Euthanasia

[Athena]

I don't want to make anyone feel depressed or negative in any way but in terms of my personal situation being in CKD, the only thing that makes me feel more at peace about the future is the option of euthanasia, when the time is right. It's quite remarkable how much this gives me instant peace of mind. The thought of being on dialysis is just too grim a prospect and part of why it's so unfeasible for me is that I am very much alone in this world. The price of being totally on one's own is that there is just less reason to struggle until some bitter end to survive. I've been battling for years now and with the addition of kidney failure and possible deafness, it all seems pointless.

One of my favourite pastimes is to watch movies at the cinema but I've noticed that I now cannot catch everything that's said. I am very noise sensitive and most social venues are too noisy and loud for me. I also have diabetic retinopathy and while that is being extremely well managed, I also have the fear of going blind one day.

I am still healthy and energetic and for that I am grateful. People are kind enough to me wherever I go and I did meet an extraordinarily kind ENT specialist today. But I can't survive on the kindness of medical strangers when the going really gets tough. I do have family and friends who care for me but I don't want to become dependent on anyone. When we become dependent on someone, that's when resentment and disenchantment towards the vulnerable one sets in.

In past war times, the best that loved ones did for each other is to give them a gun should they ever be captured by a cruel enemy. ESRD is the cruel enemy as far as I am concerned. Ending it peacefully and sanely is the only thing that makes me feel at peace. (Besides, telling my Nephs where they can stick their final solution, of course!). There is lots to do and many more worthy battles ahead but knowing that I can peacefully end my life when the time is right, gives me so much more peace than imagining that I will cope well on dialysis.

[Simon Dog]

Very well said.

I am doing well on dialysis and enjoying life, however, it is comforting to know that every day is my choice to live, not that of the government or papists (who successfully organized defeat of the right to die ballot initiative in my home state of MA).    The extra "edge" dialysis patients have is that we have the legal right to discontinue treatment any time we wish, and the government cannot use force to deny us that right, or force us to die without family present.

One does not need to be depressed, or doing poorly on dialysis, to be comforted by having the ultimate choice.

[racko]

Athena, you are not alone with these thoughts. I feel the same way.

[casper2636]

Aehena, I , too, find solace in the knowledge that I have the option to "opt out" at any time. I guess, in this one respect, we are lucky (imagine that!) that WE have the control and the ball is in our court. Every day that I go to dialysis, I am making the active choice to do so...for now. I consider my options every day and have decided just to take it One Day At A Time because, maybe tomorrow will have something better in store for me. I try to find something beautiful in each day to keep going, just something small to make me smile. I hear Scarlette in my head saying "Tomorrow is another day" and the music.....for now.

[cattlekid]

I've been pro-euthanasia for years.  I participated on my high school's speech & debate team and the speech I performed all year long was pro-euthanasia, and this was (*ahem*) years ago.

I never understood why this option was available for our pets and not for ourselves. 

[Michael Murphy]

I am happy to be alive,  even on dialysis I find much joy in life. But I watched my parents both have bad deaths.  I draw great comforting the fact that I control my own life and my own death.  As long as I enjoy my life I will attend dialysis.  It's only 18 hours of my life each week.  That leaves 150 hours of me time.  It's no worse then going to work.

[Simon Dog]

I never understood why this option was available for our pets and not for ourselves. 

Papists

[Athena]

Thank you everyone for your replies. I'm so glad to find that most people see eye to eye on this subject. I understand that it can be controversial for some people. However, anyone who's watched a loved one or friend go through unimaginable suffering due to disease without there being any hope for a resolution or adequate quality of life afterwards instinctively understand that euthanasia is really about mercy and compassion. And we do treat animals better than fellow humans when it comes to ending pointless unnecessary suffering!

However, let me reaffirm how great it is to be alive and feeling well! Thinking about euthanasia only makes me feel more grateful and passionate about living well in the time that I have left. I don't really like to think about the future, like most people do, but just living day by day and making plans for the forseeable future is enough for me.

 

[Athena]

Aehena, I , too, find solace in the knowledge that I have the option to "opt out" at any time. I guess, in this one respect, we are lucky (imagine that!) that WE have the control and the ball is in our court. Every day that I go to dialysis, I am making the active choice to do so...for now. I consider my options every day and have decided just to take it One Day At A Time because, maybe tomorrow will have something better in store for me. I try to find something beautiful in each day to keep going, just something small to make me smile. I hear Scarlette in my head saying "Tomorrow is another day" and the music.....for now.

Caspar, you really made me smile. I know the scene in that movie very well, I grew up admiring Scarlett. What we grew up with never leaves our memory!

Finding the joy in little things each day is truly all we ever really have to keep us going. That's regardless of whether we even have a medical condition or not. I've rediscovered my love of literature and am reading great novels that keep my mind enthralled. There are so many other things to discover and enjoy. Just having hope for a better new day is sometimes all we need. For instance, I find that if I have a really bad awful day, it's almost like a law in physics that the next day will be better. It usually works out that way.

 

[kristina]

"Euthanasia" can be a difficult one to define, because there have been well known dictatorships
who did (and still do) use "Euthanasia" rather liberally on "uncomfortable subjects/citizens"
who happen to disagree with a particular political system for political/social reasons ...
..."Euthanasia" has also been known where it has been "used" to get earlier to "that inheritance" ...
... And because of all the above mentioned (and there are many more to mention, but these are the most obvious one's),
there are very stiff laws in place to protect people from being "euthanaized" in democratic civilized countries...
(except in Switzerland, where terminally ill people are being helped, as long as they can provide a medical letter to certify
that they are terminally sick, in terrible pain and without any future-life, medically speaking...
... If, however, a person decides to "stop it all" and take their own life, it is still a suicide
and has nothing to do with "Euthanasia" whatsoever, because it is people's own decision to take or not to take their own life ...
That's my  ...

[kristina]

I should also mention here, that sometimes terminally ill Europeans travel to Switzerland for "that particular purpose"
and they are always being checked by not only one doctor to make sure, that they are not only "compos mentis"
but they also have all their mental faculties to decide why they wish to end their life ...

[casper2636]

'Medically and legally and religiously, this is a non-issue. Withdrawal of care is perfectly acceptable across all of those realms. While some may question why someone would withdraw care while doing well, it is certainly a legal, medical and religious right to do so. The cause of death in such an instance would NOT be suicide unless there is evidence independently of suicidal ideation, but instead would be death due to chronic ESRD (End Stage Renal Disease). The only issue from a medical and legal perspective for a provider is to exclude suicidal ideation. If the evaluation suggests that the actions are the result of suicidal ideation, then a court, a deputy or a psychiatrist can hold a patient without their consent and subject them to the therapy that they need to sustain life until they can adequately evaluate and treat the underlying depression that is causing the suicidal thoughts. Where the line between free will and rightful choice and suicidal ideation is at times a bit ambiguous.  But legally, with suicidal ideation excluded in a competent adult, you are allowed to act in such a manner and refuse further medical treatment for any condition.

[Simon Dog]

The cause of death in such an instance would NOT be suicide unless there is evidence independently of suicidal ideation, but instead would be death due to chronic ESRD (End Stage Renal Disease).

The "cause of death" is a legal term, not a plain language statement of what happened.

For example, in countries where euthenasia is allowed for the terminally ill, the legal cause of death is the underlying terminal illness, whereas the actual cause of death the barbituate overdose (or whatever drug is used for the euthenasia).

[Rerun]

I live in Washington State where Euthanasia is supposedly legal.  But, how long would it take for me to tell my Dr. and then get approval and then sign the papers and schedule a date on and on..

If I decide to quit dialysis I'll have a chocolate banana smoothie with a chaser of orange juice the next day.   I don't want to die of excessive fluid.

I just pray I go to sleep one night and He takes me.  That would be really really nice.

But, for now I choose to drag myself to dialysis 3 nights a week.  My choice....

[Simon Dog]

I am not sure of the protocol in WA, but a common approach is to write a lethal Rx for barbituates that the patient keeps at home, so (d)he can choose his own time.

I live in Washington State where Euthanasia is supposedly legal.  But, how long would it take for me to tell my Dr. and then get approval and then sign the papers and schedule a date on and on..

[Athena]

"Euthanasia" can be a difficult one to define, because there have been well known dictatorships
who did (and still do) use "Euthanasia" rather liberally on "uncomfortable subjects/citizens"
who happen to disagree with a particular political system for political/social reasons ...
..."Euthanasia" has also been known where it has been "used" to get earlier to "that inheritance" ...
... And because of all the above mentioned (and there are many more to mention, but these are the most obvious one's),
there are very stiff laws in place to protect people from being "euthanaized" in democratic civilized countries...
(except in Switzerland, where terminally ill people are being helped, as long as they can provide a medical letter to certify
that they are terminally sick, in terrible pain and without any future-life, medically speaking...
... If, however, a person decides to "stop it all" and take their own life, it is still a suicide
and has nothing to do with "Euthanasia" whatsoever, because it is people's own decision to take or not to take their own life ...
That's my  ...

Kristina, thank you for your post. You make some very interesting points. As I, and I imagine most of us on this site, live in a democratic civilized humanistic society where the sanctity of life is respected and held dear as a fundamental value, I do not imagine that it is easy to be assisted in this sort of thing. In fact, in my country euthanasia is still illegal. So it doesn't really happen here as it does in Switzerland.

My support of the principle of euthanasia was formed the hard way. By seeing a dear friend die in agony from cancer about 6 years ago. She died begging for morphine and there was nothing we could do as we stood helplessly by her bedside one very long traumatic night. We did everything we could to make her comfortable but the pain was ferocious and untreatable with normal safe levels of morphine and other painkillers. Her kidneys had failed from all the aggressive chemotherapy she had undergone and she was terribly bloated. Finally after pleading the nurses for ever more morphine, one nurse seemed to kind of relent and she came around to inject, what looked to me, like quite a lot of liquid into her arm. My friend mercifully passed away soon after that injection. She was going to die anyway that night so that injection, if it was indeed a lethal dose, should have been given earlier that day. The sheer agony that she went through alongside her family and friends was indescribable and has left us all traumatised. She needn't have suffered so much in the way that she did.

I also note that after a recent surgical procedure I had where I had general anesthetic, I can certainly vouch that one really feels nothing! The few hours I was out did not have any light at the end of the tunnel kind of dreams or visions. When I came to, it is like the few hours I have lived through did not really happen at all. That is really the most merciful way to end anyone's life, if they are going to die anyway through the most terrible agony.

I firmly believe that anyone who has watched a loved one die the hard way would naturally support euthanasia.

In my particular case, if I were to end my life now, in anticipation of ESRD, I think it would be suicide through depression. I do acknowledge that and can clearly see the difference. As long as I function, have a normal life and can hope for better days ahead (with appropriate medical treatment of course), there is absolutely no reason whatsoever to be dwelling on this topic.

The fact that lately it has been on my mind, really shows that I am in fact suffering from a certain level of depression and this distinction really should be highlighted in any discussion about euthanasia. There is a fine line between suicide and euthanasia. We need to be very careful.

[cassandra]

Dear Athena please go for treatment for your depression, life's tough enough already.

Love, Cas

[Athena]

Thank you Cas for your message. I have sought help with my endocrinologist and I have been given 2 options, antidepressants or the preferred option, hormonal replacement therapy (as I am now officially going through menopause with severe night sweats every night). I am reluctant to take either option due to nasty side effects such as increased risk of cancer, thrombosis. It's a very difficult time.  The way I see it, if I can recognise it for what it is, that is a good way to fight its effects.

[obsidianom]

I don't buy the whole hormone replacement negativity. The studies are so up /down and inconclusive on cancer and other issues.  One year its ok, the next its bad and then back again. This indicates to me it is just not that certain there are really major cancer risks. 
I have my wife on hormone replacement  for 15 years now and she is quite happy with it. She gets depressed when off them. No side effects at all.  the clot risk is mitigated by the kidney disease as kidney disease reduces clotting anyway. For her premarin is a miracle . (estrogen).

[Athena]

I don't buy the whole hormone replacement negativity. The studies are so up /down and inconclusive on cancer and other issues.  One year its ok, the next its bad and then back again. This indicates to me it is just not that certain there are really major cancer risks. 
I have my wife on hormone replacement  for 15 years now and she is quite happy with it. She gets depressed when off them. No side effects at all.  the clot risk is mitigated by the kidney disease as kidney disease reduces clotting anyway. For her premarin is a miracle . (estrogen).

Thank you Obsidianom. It's interesting to get your view on this & your wife's experience. My specialist has told me that apparently HRT via a skin patch is the safest option. It would seem that hormonal issues really can create depression as I recall being this depressed when I was in puberty and then it all just vanished when I was in my early 20s. My doc said that apparently it can only get worse in some women. I've had a life threatening reaction to high oral doses of a progestin drug six months ago, so I am really wary of any contact with hormones. It's a difficult time (any my intake of chocolate and other sweet foods has now become a daily indulgence!).

[Charlie B53]

All things in moderation.  whether it be drugs, hormones, foods, whatever.  Moderation limits side-effects with the exception of allergies.  And even then if the allergy isn't too sever, very small exposure can build a tolerance.  As in snake venom.  Some snake handlers take small daily doses to build an immunity to an actually snake bite.  But I am way off-track here.

Depression.  I don't doubt that ALL dialysis patients experience at least a small amount of depression.  But are capable of controlling it, having learned to deal with their problem and successfully overcome that 'normal depression which accompanies adversity.  If we didn't then I would have to wonder about that person's sanity.

Depression is only a problem when un-controlled.  This is a very real problem for many, whether on dialysis or simply having other problems in life.  Those about the depressed person have now idea, not being trained in recognizing depressive character.

I admit, I have my times, but I live with it, at least having Hope.  And if there was no Hope then ,  well,  I guess I will have to figure that out if and when it happens, cause I don't know.  But I've never claimed to know everything either.  Just a little bit, which is really all anyone can Hope for.  Or at least I think so.

[cassandra]

Lovely Charlie53 you made me smile, as your way of thinking is lovely.

And Athena I was also scared stiffless about HRT, but the 'nice and early' menopause gave me huge problems, and my GP suggested the lowest dose poss of some local HRT (now I don't completely understand how that's poss as it goes into your bloodstream anyway), but I tried it, and it worked definitely with those meno-problems   
I actually never contemplated that HRT might make me less depressed, but might be poss of course and I'm only rarely a bit down, hmm
Anyway it is called Vagifem, and is a pessary which I take regularly. Maybe try that? I'm on 10mcg 3x a week.

Lots of love, hugs, and luck, Cas

 

[Athena]

Depression.  I don't doubt that ALL dialysis patients experience at least a small amount of depression.  But are capable of controlling it, having learned to deal with their problem and successfully overcome that 'normal depression which accompanies adversity.  If we didn't then I would have to wonder about that person's sanity.

Depression is only a problem when un-controlled.  This is a very real problem for many, whether on dialysis or simply having other problems in life.  Those about the depressed person have now idea, not being trained in recognizing depressive character.

I admit, I have my times, but I live with it, at least having Hope.  And if there was no Hope then ,  well,  I guess I will have to figure that out if and when it happens, cause I don't know.  But I've never claimed to know everything either.  Just a little bit, which is really all anyone can Hope for.  Or at least I think so.

Thank you Charlie.

I think that is about the sanest comment I've read in a long time about depression. You've really nailed it in terms of the normal depression that anyone who's facing serious adversity would feel versus 'un-controlled' depression. You're so right - if someone didn't feel depressed in the face of a serious disease, we'd have to wonder about that person's sanity!

Though I've identified some depression in myself due to other causes it seems, I don't want to side-track the topic of euthanasia, which remains an important question. A few people have written that having ESRD contains an escape clause that remains in our control. However from what I am able to gather, exiting on the back of untreated ESRD would NOT be an easy way to leave. There's severe mental cognitive problems, fluid congestion in the lungs and heart and severe malaise, possibly with pain, that would not make it peaceful or comfortable. The most humane way to exit would through an anesthetic/narcotic.

I'm sorry once again if this topic may be upsetting or troubling to anyone.

I am thinking of testing the waters with one of my Nephs when he next brings up renal end-stage treatment, I am thinking of shocking him by telling him that, unless they find a way to keep me off D indefinitely, I intend to refuse D treatment. Who knows? It may spur them to get off their complacent backsides a bit more and advocate for a kidney disease cure. Wouldn't that be a great protest campaign? CKD patients putting the heavy on their Nephs and demanding to be kept off dialysis. That would reach the ears of the public, politicians and the profitable dialysis industry for sure.  I wonder how a Neph will respond to this?

[Katherine]

Hey Athena,
I'm having very similar thoughts lately about declining dialysis when the need arises. I'm somewhere between stage 3-4 right now, too. Although having gone to a kidney support group, and having read positive posts on ihatedialysis leads me to believe that it will still be possible to retain a joy for life, I'm looking at the reality of going through this very alone. And am already exhausted by the nephrologist, renal education and nutritionist visits, carefully watching my diet and taking my blood pressure regularly. I'm depressed. I see a counselor but told her yesterday morning that I wouldn't give up the prescription sleep meds I have in case I need an out. I'm homeless at the end of this month. I'll be couch-surfing at a sister's 70 miles away in Albany, and staying part-time with a friend in Portland. I can't imagine caring for myself as kidney failure ensues when I can no longer even house myself. I'm 53. i know I have to be hormonally affected, too. My life feels way over-run by medical rumination, and I haven't begun the dialysis process yet. I haven't fully decided to remain open to treatment. I looked at the apparatus for peritoneal dialysis at the renal educator's again recently. Although touching the solute bags helped to normalize the idea a bit, it still seems so Frankensteinian to me. I remind myself that people manage while doing this. That they can still lead pretty functional lives. But I've been researching what denying dialysis will mean. It doesn't sound excruciating, but who knows how long I'd languish in a semi-coherent and exhausted state?
I so very much understand how you feel.
I have always had such an appreciation for life. I remind myself that there are beautiful moments left to be enjoyed. And then I'm reminded that my illness has already frightened away most friends and family. I'm not usually one to cop out. In the past I've been vehemently opposed to euthanasia. The 'slippery slope' is just to dangerous. But being faced with this illness makes me re-visit my thoughts on it.
I gave birth to my children at home. All of the focus on procedures and treatment is making me sick. Or maybe it's just the Sensipar side effects.
All I can commit to at this juncture is to continue to stay as healthy as I can, and see how things shake out in the next month.
I hear you. I'm alone in this, too. It's harder than I imagined. Having a hand to hold would help.
Know that I'm with you in solidarity. As I face the uncertainty of my future and work hard to make the best decisions for myself, I am strengthened by your courage to share your feelings so honestly. And I'm reminded that no matter what stage in this process I am at, hearing a clear, thoughtful and intelligent voice like yours helps me feel supported. Reading your posts make a difference in my life, Athena.

[Athena]

Dear Katherine
I was very touched by your post. Thank you so much for your positive feedback. I was beginning to think that my existential angst rants might be becoming a bit jarring to fellow sufferers. I'm glad to hear that they are having the opposite effect on some people who are in an identical position to myself 

We certainly are in troubled times and it there is no prospect of our problems just vanishing. What each one of us has to do is to work out a Survival Plan. And keep our expectations about what to expect in life & from others within realistic boundaries. One of the hardest things that I've encountered so far is how easy it is for our disease to distance ourselves from family and friends. No one really can understand how it's to walk in the shoes of a kidney disease sufferer, no matter how much they try (and not many people can try too hard as everyone has enough of their own problems to deal with). Being homeless puts anyone in a very difficult and vulnerable position. I am glad to hear that you have a sister to rely on as well as a friend but please be careful in how you manage your relationships with them as legally no one is obliged to give you a roof over your head. Keep yourself light, friendly and personally 'user-friendly' with others as much as possible. No one wants to deal with a nervous wreck or a "negative" person. Everyone is too hooked on enjoying their lives as much as possible in a rather narcissistic self-absorbed way to care too much about anyone who could be dying.

You can observe this phenomenon with our good old renal physicians. Observe how burdened they are about seeing a patient moving steadily towards ESRD and let that be your guide about humanity in general. 

I've even written to Neph 1 in the past to inform him that I don't just want a "rising serum creatinine cheerleader" for a doctor!  Just when I thought he might finally fire me, he called me to tell him off in a very emphatic way and insisted that I receive excellent treatment from him. That was fun, I have to say. And I have received so much more from him after this incident than if I had kept myself demurely quiet and politely humble.

Try to get as much out of your doctors as possible, as depressing as it may feel, is my message. I don't believe these guys do enough for us and they probably know it. So I think we have room to kick butt, if you know what I mean. Fighting for our health can feel very empowering as well and it's certainly what any kidney patient needs to feel more of. Ask questions, demand answers on how to feel better. Good luck and let us know how you go.