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RE: a good death - 5/17/2007 11:40:53 PM   
maybemaybenot


Posts: 2817
Joined: 9/22/2005
Status: offline
quote:

ORIGINAL: LadyEllen


So, would you prefer to have an assisted death at your request should you be terminally ill? Or would you prefer to suffer a prolonged death in pain?



Neither.  These are not the only two choices when it comes to a terminal illness. My personal choice would be a dignified, pain free death. This is quite possible with the right care and the right health care practitioners. A dignified, pain free or minimal pain death may have what they call a " double effect" and that is quite acceptable to me. Double effect basically means that the medication/treatments primary intention is to ease pain/symptoms, but that in the course of relieveing symptoms a secondary effect < death> may occur or be hastened.
Double effect:
http://www.mywhatever.com/cifwriter/library/eperc/fastfact/ff08.html

I am quite frimly against physician assisted suicide for many reason. If, however, some one choses to end their own life due to terminal illness, I respect that choice.
The ramifications and debate over physician assited suicide is too vast to discuss here  < for me>, but let me share a report with you all that may show you the direction physician assisted suicide has taken in the pioneer country of assisted suicide: Holland. The report is a few years old, but things haven't changed, only gotten broader and many original supporters are changing their minds.
http://www.internationaltaskforce.org/fctholl.htm

One of the many followup to this report:

http://www.internationaltaskforce.org/iua24.htm#47
Dutch euthanasia doctors having second thoughts
   According to a recent Dutch newspaper article, doctors who were "the vanguard of the euthanasia practice" are now regretting earlier decisions to euthanize patients. These are not just ordinary doctors. These are the specially trained euthanasia consultants who give the second opinions required by law before patients’ lives are terminated.
At a recent gathering of these consultants, family doctor Joke Groen-Evers announced, "Look here, I have a statement to make. When I started on euthanasia, I got hold of the wrong end of the stick. So I am going to stop as a euthanasia counselor. I cannot in all conscience accept the responsibility any longer. The law requires us to explore all avenues before we give euthanasia. But I see now that this happens only too infrequently."
Most of the euthanasia consultants who were present indicated agreement. "Ignorance and lack of awareness have caused people to be flushed into the euthanasia procedure to whom a whole lot of life quality could be offered," said Dr. Ruben S. Van Coevorden.
"When one has been so intently focused on euthanasia, one develops a blind spot for other possibilities," commented Dr. Willem Budde. "There are some who died through euthanasia that now make me realize that, with my present knowledge, things would have gone a very different way."
They all agreed that little was known about pain and symptom control (palliation) in the Netherlands. Euthanasia had become THE solution to patient suffering. As a result, there were very few hospice programs compared to other countries..
But now, family doctors have started working in "palliation peer groups." There are 25 such groups, each with more than 130 doctors.
"It seems as if among family doctors a counter-movement against euthanasia is forming," said Dr. Bernardina Wanrooij, who provides all the peer groups with material on palliative care.
"[Euthanasia] is not really necessary any longer at all," explained Dr. Van Coevorden. "Patients let themselves be influenced far more than their physicians realize. You mention euthanasia, they ask for it. And if you mention palliative care, that’s what is going to be." She used to perform euthanasia twice a year. "Over the past three years," she added, "I have had requests for euthanasia, but, thanks to my knowledge of palliative care, I have not had to give euthanasia once."
These days Dr. Van Coevorden tells patients, "I respect your wish for euthanasia, but would you allow me to alleviate your pain first?" "And very often nothing ever comes of the euthanasia," she added.
"I do not mean to seem proud, but palliative care gives me back the confidence that had been much on the wane of late." said Dr. Budde. "It is a way of saying no to a demand for euthanasia. To say no, and yet have something to offer."
Budde remembers the beginning years of euthanasia. "There you were, out on the streets with your euthanasia bag; it hàd something: a mixture of caring and power. But that vanguard feeling has certainly gone now." "Maybe it has to do with one’s age," Budde explained. "I am fifty-three now: Then you begin having other thoughts about death. Would I want euthanasia? No." [Oostveen, "Regrets: Champions of euthanasia practice are having second thoughts," NRC Handelsblad, 11/10/01. Translated.]

                                 mbmbn

< Message edited by maybemaybenot -- 5/17/2007 11:41:19 PM >

(in reply to LadyEllen)
Profile   Post #: 21
RE: a good death - 5/18/2007 2:08:16 AM   
Guilty1974


Posts: 467
Joined: 11/2/2005
From: Den Haag
Status: offline 		Fortunately, euthanasia is, under circumstances, legal down here. It's still a crime, but if doctors follow the official protocol (including informing the authorities), no prosecution will take place. An arrangement that, imho, works remarkably well to prevent unnecessary suffering while at the same time not making it the norm.

(in reply to Sinergy)
Profile   Post #: 22
RE: a good death - 5/18/2007 5:48:16 AM   
adoracat


Posts: 1779
Joined: 2/16/2007
Status: offline 		this is still fresh to my mind.  my LordFallcon passed of cancer in december, and my grandmother last month.

when he went....he wasnt always with adequate pain relief.  that was HARD to watch, and i got up in the face of a couple of doctors on his behalf.  if you see a patient is getting adequate pain relief, do NOT go cutting his pain meds!  he was a late stage alcoholic before he quit, his tolerance for meds was high.  he needed larger dosages.  and once he was comfortable, and the cancer was proven greater than he could fight any longer, he chose to let nature take its course.  he died less than 2 weeks later. 

with my grandmother, they werent giving her adequate pain relief...till she entered hospice.  once they did control her pain (caused by being physically so tiny she had no padding and fighting parkinson's disease) she went quietly in her sleep a week or so later.  she was 94, it was time.

a good death is a harder thing to accomplish than not.

kitten, who hopes she is able to have that.

(in reply to Guilty1974)
Profile   Post #: 23
RE: a good death - 5/18/2007 6:48:39 AM   
cjenny


Posts: 1736
Joined: 11/27/2006
Status: offline 		Five years ago my sis-in-law became seriously ill. It took two states and four hospitals to get the real diagnosis which was 'pulmonary fibrosis' , I had to badger one of the doctors for nearly a week just to get those words. Her chart was kept at the nurses station.
He did not explain the disease instead he sort of danced around it all so when I got home I Googled it. It was a fatal diagnosis and the timeline given from the site was approximately one year. My SIL begged me to tell her the truth so I did.
I was the one that had to tell her she was dying, I had to tell her family and actually prove it to them via literature. Man.. they hated me for it, not my SIL but her family detested me for being the bearer of that news.
SIL and I spent the next month getting all of her paperwork together, writing a will and making an executor. The doctors still would not confirm that she was dying.
Less than forty days after I researched her condition she died.

Later I found out that it is not at all unusual for a doctor to not tell a patient they are dying.
They often don't give the proper pain medication even for a dying person for fear of addiction. Egads. Who cares if you get addicted?

SIL had just enough time to call old friends, to do some important things mostly coming to terms with what was happening. She decided what she wanted done 'after' which I really do think helped ease her mind some.

I'm still angry over the whole thing, how dare they not tell her even when she asked them. She might not have had the chance to say goodbye to friends and family, not the chance to do a will and her DNR.

The day she died I was visiting her. Kathleen asked me to move her side table closer. Her side table held all of her medication.
At this point she had severe problems breathing. PF means that her lungs were literally hardening. Gods the pain was hideous and non-ending. Eventually the lungs would simply stop expanding and freeze solid.
So I moved her table closer, hugged her goodnight and went home. She died that night & much of her medication was gone... empty bottles. Around midnight my mom-in-law called "Jennifer I can't wake Kathleen up". I grabbed those so her family would not know she chose to die on her schedule (religious family, non religious SIL).
She was 51.
She gave herself a good death.
Her family still hates me lol but I don't care, letting her know the truth was and is much more important.
Wow this was kinda hard to write. I'm sorry if it is jumbled but I've never written this out.

_____________________________

*Unless I cite a source it is MO.


~ ssssh. i think i've just found freedom. ~

(in reply to adoracat)
Profile   Post #: 24
RE: a good death - 5/18/2007 9:06:42 AM   
maybemaybenot


Posts: 2817
Joined: 9/22/2005
Status: offline 		adoracat and cjenny's stories are far too common. All three of these cases should have been referred to hospice or a palliative care specialist. And therein lies a big part of the problem and why so many people favor and support euthanasia: Fear of dying in pain, fear of dying without human dignity.
Unfortunately, end of life care is generally poor without these services. Death is a topic many healthcare professionals will skirt around. Most MDs are not trained or even educated in pain control. Hospice is one of the most underutilized Medicare benefits in this country, and it's free ! Most HMOs and commercial insurances have hospice provisions, again, underutilized. The general thought among a vast majority of MDs is Hospice is for the last week, perhaps last days of life. The guidelines for hospice services is this: given the normal course of the disease, the expected life expectancy is 6 months or less. Now many people come on service and live longer than 6 months, maybe 8, maybe 12.
As a hospice nurse it is very frustrating when I get a patient who is in the last week of life. Most often the MD has been trying to treat the patients symptoms  and has failed miseraby. So I get a patient who has out of control pain or shortness of breath or other ugly symptoms. Yes, within a day or two I will be able to make this patient comfortable, but they have already suffered for God knows how long before hospice is asked to step in. Hence the family walks away thinking that disease X is horrible and the psychological impact on loved ones can be pretty strong, in a negative way.
OTOH, if I get a patient whose MD is savvy and refers the patient at the onset of the decline, the symptoms are well  controlled  throughout the dying process. It is much easier to manage syptoms from the onset of symptom, than to wait until it is so unbearabale it takes days for the RIGHT medicines to catch up with the person.
Sadly, even in this day and age of great drug regimes and availability of good pain control it isn't being offered. My advice to those with loved ones who have a terminal disease is seek hospice and or palliative care. Tell your MD that this is the road you want to take. if he says your loved one isn't ready or it is too soon, call your local hospice on your own and ask them for a screen. Most MDs have no clue as to what the criteria for hospice is.  Terminal isn't just cancer, it is cardiac disease, MS, ALS, kidney disease, pulmonary disease, neurological disease and  so many other things.
I am not saying that every patients I have cared fors symptoms could be controlled. Most yes, but there is a small percentage who despite every effort of their hospice ot palliative care teams best efforts do not respond. That is when we have a discussion with the patient and family about palliative or terminal sedation. Some accept it, some do not.

It's a sad statement, but I believe that the rise in call for legalization of euthanasia is due to inadequate and inept MDs/healthcare providers. When in reality it is their job to promote dignity and comfort. They have failed and the public outcry is basically : Don't leave us in your hands, I would rather die. So kill me instead of treating me as a dying person with rights to a dignified and comfortable death and competant healthcare providers. And many may disagree with me, but being killed is not dignified, IMO.

                   mbmbn

_____________________________

Tolerance of evil is suicide.- NYC Firefighter

When tolerance is not reciprocated, tolerance becomes surrender.

(in reply to cjenny)
Profile   Post #: 25
RE: a good death - 5/19/2007 1:45:45 AM   
Sinergy


Posts: 9383
Joined: 4/26/2004
Status: offline 		 
I had a life threatening illness which I recovered from, but one of the most difficult things for me to deal with during the entire ordeal was the unwillingness of both my doctors and my immediate family to TELL ME THE FUCKING TRUTH.  If any of them were good at lying it might have worked out for them.

Bitter, party of one, my table is ready.

I have 3 close friends who are doctors, who explained to me what my doctor was unwilling to tell me.  All of these suggested I get second and third opinions.  I did.  Im still here.

Difficult problems to overcome are one thing, I can deal with that.

People who think I am stupid and tell me inane twaddle (like it will all be ok and I should just take their blue pill) because they dont want to upset me make me want to, in the words of Conan the Barbarian, sell myself on a sea of dead people.

Sinergy

_____________________________

"There is a fine line between clever and stupid"
David St. Hubbins "This Is Spinal Tap"

"Every so often you let a word or phrase out and you want to catch it and bring it back. You cant do that, it is gone, gone forever." J. Danforth Quayle


(in reply to maybemaybenot)
Profile   Post #: 26
RE: a good death - 5/19/2007 8:52:10 AM   
KatyLied


Posts: 13029
Joined: 2/24/2005
From: Pennsylvania
Status: offline 		It is awful to think that a doctor or family would not deal with a terminal patient in an honest manner.
There are arrangements to be made and things that have to be dealt with.  I would want to know.
And also the terminal sedation sounds like a good plan.
My grandmother died from bone cancer.  In her final weeks her physician did not want to increase her pain killers because (as others have stated) it would become "addictive".  I told my mother that made absolutely no sense and told her to make some demands.  She called hospice, what a blessing that was to my family in my grandmother's last two weeks of life.  In the final days she was not "awake", but the nurse assured us that she was not suffering.  The nurses were able to tell us when the end was near and my grandmother did not die alone (she feared this because her husband had died alone).


_____________________________

“If you want to live a happy life, tie it to a goal, not to people or things.”
- Albert Einstein

(in reply to Sinergy)
Profile   Post #: 27
RE: a good death - 5/19/2007 11:23:59 AM   
DommeChains


Posts: 415
Joined: 3/23/2006
Status: offline 		As a nurse I have agree that hospice is one of the most wonderful and yet one of the most underutilized resources out there.  Many doctors view death as the enemy and they want to fight it at all costs.  Death is inevitable.  It is part of the process of life.  Every terminal patient I have had (who knew they were dying) have all expressed the same desires: to die with minimal to no pain, to die with a sense of self still intact and not hooked up to a multitude of machinery that prevents them hugging their loved ones or being touched, to be told what is happening and have their choices honored.

I was blessed to be able to care for both of my parents during their terminal bouts with lung cancer.  I was able to keep their pain to a minimal level and bring them home to die in their own bed.  I was holding my mother as she breathed her last and had the joy and comfort of hearing her last words on this earth to be "I love you".  That is the kind of death I want.  To be without pain, to be at home and to be in the company of my husband and able to make sure he knows I love him and I will be OK as I end my life.

I was able to do this for my parents because I advocated for them.  I knew the right things to ask and to say to the doctors.  They gave me their durable powers of attorney and expressed from the beginning that I was to be informed of all of their medical issues, that I had their permission to speak for them when they no longer could.  We were able to do this because my parents were wise and discussed as a family how we wanted to deal with death.  My husband and I have done the same thing.   

(in reply to KatyLied)
Profile   Post #: 28
RE: a good death - 5/19/2007 11:31:42 AM   
MistressNoName


Posts: 664
Joined: 10/26/2006
Status: offline 		Totally agree with you DommeChains. As a social worker, I find it deplorable how underutilized hospice is...and to me surprisingly so in my area...no one seems to know or want to know how to talk about terminal illness and death, not docs, not nurses, not social workers and certainly not the families of patients. Well, to say "no one..." is certainly an exaggeration, but it is so often the case. Additionally, some hospice services are inappropriate, not suited to the needs of the patient and family and let's not even go into poor insurance coverage.

Oh how I wish I could just fix it all.

MNN

(in reply to DommeChains)
Profile   Post #: 29
RE: a good death - 5/19/2007 11:59:53 AM   
MasDom


Posts: 375
Joined: 11/10/2005
Status: offline 		I tried to kill myself once or twice.
Life was just really fucked up back then..

I don't know how I survived but after the first time they just left me in the hospital room for two days on a simple drip.
     No meds or anything really...

After wards I was put on lexapro which made it worse and tried again.
   The only consoling was for group therapy about getting my life back together.
      No one ever asked why...

I found out later that I was left to die in the hospital.
that what I did should have caused mass infection, and death.

It was just so crazy...


I guess I may as well explain it though.
  When I was younger a girl had an abortion and left me.
      It just effected me badly I guess...
So I kept pushing myself on the next girl to come along...
     And god she was so perfect...
But abstanent...

Eventually I tried to rape her.
After realizing what I was doing I fled home and locked myself away inside for a few years as my life fell apart.
  So confused and lost inside myself...

Eventually things built up like my adopted father slowly withering away in pain and discomfort.
   His last day awake spent loosing his mind.
And as he spoke to the shadowy people not really their.
   He told me their was something he had to get off his chest.
And with that I was finally handed the news paper article about my real birth mother, and told I was adopted.
    And their it was..
It read Katherine.Straw killed by motorist on a cold icy day.

  Apparently she went under the railing they eventually took down near the street and just slipped.
     A few other things went bad, Like a best Friend being shot by an officer...
    remembering a relationship that never was ,because I wouldn't patch it up and she killed herself.
    The girl I almost raped moving away...

Shit I just went blank inside.
  This lull I couldn't wake from any more...
      A self hatred building you couldn't understand less you've ever felt it for yourself..

Eventually I started rendering my own flesh..
And eventually went completely mad.
When I snapped I wanted so badly to be any one else.
A complete opposite of me for who I had become..
      I couldn't even explain what was going through my mind.

So what I did was just so...
   It was cartoonish ....

Any ways i,m better now, and put that all behind me.
Going back to sincere relationships on my terms.
Finding happiness, and Friends in all this.

But i,ve learned not to hide it from any one.
   Sure it makes People uneasy, But it also makes me real...

We've all been hurt you know.
Just some people have it really bad...
I,ve survived and now I move on.
    But to hear about this.

They didn't give me any dignity while I was their.

They took photo's for the case book of weird things.
  Laughed and poked at me as if I was bubble rap.
And then sent me to bed for observation..
    The only person giving me any respect
was the truck driver sharing the room with me.

Deadly ulcer in his stomach.
Keeping face as he was really in pain..
   Nice guy, and that was the only ray of light..

So basically I was just dead in all respects.
  no stopping what I had done, Just dealing with the infections after wards.

Lucky me....

(in reply to Sinergy)
Profile   Post #: 30
RE: a good death - 5/19/2007 12:30:11 PM   
Sinergy


Posts: 9383
Joined: 4/26/2004
Status: offline
quote:

ORIGINAL: KatyLied

In her final weeks her physician did not want to increase her pain killers because (as others have stated) it would become "addictive". 



This makes almost as much sense for a terminally ill patient as sterilizing the injection site for a person being put to death by lethal injection.

Sinergy

_____________________________

"There is a fine line between clever and stupid"
David St. Hubbins "This Is Spinal Tap"

"Every so often you let a word or phrase out and you want to catch it and bring it back. You cant do that, it is gone, gone forever." J. Danforth Quayle


(in reply to KatyLied)
Profile   Post #: 31
RE: a good death - 5/19/2007 2:52:48 PM   
maybemaybenot


Posts: 2817
Joined: 9/22/2005
Status: offline 		The incidence of addiction in terminal patients recieving opioid therapy is less than 5%. Terminal pain only gets worse, so it follows that the dosage needs to be increased as pain increases: that is called tolerance. MDs confuse this with addiction because they don't know the difference between addiction, tolerance, and physical dependence. Addiction is not a property of the drug, but a property of the person. Physical dependence is a property of the drug. And that means any one of us, in a traumatic accident in which we have pain that needs to be relieved by opioids, and we are on them more than about 7-10 days, will have physical signs of withdrawl from the medicine, unless it is tapered off slowly. That is not addiction, that is your bodies response.
Doctors who spout off about addiction in terminal patients needs to be " bitch slapped" by the patient, the family or some form of advocate. I have a fact sheet I give to MDs who want to haggle with me about pain control addressing those three things. I also have a fact sheet on liability for inadequate pain control and the possiblity of being sued for abuse and neglect. I also tell them I am not above giving this fact sheet to the family for their education if he does not co operate. I generally win. And we usually settle our differences before it goes that far. Please keep in mind, I do not prescribe these meds, we have a hospice team with a MD who is a pain management specialist. He is consulted on difficult pain management concerns and we nurses take those reccs to the primary care MD to approve.

And a note for anyone who is going thru or faces caring for a dying loved one in the future: There is no maximim dose of Morphine or Oxycodone or Dilaudid or Methadone. they can be increased ad infinitum  as the pain worsens.

                                 mbmbn

_____________________________

Tolerance of evil is suicide.- NYC Firefighter

When tolerance is not reciprocated, tolerance becomes surrender.

(in reply to Sinergy)
Profile   Post #: 32
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