Quest to die with dignity...

[The Captain]

www.yahoo.com/health/one-womans-quest-to-die-with-dignity-and-what-it-means-99374572007.html


"I've discussed with many experts how I would die from it, and it's a terrible, terrible way to die. Being able to choose to go with dignity is less terrifying."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Heavy topic and not one that gets enough discussion IMHO in this country.  I think many of our end of life decisions and processes are really messed up.  

It's a shame this woman had to move at the end of her life in order to be able to maintain a bit of control.  I admire her courage in bringing this topic into the public eye and sincerely hope that she has some peace in her final months.

[Shooby]

Sad to see a young woman having to deal with that.

[ՏՇԾԵԵʅՏɧ_LԹՏՏʅҼ]

Heavy topic and not one that gets enough discussion IMHO in this country. I think many of our end of life decisions and processes are really messed up.

Sadly, it's not OUR end-of-life decisions that are messed up - it's the people who have the power to refuse us the right to a dignified death.

When my SIL was wasting away from liver cancer and down to less than 50 lb, and was beyond any further treatment or recovery, she had to suffer out out months on end lying in a hospital bed being fed through IV's and drugged out on narcotics 24 hrs a day. In the last 5 months, she even refused to let her children see her in that condition (they were small at the time). And my brother had to endure her pain along with her - and watching her die slowly while he tried to get her to sip some water through a straw so she could *try* to speak.

All she wanted was for the suffering to end. And they wouldn't allow her that right - because a dignified death wasn't legal. The hospital/cancer center was responsible for keeping her comfortable and providing nutrition and meds "until her time" once further treatment/chemo was futile.

,

[The Captain]

SL - I am sorry your family had to go through that.

We've also had similar experiences in my family.   I remember when Dr. Kevorkian first hit the news having some very heated discussions with friends on this topic.  At the time I was in the minority in my views.  Apparently (based on the laws by state) I still am.  

Personally I have always felt that how we deal with death is just as important as how we deal with life.  People should have the right to decide how they end their journey.

[mmhmm]

What a sad, sad world this poor woman must cope with. It's a world, unfortunately, that doesn't understand. It doesn't understand what it is to waste away, piece by little piece, until there's nothing left but a shell of the person who once laughed, and sang, and lived life with joy. I'm watching it with my mother. It's devastating. Like SL's SIL, mother doesn't want family to visit anymore. She doesn't want them to see her this way, and it tires her so to have visitors. She can't see them. She can't hear them unless they yell. She can't sit up without bed assist. She's tired, and ready to move on. I so understand.

The woman who tells her story in the article you've posted, Captain, is so young. She had so much ahead of her. It's not her wish to end her life. The cancer is ending her life. All she wants is to be able to choose the time and manner in which that passing takes place.  Is that so much to ask? 

[zibazinski]

No, it is not. It's shameful that we are kinder to our beloved pets than we are to our beloved humans. 

[zibazinski]

Anyone read the book, FIVE DAYS? The woman has Huntingtons Disease.

[Wisconsin Beth]

I didn't follow the Captain's link but wanted to add this link.  www.slate.com/articles/health_and_science/medical_examiner/2014/10/end_of_life_medical_decisions_atul_gawande_book_excerpt_on_no_risky_chances.html

I think it shows that change IS happening in this area, it's just slow.  I do think we're going to see a LOT of change, rapidly, in this area in the next 25 years or so, as the Boomers start reaching the end of their lives and TELL their doctors what they want.  Esp. from the Boomers who've taken gone though the process with a parent or loved one already. 

And if I'm off topic, since I didn't read the link, I apologize. 

[mmhmm]

Oct 8, 2014 7:36:42 GMT -5 Wisconsin Beth said:

I didn't follow the Captain's link but wanted to add this link.  www.slate.com/articles/health_and_science/medical_examiner/2014/10/end_of_life_medical_decisions_atul_gawande_book_excerpt_on_no_risky_chances.html

I think it shows that change IS happening in this area, it's just slow.  I do think we're going to see a LOT of change, rapidly, in this area in the next 25 years or so, as the Boomers start reaching the end of their lives and TELL their doctors what they want.  Esp. from the Boomers who've taken gone though the process with a parent or loved one already. 

And if I'm off topic, since I didn't read the link, I apologize. 

In my experience, it isn't the doctors who are the problem. It's the law. Sure, there are some doctors who will balk at the idea of helping someone to a gentle passing, but most don't think that way. The law, however, forbids them from using their good judgment along with the patient's wishes to make end-of-life decisions. The laws, as they are currently in most states, mandate suffering for these patients if you get right down to it. Frankly, it's infuriating.

[zibazinski]

You aren't off topic. I've told DS to take me to a lake and let me "wander in." I can't swim. I don't want to be mindless or any kind of burden to anyone, especially my loved ones. But I don't want him getting arrested, either. Even Oregon won't help you along if you've just lost your mind. I'm not existing like that. Told DS I'd haunt him if he let me exist like that. I'm hoping if I get the diagnosis, I can deal with it myself.

[zibazinski]

Oct 8, 2014 7:42:15 GMT -5 mmhmm said:

Oct 8, 2014 7:36:42 GMT -5 Wisconsin Beth said:

I didn't follow the Captain's link but wanted to add this link.  www.slate.com/articles/health_and_science/medical_examiner/2014/10/end_of_life_medical_decisions_atul_gawande_book_excerpt_on_no_risky_chances.html

I think it shows that change IS happening in this area, it's just slow.  I do think we're going to see a LOT of change, rapidly, in this area in the next 25 years or so, as the Boomers start reaching the end of their lives and TELL their doctors what they want.  Esp. from the Boomers who've taken gone though the process with a parent or loved one already. 

And if I'm off topic, since I didn't read the link, I apologize. 

In my experience, it isn't the doctors who are the problem. It's the law. Sure, there are some doctors who will balk at the idea of helping someone to a gentle passing, but most don't think that way. The law, however, forbids them from using their good judgment along with the patient's wishes to make end-of-life decisions. The laws, as they are currently in most states, mandate suffering for these patients if you get right down to it. Frankly, it's infuriating.

My Godfather was the town doctor in a small town in MA. He helped people along when it was their time but he said, when he was still alive, he never would now.

[mmhmm]

Oct 8, 2014 7:43:59 GMT -5 zibazinski said:

Oct 8, 2014 7:42:15 GMT -5 mmhmm said:

In my experience, it isn't the doctors who are the problem. It's the law. Sure, there are some doctors who will balk at the idea of helping someone to a gentle passing, but most don't think that way. The law, however, forbids them from using their good judgment along with the patient's wishes to make end-of-life decisions. The laws, as they are currently in most states, mandate suffering for these patients if you get right down to it. Frankly, it's infuriating.

My Godfather was the town doctor in a small town in MA. He helped people along when it was their time but he said, when he was still alive, he never would now.

I've seen it done, zib, but not in a long time. Doctors are afraid to prescribe even a morphine drip for a patient in severe pain. They're afraid they'll be nailed for killing the patient if the patient dies. 

[Shooby]

Oftentimes, it isn't the doctor but family members who insist that EVERYTHING be done and how dare the doctors recommend Hospice because that means they are "giving up" on that person. I went through that with my SIL and MIL. My SIL simply refused to recognize the terminal nature of MIL's illness and since she had POA, there was nothing we could do but sit by while SIL bullied and pushed until MIL had multiple tubes, surgeries and a trach on a ventilator at the end of her life. It was ridiculous.

[cael]

My uncle took advantage of Oregon's law back in hm.. 1998 I want to say. He had lung cancer that spread like wildfire and zero chance of survival. It was very tough on my mother (his little sister) and on his wife/son, but my aunt now is a huge advocate of death with dignity. He was in pretty rough shape when they/he decided it was time and he was better off dying at home with his family around him and still being lucid, he never would've wanted to waste away in a hospital. I think I'm for death with dignity laws being explored, but I feel it's still one of those things no one wants to talk about.

(it was also very kind of my mother to not tell us how it went down because she didn't think we could process it at 17 and 14, which we could have - we found out by reading a paper she left lying around that she wrote for a college class several years later )

[mmhmm]

Oct 8, 2014 7:52:14 GMT -5 Shooby said:

Oftentimes, it isn't the doctor but family members who insist that EVERYTHING be done and how dare the doctors recommend Hospice because that means they are "giving up" on that person. I went through that with my SIL and MIL. My SIL simply refused to recognize the terminal nature of MIL's illness and since she had POA, there was nothing we could do but sit by while SIL bullied and pushed until MIL had multiple tubes, surgeries and a trach on a ventilator at the end of her life. It was ridiculous.

I've seen that, as well, Shooby. We can talk until we're blue in the face. If the family (or, the decision maker) is determined that all possible measures should be taken to keep the poor, dying patient alive, caregivers have no choice. I actually had a family member tell me once all I had to do was shock the patient - just like they do on ER! That'll fix 'em. Never mind the patient was in her nineties and suffering from several concurrent morbidities. Education is needed badly, as are laws that respect the wishes and needs of the dying, not the wishes of the emotionally distraught family. 

[Wisconsin Beth]

Oct 8, 2014 7:52:14 GMT -5 Shooby said:

Oftentimes, it isn't the doctor but family members who insist that EVERYTHING be done and how dare the doctors recommend Hospice because that means they are "giving up" on that person. I went through that with my SIL and MIL. My SIL simply refused to recognize the terminal nature of MIL's illness and since she had POA, there was nothing we could do but sit by while SIL bullied and pushed until MIL had multiple tubes, surgeries and a trach on a ventilator at the end of her life. It was ridiculous.

Conversations with family need to be held as well.  And you need to pick the POA person who understands what you want.  Are they easy conversation to have - No.  But they need to be had. 

[The Captain]

Oct 8, 2014 7:58:42 GMT -5 mmhmm said:

Oct 8, 2014 7:52:14 GMT -5 Shooby said:

Oftentimes, it isn't the doctor but family members who insist that EVERYTHING be done and how dare the doctors recommend Hospice because that means they are "giving up" on that person. I went through that with my SIL and MIL. My SIL simply refused to recognize the terminal nature of MIL's illness and since she had POA, there was nothing we could do but sit by while SIL bullied and pushed until MIL had multiple tubes, surgeries and a trach on a ventilator at the end of her life. It was ridiculous.

I've seen that, as well, Shooby. We can talk until we're blue in the face. If the family (or, the decision maker) is determined that all possible measures should be taken to keep the poor, dying patient alive, caregivers have no choice. I actually had a family member tell me once all I had to do was shock the patient - just like they do on ER! That'll fix 'em. Never mind the patient was in her nineties and suffering from several concurrent morbidities. Education is needed badly, as are laws that respect the wishes and needs of the dying, not the wishes of the emotionally distraught family. 

Sooo this!!! My grandmother over-rode her own sister's (my aunt) wishes that were actually legally documented. How in the hell can we allow that to happen?

It's something I worry about should something happen to me.  My family is very aware of my wishes but I'm not sure DH will be able to carry them out if need be. 

[mmhmm]

Oct 8, 2014 8:04:10 GMT -5 The Captain said:

Oct 8, 2014 7:58:42 GMT -5 mmhmm said:

I've seen that, as well, Shooby. We can talk until we're blue in the face. If the family (or, the decision maker) is determined that all possible measures should be taken to keep the poor, dying patient alive, caregivers have no choice. I actually had a family member tell me once all I had to do was shock the patient - just like they do on ER! That'll fix 'em. Never mind the patient was in her nineties and suffering from several concurrent morbidities. Education is needed badly, as are laws that respect the wishes and needs of the dying, not the wishes of the emotionally distraught family. 

Sooo this!!! My grandmother over-rode her own sister's (my aunt) wishes that were actually legally documented. How in the hell can we allow that to happen?

It's something I worry about should something happen to me.  My family is very aware of my wishes but I'm not sure DH will be able to carry them out if need be. 

I can understand your concern, Captain. Most families don't really sit down and hash this out until an understanding is clearly reached. It's just not an easy thing to do. I know what mother wants and I know it doesn't matter what the heck I might want when the time comes. It's her wishes that count as it's her life, not mine. That's something people can forget when they're reeling emotionally.

[Shooby]

Many people really don't understand what doing "everything" means. They don't understand it from a medical point of view and that there are a lot of procedures, surgeries, etc, that can be done in the name of trying to help but ultimately are simply not going to improve, cure or enhance the end of your life. It's all about having their heart beat one more day regardless of the pain and suffering inflicted. And, POAs often do not understand this either. What we need are doctors and nurses to have a conference with the family and have a FRANK talk about the realities of that person's condition.

[mmhmm]

Oct 8, 2014 8:16:44 GMT -5 Shooby said:

Many people really don't understand what doing "everything" means. They don't understand it from a medical point of view and that there are a lot of procedures, surgeries, etc, that can be done in the name of trying to help but ultimately are simply not going to improve, cure or enhance the end of your life. It's all about having their heart beat one more day regardless of the pain and suffering inflicted. And, POAs often do not understand this either. What we need are doctors and nurses to have a conference with the family and have a FRANK talk about the realities of that person's condition.

In most cases of this type I've dealt with, a frank, open discussion does bring about more understanding and often results in a decision to honor the wishes of the patient. Unfortunately, it's too often true that, no matter what medical professionals say, the family is determined that they will not "give up hope".

[Shooby]

My MIL had end stage COPD. SHe was literally gasping for air at the end of her life. And, my SIL couldn't let go. No amount of medicine, medical care, treatment or surgery was going to change her lungs and only cause more detoriation. It was very sad. Fortunately, I was POA for my mom. And, I was called "selfisH' by her brother (who only ever visited or called her about once every 5 yrs) for not wanting to put her on dialysis at the end of her life.

[mmhmm]

Oct 8, 2014 8:30:43 GMT -5 Shooby said:

My MIL had end stage COPD. SHe was literally gasping for air at the end of her life. And, my SIL couldn't let go. No amount of medicine, medical care, treatment or surgery was going to change her lungs and only cause more detoriation. It was very sad. Fortunately, I was POA for my mom. And, I was called "selfisH' by her brother (who only ever visited or called her about once every 5 yrs) for not wanting to put her on dialysis at the end of her life.

I'm fortunate my children understand.  They know what their grandmother wishes from her own lips and are prepared to let her go with as much dignity as I'm able to provide. My daughter helps with her care when help is needed. For the most part, since she's unable to leave her bed now, I'm able to take care of her by myself, which is what she prefers. She doesn't want strangers in the house (like hospice) and doesn't want the family to see her as she is. Everyone has been great about it even though it's hard on them. My brother doesn't even bother to call the vast majority of the time, but won't kick up a fuss. He, too, knows her wishes and will comply just to keep himself safe from me removing his head with a meat cleaver!

[zibazinski]

Ugh. DF insisted that he be made my POA for health. I didn't want him to be because he'd do everything to keep me alive. He says he wouldn't but I know he would. 

[billisonboard]

Oct 8, 2014 8:36:37 GMT -5 mmhmm said:

... to keep himself safe from me removing his head with a meat cleaver!

His own quest for death with dignity.

[mmhmm]

Oct 8, 2014 8:40:47 GMT -5 billisonboard said:

Oct 8, 2014 8:36:37 GMT -5 mmhmm said:

... to keep himself safe from me removing his head with a meat cleaver!

His own quest for death with dignity.

Precisely! He knows me well enough to know he'd best just butt out!

[NancysSummerSip]

A very brave woman, to have not only made her decision, but to go public with it. Good for her for having the courage. I plan to do the same thing, if ever I am faced with such an ordeal. Not asking anyone's blessing or permission, either, and don't give a rat's hindbutt if it's legal, for that matter.

[thyme4change]

When I heard this story on the news, I thought of this article.  This lady is an inspiration to me.  I hope I'm strong enough to do myself in, rather than live in a relatively healthy body and a completely broken mind.  Alzheimer's is rampant in both sides of my family - so if the cancer doesn't get me, the Alzheimer's will.  


www.npr.org/blogs/health/2014/06/23/323330486/how-a-womans-plan-to-kill-herself-helped-her-family-grieve

Five years ago, after doctors told her that she had Alzheimer's disease that would eventually steal her ability to read, write and recognize people, Sandy Bem decided to kill herself.

[swamp]

Oct 8, 2014 8:55:20 GMT -5 @anne81 said:

In my experience, it isn't the doctors who are the problem. It's the law.

The law says you have to do everything unless there are advance directives stating otherwise.  If it didn't say that, the government would be accused of playing God and making health care decisions for us. 

In my experience, it's people who have never spelled out their wishes, didn't leave an advance directive, or family members who disregard those wishes.

[Wisconsin Beth]

Oct 8, 2014 9:12:01 GMT -5 swamp said:

Oct 8, 2014 8:55:20 GMT -5 @anne81 said:

The law says you have to do everything unless there are advance directives stating otherwise.  If it didn't say that, the government would be accused of playing God and making health care decisions for us. 

In my experience, it's people who have never spelled out their wishes, didn't leave an advance directive, or family members who disregard those wishes.

Swamp, what could be done to someone who disregarded those wishes?  Say the Medical POA opted to disregard a DNR order? 

[swamp]

Oct 8, 2014 9:15:22 GMT -5 Wisconsin Beth said:

Oct 8, 2014 9:12:01 GMT -5 swamp said:

The law says you have to do everything unless there are advance directives stating otherwise.  If it didn't say that, the government would be accused of playing God and making health care decisions for us. 

In my experience, it's people who have never spelled out their wishes, didn't leave an advance directive, or family members who disregard those wishes.

Swamp, what could be done to someone who disregarded those wishes?  Say the Medical POA opted to disregard a DNR order? 

go to court to force removal of life support.