it there, and it’s one project of his that I don’t think I will be tackling any time soon. It’s just too painful to remember.
Your article made me cry.
Beth
I was on the fence and now I am not. Thank you Dan for sharing your story.
I really do agree with the fact that it should be legal for a terminally ill patient near death to self administer life ending drugs. But what is the definition going to be for ‘near death’? What’s going to happen when one kind of suicide is legal and people want to push for general assisted suicide? These are my reservations. Being ‘religious’ myself, I can say that if you actually want people to understand you, saying ‘fuck your god’ isn’t exactly the best way to go about it.
I agree that people shouldn’t force religion down the throats of others, but my reasons for avoiding assisted suicide and abortion aren’t religious, they are societal. I’m concerned for the way that our culture will transform if these types of things are allowed. Hopefully that gives you a little more respect for the opposite perspective…
These issues aside, the best for you and your family. I recently lost my great grandmother, and I know it’s very hard.
I am sorry for your loss, Dan. I lost my father to cancer. Although he went in a matter of months, it was very difficult to watch him die. Hang in there.
Thanks, Dan.
I’m e-mailing this to my doctor and my hospice.
Somebody commented above about dying a ‘wrongful death’. I wonder what’s ‘right’ about dying in agony when that can so easily be avoided or ameliorated?
We don’t need to die like a dog – in fact, even a dog doesn’t.
I’m sorry that I don’t have anything to say that would be especially meaningful or consoling in your loss… But my boyfriend’s mum died on 22 August and this article was very meaningful to me in mine.
The impact of your article will be far reaching. I had just gotten done reading an article that my church published about the efforts of Hospice and the lack of need for I-1000.
My mom recently passed away, also from Pulmonary Fibrosis, and she came THIS CLOSE to missing the opportunity to go home with Hospice Care. Hospice is awesome and in a perfect world, I-1000 would not be necessary.
Reading about your dear mom and what you all had to go through is really heart breaking. What occurred to me, and I appologize for not having realized this sooner, is that this is not a perfect world. I am very sorry for your loss, hope you find comfoft at some point, and want you to know that I have now decided to vote for I-1000.
I watched my mom die earlier this year. It was cancer, and she fought it for a good five years. In the end, she was on hospice, and I had plenty of time to watch her sleep more and more until she quietly died.
Mom didn’t request anything but pain-killers, but it was still hard to watch her, a formerly active lady and avid walker, unable to sit up or roll over on her own. She was already terminal — if she had requested to end it early, I would have wanted to be able to legally do so.
I don’t think doctors should be deciding this for people. But if the patient is already on terminal care, please make this option available to them and their families.
–Becky
I’m so sorry, Dan.
Dan, thank you for writing this. My father died of Pulmonary Fibrosis a year and a half ago, and it’s a heartbreaking moment to be in a parent’s (or any loved one’s) life at the moment they are so vulnerable. I would have helped my father with a glass of water and pills, too, and it’s hard for me to imagine living through that and not wanting to help end his pain. I was lucky enough to say goodbye, and he told me he waited for me to arrive before he died. I would have helped him with that goal–and I did, by being there to discuss pain management with the doctors.
To deny “assisted suicide” is to deny pain management. While others may be able to do that to a loved one, I certainly could not.
My thoughts are with you and your family.
Dan, I’ve been a longtime reader of your column, and though at 18 years old I hopefully won’t have to face a situation like this for a long time if ever, I really admire your courage in such a terrible situation. It is utterly criminal that your mother was forced to endure that kind of suffering to satisfy some holier-than-thou zealots who don’t even know her name, and we should all be outraged
PS: As a Tucsonan, I’d like to apologize for the state of our hospitals-many of them are grim, soulless, and dung-colored, though I can testify to knowing a few excellent doctors who work in them.
Hey Dan,
You’ve done a great service by telling us the story of your mother’s death–it’s a wonderful tribute to her and your relationship with her. We would like to make one observation about her last hours that does not fit neatly into the debate over I-1000: it doesn’t sound like the doctors and nurses were terrific. In fact, it sounds like they were ineffective at helping you and your family feel prepared for her death, and ineffective at helping your family create the kind of ending that would have made for more comforting memories. Not having been there, of course, we may be lacking in some of the details. But it always surprises us that families of dying patients expect so little from the medical care their loved ones receive at the end of life. We’d like your readers to know that they can ask for better care–maybe with the help of palliative care clinicians who specialize in this sort of thing. In your article, the question of what to do in the last hours of a life has just two answers–stand by helplessly, or give a medicine to hasten death. End of life care that is
excellent offers more than just these two answers. If you’re in this spot, you should demand better, and maybe a palliative care consultant.
This article is simply a masterpiece. I have read it and re-read it and yes I am infuriated too that others would try to rule my choices at the end of my life. I am 50 now and hopefully there is time for outdated laws to change before I reach an age where I might wish to end my life quickly to avoid suffering. I remember your stories about your mom in “The Commitment” and am so sorry to hear about her passing. I wish it could have been a more peaceful passing for her.
Death should be a personal choice. My grandfather died while being pumped full of just enough morphine (pain management) that the drug itself wouldn’t kill him. It took an entire month for him to pass and the whole event was AWFUL. Yes nearly my entire family got to say goodbye; however, I don’t know that I want to remember seeing him in the hospital that way. He was ready to die, and wanted to, but it took a month. If he had a choice, I know it would have ended sooner. And it would have been better for everyone!