Monday, September 13, 2010


I don't talk about Euthanasia, in order to set trends. I just want to plan a solid exit. You know, DIE.

But it seems if you have a disability, then that is political. Someone with MS arguing they have no quality of life is harder to take than someone with ALS (though Stephen Hawking just put out ANOTHER book, and he has it – but then he is the ‘good’ exception, but we don’t allow for other diseases to have ‘bad’ exceptions?).

I have noticed, as my grandparents were put into a morphine drip coma due to their children talking about pain control (VIHA is trying to get me into the palliative three month unit and I can’t morphine but tell someone that a 90 year old is in extreme pain….morphine ahoy!) and got prescriptions administered without even a doctor’s exam, just a phone call to a doctor, chart change and whee!, 10 days to death or less!

Not old enough to die young?

I am interested in Euthanasia as just that, a deliberate thoughtful choice to terminate life. Again I shouldn’t have moved I suppose as it is okay in some states, other countries but not here (unless you are a senior citizen – oh wait until the baby boomers get to be 70 – I think that policy might change). I have read the accounts of terminal hospitals, of the massive under-funding, and how as it is put in ‘Dancing with Mr. D.’: They just paid 50 million dollars for a machine to tell one type of cancer cell for another in the main hospital but here, in the palliative hospital, we don’t have enough staff so that your spouse does not lie in their own feces, regardless of how important they USED to be.

There isn’t funding for dying. There isn’t staff. There isn’t focus. Just because there is no choice doesn’t make you live forever, honest.

I appreciate that I and several other who read here fall into the category of “Oh my GOD, if I ever get like that, kill me!”

Once I lose the function to get the kind of ingredients to ensure a speedy death, or mix them up, then it is Euthanasia, before that it is just ‘suicide’. However, since countries which do it regularly know how to do it, they have you drink the drink, and less than an hour later you are dead. Is it a sin? Compared to what? How about lying in a bed, screaming obscenities in hopes that God is offended and kills you as one elderly lady woman I saw and sat with did? Or am I supposed to stay alive for a ‘political cause’ – which is odd as no one seemed to mind all the farmers walking into sheds during horse and mouth and pulling shotgun triggers.

No doctor, no effective pain control, no organization or individual wants to take responsibility. I do. I want to be responsible for my life and death. But I can’t. Not once I get too weak.

‘Act Now!’ – should I go boxing to ensure I have the strength to mix up those pills? To grind them and drink them? I have always believed that Euthanasia should be allowed as a choice. However, if the person is experiencing emotional or physical suffering that CAN be relieved, to be driven to a place where death seems the only reasonable alternative says a great deal about that society. And for those who want to ‘will to power’, it is hard to ‘pull yourself up by your bootstraps’ if you can’t lift them, or the boots.

So what about it, Euthanasia as a reasonable option? Or the nice name: Suicide, before I become too weak.

My heart stopped last night, and my breathing: they both slowed and stopped. But then they started again. Curse it.

Look to Linda.


Veralidaine said...

As your cousin and friend I say no, no, no, no, no, I have seen you like this before and since then there has always been at least one other post or email where you seem happy before the next episode like this. My worst fear for you is that you make a choice like suicide out of fear and depression and pain, and not because you are ready.

One of the many ways life has absolutely cheated you is by giving you both depression AND a terminal, painful, degenerative disease. How are you supposed to know the difference between wanting to die because you are someone who suffers with depression, that being the kind of suicide I feel should always be prevented if at all possible, and wanting to die because you are ready to exit with some control and choice before you get to the point where strangers will be guessing what you "would have wanted" because you can't communicate anymore.

I'm scared for you, I love you very much, I'm thinking of you and Linda every day, and I hope this is not the end.

Lorna, Bob and Liam said...

Beth - what are you asking us about? Our opinions on euthanasia? And what do you mean by "Look to Linda?" It's hard to know what to answer when I don't quite understand what you want.

Having said that... I support legalised euthanasia as a choice. I support it in the event that the individual can carry out her own wishes, and also in the event that she has, in some form, made her wishes to die known even if she cannot carry out the administration of the drugs.

What I don't support is a health care system that makes palliative care such a poor choice that euthanasia is the only PREFERABLE choice. For some folks, appropriate end-of-life care can mean allowing nature to take its course while providing needed support, including sufficient pain control. People shouldn't feel they have to kill themselves because the alternative is as you described, dying in pain and under inadequate care.

Is the palliative care option in Victoria that bad? I know nothing about it, and certainly have read about (in particular, privatised) care homes being pretty awful, but I was not aware that the palliative options in Victoria were that inadequate. I thought one of the advantages to palliative was getting appropriate pain control - you seem to be saying you've already been told you are not going to get that. Why is that? Is it because you still don't have a primary GP?

Sorry, you probably don't need all these questions, but I'd like to help and I don't know how without getting all the facts.

What can we do for you - that is tangible and practical? We always hold you in our hearts, and witness your living... but are there more tangible things we could be doing?

Elizabeth McClung said...

veralidaine: Yes, it is hard to eliminate mitigating factors: loss of control, pain, frustration, no insurance, looming loss of medication, no GP in over a year, no counselling, the usual fun stuff.

I cannot allow myself the luxury of a mental illness, which must in itself create some unusual echo's inside, because depression will compromise survival, being despondant will compromise survival. However, there is a large gap between a ruptured intestine due to impaction and subsequent infection death and a planned death - yet one simply takes, no inaction, but the failure to daily take action, hours of action, the same with lungs, the same with the liver, the kidney, the drinking of a gallon of water a day to take the strain off of them, as I can't sweat, to eliminate toxins in the blood. Two days off, and I have a fever.

A living will's list of 'heroic actions' to be taken or not are all standard life already - ambi-bag, check - done weekly, heart stabilization - check, brain damage - check, inability to move or communicate - check and double check.

There is something wrong when Canada will fund medicines costing tens of thousands for maintaining a 'normal' life, but not pay for care, or counselling, or even pain medication if they is no long or short term hope.

Elizabeth McClung said...

Lorna, Bob: One way or another Linda has to deal with it, the living mess or the dead one. If I quit and let 'nature' take course, then Linda will make the decisions as I spiral into destability.

Linda called one of the three doctors on the 'taking patients', one only took patients over 55, the receptionist of the other two said that since their wait list was now over 1,000 - a thousand people WAITING on a list in case a patient leaves or dies to get a GP, they were not adding any more. Those are the current available doctors.

Is pallative care that bad: Yes. You cannot get into pallative care unless a doctor recommends you, and takes charge of your care, except there is a GP emergency. The walk in I go, after I have been 'taken on' as a patient twice, (taken on Wednesday, then dropped on Friday afternoon when the owner arrives from his practice in Vancouver) and dropped twice, no paperwork is allowed on me, unlike other walk in patients. All paperwork is destroyed, all test results, so that none of the doctors are tempted to TREAT me, so I don't have maintanance treatment, or even new symptoms/system failure follow up because - the records are destroyed to avoid that from occuring (don't get attached to the goldfish!). So, no change in medication, no new test, while the disease degenerates, no change in treatment in the last 2.5 years. And now, no insurance means no way to get equipment, to get pain medication, to get anything on programs, all of which need a doctor's signiture.

The pallative program, which states you can register if in your last three years, says on the phone, 'don't contact us until your doctor can PROMISE you will die in 90 days or less' - cut backs have turned a brutal situation into one even more brutal. Too ill to go to appointments, at least I have Linda, others have no one, no hope, no relief to pain.

In order to get confirmed pain control you need a) a GP and b) a GP who has read an article in the last 10 years. There are fentynal patches which offer a trickle, so they can work for people who are chronic, to pallative - perfect for people like me who 1) don't digest evenly, making pills ineffective 2) have degeneration and higher pain levels and 3) can be altered frequently without having to add or break in new meds. But that requires a 'triplicate' form, which many doctors won't use, simply because all triplicate forms get registered with the college, and doctors can abuse and choose, as long as they DON'T LEAVE A PAPER TRAIL. Others are opposed to pain killers, but then don't see pallative patients - because the number of young pallative non-cancer patients (no problem getting drugs in oncology) in Victoria is minimal.

Also, with a rare disease, no one has documentation of standard progression, except maybe Bethesda, and that is not 'valid data' BC health will take. So a GP giving a triplicate pain killer means they can't "justify the use" regardless if all the people who work with the patient, see them, care for them, even the doctor sees how obvious it is....if you can get off the 1,000 person wait list.

If I am put in a home, that is an automatic 'forced seperation' which nullifies the marriage Linda and I have - and then, her financial position improves and the director or care worker at the home, without medical training or even my medical file will make pain medication determinations, while I meet my new 92 year old, and 84 year old roommate (this is how the province can FORCE a married couple to live in different facilities, as once they are in a facility, thanks to the law, they aren't married - that 50 years together means nothing, no way to visit or communicate). My parents worked hard to get my grandmother in the best facility the government offers, but that is seniors only and I don't think they will move back for another three months of telephone tag and round robin pleading.

wendryn said...

I have a lot of mixed feelings on this, but mostly what it comes down to, as with most many things in my life, is that I want to have a choice. I don't want other people making my decisions in something like this, and I especially don't want them legislating it.

I know that you've thought about this before, and I know it means you are in a really hard place. I wish I knew what to say more eloquently, but since I don't, all I can say is that I love you and support you and hope you keep boxing, no matter the reason, because that brings you a certain joy.


cheryl g said...

The healthcare system of BC desperately needs an overhaul. Not putting funding into palliative care is horrible. At some point those who are deciding not to fund palliative care will be in need of it.

The thing BC seems to lack in its healthcare system is compassion and empathy. In all the doctor's appointments I have accompanied you on I have never seen a doctor display compassion, let alone seem to care about meeting your needs. The same holds true for VIHA.

I don't know the answers though I have thought about it a lot.

Raccoon said...

In the states, if you attempt suicide and failed, you get arrested.

Back the first couple years after my accident, I thought about suicide. But I've got this strange streak running through me: one of my attendance would end up with the guilt of "what could I have done to stop it?"

That was Depression, though. I don't know what I'd do about pain.

I think it's Switzerland where people in Great Britain go. And in the states, I'm not sure if it's Washington or Oregon.

SharonMV said...

Dear Beth,
I'm so sorry that you are, as ever, not getting your medical needs met. I know if you had better pain control, that one thing alone, would make life better for you. And now, they are burning your paperwork? Are you on some kind of blacklist because you dared ask for help?
Palliative care for those who are dying or those who struggle with painful chronic illnesses is so important. I am so grateful that I have a good doctor & that I get adequate treatment for pain. Yes, I'm still in pain every day, but it is tolerable. It would be hard to keep on going if I had to deal with all the pain every day.

Being someone who has a rare disease is hard too. Even the experts who know something, definitely do not know enough. My CVID is being under treated because the expert I saw last March "doesn't give doses" as high as I had been getting. So I'm getting more and worse infections. Every illness means I must increase the steroid I am taking to replace what my failed adrenal glands no longer supply, which in turn causes my blood sugar to go too high, so I must take additional diabetes medicine. And of course my Lupus flares which leads to more pain & illness. But I have my primary doctor who helps me deal with all the pain & infections & other symptoms. And now, my endocrinologist is starting to realize that my case is complicated & seems willing to help. If somehow, I can gather enough energy & concentration to wrangle these doctors into considering me, the whole patient, I might be able to make some progress.

Not to go on about myself, I just wanted to illustrate to your readers how difficult it is to get help even when you have insurance, doctors who are willing to treat you and medications. My heart sinks when I think of you without even one doctor to help you. Even in the case of such a rare disease, your pain should be addressed properly and you other medical needs too. And I can't imagine how dear Linda deals with it either. So very hard on both of you.

As for the issue of Euthanasia, I think people should have that option. But it should be a choice, not something one is driven to for lack of medical or mental health care.

I know it is so hard for you, Beth to keep on fighting every day. To live with the pain & illness. To do the many things you have to do every day to keep on going. It's hard for me to make sure I brush my teeth each day. And to live each day knowing what complications could happen. You have a fighting spirit. I hope your body will keep fighting too. I love you. I want you to be here. I want you & Linda to have more days together.


Neil said...

Like Veralidaine, I worry about you being depressed and making a poor choice.

On the other hand, you seem to be at a semi-permanent 'end-stage,' where death might be preferable to the next few months of pain.

I agree with you about euthanasia; it should be easier to die with dignity.

Saskatchewan's health department put out a brochure one year that proudly exclaimed how many more jobs they were providing. There were something like 2% fewer doctors, 5% more nurses, and 15% more administrative staff.

The hospital where my kidney specialist hangs out had three administrators when he started practicing; now there are more administrators than there are doctors. Something's wrong when the administration of healthcare costs more than the care itself.

Hug Linda for me, please. She's truly a wonderful wife.

Love and zen hugs,

tinarussell said...

It’s Oregon. I know, ’cause I live here... I think Washington might have passed a similar law recently, too.

I guess I don’t have much else to say... it’s your choice, Beth, and though we love reading your words and having you among the living, it’s not your obligation. But, we’ll help you stay around as long as you can if that’s what you want, too.

rachelcreative said...

I support the right to die. By your own hand or by your own wish.

But I too recognise that legalised euthanasia admist a messed up system of care for the dying, sick and elderly could mean many choose to die when they could have good lives if the system was sorted.

But truth is the system is not sorted or accessible to all. Is that a reason to deny the choice I wonder.

For someone in your position with frequent seizures, heart stopping, breathing stopping and so on I wonder if the ability to die (once you can't do that by your own hand) is for Linda to simply not try to rescuitate (sp?) you? That is to say doing so wouldn't be illegal and you could both know that Linda would be protected from any legal wrongdoing if you were allowed to stay not breathing rather (by your request) than given a lethal cocktail to drink prepared by someone else.

As for the practical realism of such a thing I can't imagine and I'm not urging you one way or another. But I think denying people the right to die and offering them little alternative but to continue living in the circumstances that lead them to want to die - well it seems cruel and wrong to me.

Elizabeth McClung said...

Rachelcreative: That is something that Linda wrestles with, when I am begging her not to bring me back - the kind of pain is like being on a winch and cranked down into boiling water - it REALLY hurts when your heart stops, or goes backward, or has both sides fighting it out, and the lungs hurting, and to be taken to the depth and yanked back not once but 5 or 6 or 8 or 10 times.

"Who.." Linda wonders, "is asking, Beth, or 'Tortured Beth' since with enough pain you will say and ask anything." Is she doing me a favor or a disservice, she wonders. I dunno. If the social/medical stressors were removed and there was just the degeneration of major organs and pain, then I could make a decision, which is what Euthenasia is about to me: making a decision, not 'I'll die this afternoon' but 'Okay, it is time to start setting a date'. To allow us to talk about death.

I agree, it seems cruel to me. I have never asked anyone to maintain my level of will or action (there is a difference between: "You can change the life before you" and "Come run with me until our bodies cannibalize our muscles and we start bleeding internally". It is the same with Euthenasia, I certainly am not going to set standards on 'how much' pain and suffering before it becomes extended cruelty.

The most common experience in pallative hospitals is for family members to beg/blackmail/threaten doctors to speed death because the person is suffering. But by that point, the person isn't, it is just death is so alienated, and so prolonged and emotionally wretching that the relatives watching would rather kill the relative they have come to 'support' than have to deal with seeing the extended suffering (even when the person is in a death coma and feels nothing).

Elizabeth McClung said...

Neil: The NHS had the same problem, at one point it was 10 administrators per doctor - the bloat was so bad. The money going in every year was more but it wasn't producing any more services.

SharonMV: No, I'm not blacklisted, just there are only 1-5 of each specialist if you are fortunate, none in two of the specializations I need, and no GP's - without a GP to sign the forms, you can't move forward, you can't even get the 'exception' drugs.

Tina: Shasta soda, Shakespeare festival and Euthanasia - and no sales tax, go Oregon!

Thanks for speaking on something that is too touchy.

I CAN live for a lot longer, maybe, but it will only get significant worse. That's just what is, I thought it was an endurance before, but now, it is AN ENDURANCE!

Baba Yaga said...

Ugh. I have bits of response to this, but nothing I have time-and-energy to make coherent. Except this: that if I knew how, I'd ensure you proper palliation last week, or several months ago; as everyone who needs it and is denied it for manifold absurd reasons and unreasons.

& not just palliation, but 'care' which involves actually caring.

I do despise the thinking that physical illness is a legitimate reason, just because it's physical, but mental illness never can be, just because it's mental. Or that one kind of pain distorts thinking but the other somehow doesn't. Yet torture is torture, is it not?

SharonMV said...

Dear Beth, I do so wish that the absurd system which denies you proper pain relief could be circumvented,or broken. So the walk-ins or clinics where you have gone don't keep a record of you, so that no doctor there might have to take you on as a patient? There ought to be some kind of back-up for people who don't have a GP. It is bad that the people who are sickest and suffering have to use their time & energy trying to get medical care. It breaks my heart for all those who have to fight so hard to get the care they need and often are entitled to. And it makes me angry. I've been to that point where you just have to let it go, because you are to sick to fight anymore. But when it is a fight for my life, then I have to go on somehow. If I ever get well enough and strong enough, I hope to do something, even a small something to help people in that battle. Maybe I can fight with words as you have taught me. And with stubborness - I was born with that but have learned more from you.

You and Linda should have everything you need, including medical care & daily living needs, to help you through this time. You'd think our society ought to be advance enough to do this. I'm glad that at least through all your friends you are receiving help and some small comforts.