In Defense of Dignity

I Hate to Play the I-Just-Watched-My-Mother-Die Card—But, Um, I Just Watched My Mother Die

Comments

103
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.
104
So sorry Dan. Powerful words.
105
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.
106
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.
107
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.
108
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.
109
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.
110
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.
111
Dan - please accept my heart-felt sympathy. Your mother was a wonderful woman to have brought up a son like you.
112
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.
113
I'm so very sorry for your loss.
114
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.
115
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.
116
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

117
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?
118
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.
119
Stunningly powerful.

Thank you.
120
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.
121
Beautifully written Thank you.
122
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.
123
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.
124
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.
125
Wow. Wonderfully written. If we ever have this initative in Montana I will support it whole heartedly.
126
Thank you, Dan. That was beautiful, and painful, and sad, and so so right.

My condolences to you and your family.
127
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.
128
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.
129
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.
130
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.

131
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.
132
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"
133
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
134
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.
135
thank you for sharing such a deeply personal event. i too want to have the choice. i will vote in favor of I-1000.
136
Thank you so much for sharing your family's story, Dan. Wishing you all the happiest of memories and heartfelt best wishes.
137
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
138
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.
139
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
140
I was on the fence and now I am not. Thank you Dan for sharing your story.
141
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.
142
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.
143
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.
144
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.
145
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.
146
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
147
I'm so sorry, Dan.
148
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.
149
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.
150
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.
151
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.
152
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!
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I've never commented on any article before, but that was so moving, so poignant, such absolute truth that I felt compelled. My grandmother died of the same disease as your mother and I remember watching her, at age 12, make those same decisions with Hospice in our home. A few months ago my father died from bladder cancer which had spread through his body. As I sat with him, waiting, waiting in what I called "ring side seats at the death bed show" (hey, you have to find some way through it, laughter is mine...) I longed so strongly for a just and dignified way for my father to die. Thank you for putting to words what so many of us think. Amanda
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I am in my late 40s and fighting stage IV breast cancer, in hopes of getting a few more years of the life I love. At this point I do not know if I'll have months or years or a decade or more: cancer is different now. Unfortunately, outside the medical community, most people still equate stage IV with "terminal." This attitude is so pervasive, unconscious, and deep, that a couple of longtime friends I'd thought I could count on forever, smart friends who normally know better about stuff, have dropped me like a zombie and left me for dead. The pain is indescribable as I fight this disease minus much of a support network. Sex & The City, this is not. My life is very bleak, and October's toxic pink ribbons can't bind up my ripped-out insides as I walk through the leaves alone.

"Long story short," uh...

1. Society's attitude toward catastrophic CHRONIC BUT SURVIVABLE illness such as my breast cancer terrifies me. I AM STILL THE SAME PERSON, but I've watched people I thought I knew "put me in the grave alive" and walk away. Former friends refer to me as "terminal" while I go about an active, productive, creative and joyful life. They assume something about me I can't fathom. I AM STILL HERE.

2. The attitudes of insurance companies, 'bots at the HUGE cancer clinic I go to, even some doctors and nurses, terrify me. Yes, there are some wonderfully compassionate people in medicine. But they are part of an industry which sees me as an insignificant cluster of numbers to be swept along on the conveyor belt as fast as possible to maximize profits. Profits for shareholders, profits for CEOs, profits for the wealthy few who own this system: THAT is the bottom line. Not my life. Not your life. Not the dignity of life. The moment I become just unprofitable enough AND just invisible enough, THERE IS NO SUCH THING AS A CORPORATE CONSCIENCE in place to save my life.

Without going into too much detail, the clinic I go to (it's HUGE) has already referred to my insurance as "not good enough" several times. I carry the same insurance thousands of workers in this area have. It is NOT "bad" insurance. But apparently it's not the extra-deluxe insurance of the wealthy which this megalo-clinic's beancounters prefer. And some of them are not shy about saying so. What scares me is what they are NOT saying, if they'll be that blatantly cold about my lack of value to my face. They terrify me.

So we need laws, I think. Yes, I would love the ability to choose a softly opiated exit into warm, turquoise seas of infinite unity. Yes, this option should be legal, along with ten thousand other inherent human rights to bind one's own wounds.

But until I stop waking up in a cold sweat knowing that, as a less-wealthy person, a working class person, my life means exactly NOTHING to this system, I WANT A LAW TO PROTECT ME.

I am quite literally afraid that the clinic, and my own doctor, might be persuaded to neglect my treatment, might be persuaded to give me a little push in the direction of euthanasia, TO SAVE A FEW DOLLARS. My life is simply not worth saving, to them, if preserving it conficts with greater profits for the shareholders of the ruling class.

I am fighting cancer on so many fronts. I am exhausted. And worrying that my doctor and my clinic could smile coldly and end my life with a few little pushes toward euthanasia "for my own good" is yet another waking nightmare. Please do not trust a system which values profits above all.
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Dan
Your experience and perspective on your mother's death has moved me greatly.
It evoked feelings I, too, will never resolve about my own mother's lonely death.
Dan
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Thank you for your story. I think the concept of assisted suicide is foreign to those who have not had to deal with a terminally ill family member. I could go on about my personal experience, but it really will not help to persuade those who do not understand or relate. All I can hope is that people will allow others to do with their life what they want. If someone wishes to end their own life due to extreme pain, please let them do it with a few pills rather than a kitchen knife. Best of luck to everyone who has to deal with death... It catches up to all of us and our family members in one way or another. Gina
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Despite not being able to choose (it's our life and our body, I would like for people to be able to choose), your mother was surrounded by many people who loved her and she loved. I'd like to feel that her spirit was probably at peace and love at that point. My mother was able to be in hospice in the hospital for a few days on morpine also. Thank you for sharing your intimate story, your great writing, and to bring this issue to light. xo Beki
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Your article brought tears to my eyes and reminded me of my own mother's recent death.
For whatever reasons, numerous tests and biopsies didn't show the cancer tumour growning and spreading in my mom's stomache lining. When the doctors figured out what was going on, nothing could be done and they gave her 2 months tops. According to my sister, when they gave her this news it was like someone took a pin to a balloon.
She instructed us that there were to be no heroic last minute measures to keep her alive any longer than her body wanted- no CPR, no machines, no feeding tubes, etc. My mom believed in God and was actively involved in her church, yet she also strongly believed in quality of life versus quantity of life.
I live overseas and it was 2 weeks before I could make it home after getting the news.
Ends up she was hanging on, waiting for me to get back. She was heavily medicated, including anti-anxiety drugs and morphine. I was with her when she went: it was not pain free, she was calling out for help while crying that it hurt so bad and she just wanted us to make the pain stop. And of course, those of us with her felt so powerless because there was nothing we could do to help her.
It made me think of a conversation with my sister - she said we treat our pets better than fellow humans. That if a pet was in pain and suffering like our mother was, you would put the pet down. But that you can't do that with your family because of the sanctity of life - instead you have to make them suffer up until their last breath - literally.
People should be given the choice in the case of a terminal illness. I don't ever want to suffer like my mom did. I am thankful that she didn't suffer for very long - from getting the news to her passing was 17 days - but I would have preferred it if she didn't have to suffer like that at all.
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Tears.
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Dan, I grew to love your mother through your books. I am so sorry this happened to you and your family. I wish you peace.
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I'm crying. Man, that was painful to read. I'm like your mom in way--an anomaly. A pro-choice, pro-gay marriage, etc practicing Catholic. In other words, a very rare bird. It seems to me that there is some reasoning which can make abortion OK to Catholics. According to my Catholicism for Dummies book (and I'm paraphrasing here) if there is a procedure done to save a mother's life, which inadvertently ends the life of her unborn child, that's OK, because it wasn't a *deliberate* act to kill the fetus. It's like a moral loophole. I imagine that there can be a loophole for physician assisted suicide...for example, letting the dying patient self-administer painkillers that might inadvertently have the effect of causing the patient to die. The emphasis would be killing the PAIN and not the person. But that's the religious justification. As a strict separation-of-church-and-state believer, I don't think the government has the right to tell anyone what to do with his or her body, up to and including, suicide. Just putting it out there.
Deepest condolences, Dan.
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dan, as a health care professional that works in end of life care, i applaud your well written, honest, loving story. i too believe in choice. who are we to "limit" the experience of the dying? i have been present at hundreds of deaths, they are each spiritual, individual and on the dying person's own terms. choice is a comfort measure.
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once again dan savage has proven that while he may not be the very most,he is definatly in the top three most sensible humans ever. talk about your strait talk express!how about dan and tina fey team up for a white house run in '12? i can even wait for'16.they could start a new trend...co-presidents! i like it. best wishes to you and your family dan,keep on keepin' it real for all of us. joe norcio seattle
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It can be said in one quick statement... keep your religion out of my government.
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Dan,
I am so sorry for your loss... I have been a fan of your's for a while and after reading this you have become my hero. Thank you. If I lived in WA I would vote for I-1000.
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crying my eyes out for you dan. i love you so much.
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Dan, that sounds like you had a horrible experience during your mother's death and for that I am truly sorry. As a health care professional that works in hospice and palliative care, I can tell you that the doctor should NEVER have told you or your family "there is nothing more we can do" for your mother. That is tantamount to abandonment. We do not stop caring for patients even when (especially when!) they are dying. They could not stop the inevitability of her death; yes that is true. But what they should have told you is that they would do everything in their power to control the things that were making her so miserable - pain, shortness of breath, anxiety. These are symptoms for which we have very safe and effective medications that could have been given to your mother to make her comfortable in her final moments. We do not give medications indiscriminately to end people's lives; most often, the doses needed for relief of suffering do not hasten death. Herein lies the key difference between well-practiced end-of-life care and physician-assisted suicide. They are NOT one and the same, although unfortunately the public discourse often confuses the two. Having good end-of-life care eliminates the need for physician-assisted suicide, in my opinion.

Resources:
www.nhpco.org
www.getpalliativecare.org
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We recently went through this with our mother. I held her hand for 2.5 hours after she passed and washed her before the funeral people came. It was the best and last thing I could do for her.

Your writing captured much of my own feelings. My brother, father and I were asked to make the final decision. My greatest comfort was that our decision was heart-felt and unwaveringly unanimous and yet, somehow I feel haunted. She passed on May 16th and yet it feels like this morning. My heart still sings for her and I cry, sometimes, that there is no answering note, and yet, silence IS part of the music of life too.

Hugs, if you want them.
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"the hour chosen by God" is when the body gives out, whether by age sickness or accident. Anything else is the medical establishment imposing its will upon you, for profit, not God.

"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""

How can you enhance life if you cause it more suffering by not letting it end as a person wishes?

Please, vote Yes on I-1000.
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Dan,

My heart goes out to you and your family. I can not say that I've been in the same situation as both my parents went rather quickly. However, I do think there are ways around the laws to facilitate a dignified death as a friend did...no questions asked..just careful planning. Keep the memory of your mum alive within you all...because that is the best tribute. Hugs, St.
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This was stunningly and achingly beautiful and powerful, Dan.
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This was heartbreaking but beautiful. My condolences.
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Tucson isnt really dung-colored by the way....
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You don't get to 'play the dead parent card' and use it to get away with an attack on Catholics. Since Islam, Buddhism, Muslims, etc are off limits--especially in flaky Seattle--it's a chickenshit strategy.

It shows the low state of U.S. education and critical thinking that an idiot you can bring in the abuse of kids by a few priests in a church of one billion followers and a 2000 year history. No matter that abuse in the Catholic church was no higher than amongst educators or other faiths (though the hierarchy should be criticized).

No mention of the Church's stand in the sanctity of life or the deeply felt and honestly came by beliefs. You may not agree with it, but you're just an ass who hid behind the skirt of his mother's death to throw bullshit comments out.

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I would add here that I am not a practicing Catholic but I do have respect for the beliefs of all faiths and even those of atheists.

You're still an ass.

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Dan, My father died of this exact same disease in February of 2005. He was diagnosed in August of 2004. It was terrifying and heartbreaking. My mother stockpiled the morphine hospice brought and I think she ended his suffering that last morning. Our family still reels from the pain and trauma of this disease and the decisions we had to make. Thank you for sharing your story.
179
Dan, I love ya, and I'm sorry for your loss, and I thought this piece was mostly great...but dude, that "Fuck your God" line was a dumb, dumb, dumb, dumb, dumb, dumb rhetorical choice. Dumb, dumb, dumb, dumb, dumb, dumb, dumb. You ALMOST had a great piece of writing that could have been used to convince members of the religious right why they should at least sympathize with your point of view. But with that line, you blew it. You lost them. No mission accomplished. No, they wouldn't be regular readers of Savage Love, but they could have found it in other places, such as in a circulated e-mail. Come on, man, what were you thinking?
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When I was 15 I had to watch my maternal grandmother die right in front of me after taking care of her all summer. I am also a Catholic but PRO-choice/gay marriage/physician-assisted suicide. My thoughts, prayers, and heart go out to you and your family, because I know what it's like to sit and watch someone you love and say "is their suffering worth it?" Blessings on you.
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I find the "slippery slope" argument against physician-assisted suicide quite uncompelling, especially as compared to the stories of families who lived to witness excruciatingly painful deaths of loved ones who were not offered the choice to manage their death.

Such arguments presume that we are not capable of drawing a line in matter- that once Pandora's Box is opened, in a couple decades we'll be euthanizing anyone without the preferred genetic composition. There is, after all, a clear distinction between a voluntary choice of a terminally ill patient and an involuntary action foisted upon them by others.

The slippery slope argument can be applied inappropriately to all manners of arguments, and this is just one of them. In Oregon, physician-assisted suicide is already the law. Would repealing that law introduce a slippery slope where the society forces physicians to keep all patients perpetually on life support, despite the wishes of the patient? Of course not- and neither will accepting I-1000 lead to similarly dystopian results.

BTW, are some opponents to I-1000 really comparing supporters to Nazis? Is that really where you want to take this?

Dan, I'm sorry to hear about your family's loss, and like you I hope we can offer those facing similar prospects as your mother a respectable choice on how to depart us.
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As someone who watched her mother claw her way toward death, fighting every inch of the way, I can only admire the incredible bravery your mother showed at the end of her life. I also admire your bravery for writing about it so openly. Thank you for sharing this story.

It's been ten years since my mother died and I still think about her every day. I hope that you find peace as you make your own journey through grief.
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I remember when Oregon was debating this. There were all sorts of terrible predictions, but we voted it in anyway (twice!), and the system has worked well. None of the dire warnings have come to pass, and one side effect has been significant improvement in palliative care for the dying.
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Posted by SirVic; "And for Catholics...No organization in human history has as much innocent blood on their hands as the pope and his gang."

Don't let your comic book derived historical knowledge get in the way of truth Einstein.

No matter that millions have derived comfort from the Church. No matter that the Church's teachings on poverty demand compassion and kindness.

No matter that nationalism or political ideology have far more victims. No matter that millions of Catholics throughout history continued to administer to the poor no matter what the income. No matter that the Inquisition was far less onerous than set of falsehoods the English propaganda of the time pushed.

And of course a flaky Seattle hipster-doofus like you would never face a historical truth such as the fact that Islam has had a far more warlike and bloody history.

Check out a history book not a few nitwit website articles before you spout idiocy next time Lord Acton.
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Hi Dan
I have just com back from a trip to see my dad in hospital. I arrived , met my brother on the sidewalk outside the hospital and he told me the news my dad had died that morning. My brother did not want to call me while I was driving. I went in to see my dad and it was so sad to see him in the place he hated above all places, hospital. He died of pneumonia because he had had TB when he was 21 and only had 1/3 a lung on the right side and 2/3 on the left. He knew it was his Achilles heel. He had turned to my sister a week before, blind, thin and hardly able to talk and said, "I am done". She knew what he was saying.
He held out long enough for my mom to arrive so he could lift both his hands up to touch my moms face. The love of his life for 60 years.
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Your pain and frustration are understandable, and your points are well made. However, to blast God with an F-word completely erases any credibility that you have in mine, and other good folk's eyes.
I realize Chrstian churches and their leaders have been hypocritical and far from the pious leaders they'd like to be seen as. But I'll have you know, they are truly but a small minority in Christianity. Most Christian people do their best to live a good life and practice what they preach.
You have a good argument, even if I don't agree with it. Too bad you can't keep your caustic opinions and harsh language to yourself and present the facts of this narrative in a respectful way.
Respect is a two-way street my friend, and you just lost mine.
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Hey Dan. My father died in a way not so different from your mother. Cancer metastized to his lungs, on oxygen, couldn't breathe. He died at home, and I remember all too well the slow intrusion of interventions, the steady weakening of a man who's strength had been there all my life.

He died with my mom and sister beside him. I'm the one who gave him the last morphine injection. I wouldn't let them do it - some misplaced sense of eldest-son duty I think. I didn't want them to feel responsible, so I took it on myself - I'm proud that I did. Morphine suppresses respiration. He would have lived longer if I hadn't done it, but all lives end. He felt no pain at the end, it's the best any of us can hope for.

Lives are not pennies to be saved, not stamps to be collected in return for some mail-in reward. Those who "Choose life" too often forget that what matters is not merely being alive but how you live.
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"Fuck your God." On the face of it, it sounds offensive. But when you are experiencing the gut-wrenching agony of watching a loved one suffer, such expression merely portrays a genunine response. Thanks for being so open and real Dan and for loving your mom so much. I am sorry.

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Dan,

I am very sorry to read of your mothers passing. It is a horrible thing to have to go through.

Your words hit home with me all to well. 5 years ago my mother finally lost her battle with lung cancer. I will spare you the long details of her "sticking it up that Dr's ass" that she lived 3 years longer than she was supposed to. Her final moments were very similar to your mom's. She fought and battled the whole time. I was begging the attending Dr the night she died to just give her so much morphine that she would just go to sleep and never wake up. I do not know if my mother would have chosen the "assited suicide" route or not,but I would have liked her to have the choice. Fuck those Catholic bastards. Being from Boston and a one time altar boy, they can go shit in there fists. They are one of the most vile organizations on earth.

Again, sorry for your loss. It seems you were very close to your mom. I just want to say,if she is anything like my mom, she left you with all you need to get by in life.
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My dad died of kidney failure after an emergency surgery to repair a burst aneurysm failed. He'd been a do-not surgical risk, with emphysema and heart trouble, so the surgery wasn't even considered until the thing burst.

He never came out of the anesthesia, but he was kept on painkillers--we never had the chance to say goodbye.

I had the option of putting my cat to sleep, painlessly, when her kidneys shut down. The law did not give us the same option with my father.

BE AWARE: even if you have a living will, as Dad did, signing permission for surgery can void that document. One of my 3 siblings had a terrible struggle with the question of taking him off the machine, until the docs told us his inner organs were shutting down.

Dan, I've been there, it's horrible. I'm glad you had family at your side.
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Dan - I can't stop tearing up and reliving my Dad's passing last December in very similar situation, is not an easy road to travel and they say time heals, it gets better after time passes but for the healing I'm still waiting... I personally want to thank you for sharing such an intimate experience it truly helps those of use going through similar situations. It’s very powerful and touching in every sense.

Things will get better… my condolences.
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Beautifully written, Dan.

We can't even GET a proposition like that here in Tennessee. I wish you the best of luck in getting it approved.

Don May
Memphis, Tn.
195
My condolences to you from Argentina, Dan.

Beautiful and powerful writing. We, readers, feel your pain and sadness.

Abrazos.
196
When my father was slowly slipping in much the same way, they came in to weigh him. I had to watch and even help him use his last strength to get him self onto that scale. I was to young and dumb to yell like your step-father did to leave a family at peace. It still haunts me. Be so glad for the morphine. The morphine doesn't just ease the pain it allows them to go quicker and quieter. It brings peace quicker to all involved. I'm so glad she didn't suffer for long.

Fuck their god, and fuck them too.
197
I believe there is nothing in the bible forbidding suicide. I believe suicide was made a sin in order to assist religious oppression: if you did not believe Roman Catholic dogma, you could be horribly murdered; and for many freethinkers, would have been preferable to first, torture, second, burning to death at the stake. So by threatening them a continuation of agony for all eternity, the church denied them that escape.
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I don't know if it helps in any way at all, but when I was younger I had jaw surgery. It hurt. I was put on a drip that let me add a little bit of morphine to my IV every fifteen minutes if I needed it.

I'd try to tough it out, but then I'd punch the little button and within a few seconds, at most: no pain, just a feeling like I was floating.

Morphine is the good stuff.
199
Jeffrey and Elsie: Everything is a slippery slope to somewhere. If the initiative is passed, yes, it's possible that some bad law will be passed after that. What you seem to preserve is some automatic system that spares you the obligation of citizenship, which is to pay attention to what lawmakers and hospitals are doing.

But we don't have that now as it is. No automatic system. We the people have to shoulder our responsibilities as watchdogs. That doesn't change is the initiative passes.

You talk about Holland. But what the hell do you know? Have you been to Holland? Have you talked to Dutch people? Just where do you get your information? What evidence is there that patients are being killed against their will?
200
Dan,
Many thanks for sharing your story so eloquently. While I'm sympathetic to the story having lived through the same situation with my beloved mother, I must comment that the idealogy behing your argument remains sound and just and DO-able! Our society is truly intact enough to accomodate this relatively new choice without abusing it. I urge all readers to trust that they and their families will find comfort and empowerment with a law that reflects our abilities to live and end our lives with as many choices as God has given us.
201
What a beautiful and well-stated piece. It comforts me at several levels -- the memory of dealing with my own mother's death; the way I responded to a relative just last night who is so sure her God has the answers that she wants to impose them on the rest of the world. Thank you.
202
Thank you for the article. It made me cry. We should all have a choice.
203
well. i just started crying in class.
204
Dear Dan,

Thank you for putting yourself out there to share this with all of us. Reliving it can't have been easy, but hopefully it will help others understand better.

You and your family have the support of all of us out here in Reader-land during this tough time.

Heather
206
Jeffrey,

I sympathize with your fears. As a feminist, it bothers me immensely that in places where assisted suicide is legal, women take advantage of it more often than men do; in our society, women are still taught that their worth lies in caring for others, and they seem more likely to end their lives rather than risk being a "burden" on those whom they are supposed to be taking care of. But to me, that's no reason to oppose I-1000; quite the contrary. As a feminist, I oppose the social norms that value women's lives only when they are of a particular kind of "use," AND the idea that government has a right to dictate how I die. I'm interested in a society that encourages women to value their own lives as much as it encourages men to do so. I have no interest at all in one that devalues women's lives and then forces them to live out the final moments of those lives feeling guilty about the toll it takes on their loved ones.

The answer to discrimination, against women or against the disabled, is to fight against the twisted ideas about the value of some lives over others that lie behind it, not to hand over to the state the final decision on whether any individual's life is worth their living.
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Dan, I am so sorry.
Thank you for writing this.