Compassion and Choices in ALS

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,142
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Here in Australia, those who can't do what I did at home, take their PALS into the palliative care ward and stay with them while the health staff do what I did. They also report that it brings them as much peace as their it did their PALS, however it can take just a little longer as they often get a bit more supportive measures in a hospital setting that make the process last some days longer.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,897
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
No, there is no comparison between assisted death and execution, and I have known no CALS on or off the forums who found themselves unable to be there at the end, whether active participants or not. On the other hand, if a PALS decided to go it alone while still able to do so, that implies that someone would find them after. That would seem much more traumatic than spending the last chapter together.

We've said this before, but it's ALS that's the killer. And when there is no more benefit to struggling against it, the battle shifts 100% to the fight against unneeded suffering. I know many of us are the better for having won it, whether by administering medication or by stopping nutrition.

Vincent, not to be presumptuous, but I hope you find that your best plan is with your family at your side, because I'm fairly certain that's where they want to be.

Best,
Laurie
 
Last edited:

KenM

Active member
Joined
Jun 21, 2019
Messages
48
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
City
Charlotte
Carolina 76 have you gotten any guidance from either the Joe Martin ALS Foundation in Charlotte or the ALS Association NC chapter care services team?
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,415
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
For a video of the webinar, go to the Compassion and Choices website and search ALS .
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
991
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
I am not talking family members. I am referring to the people who will be doing the active part. Administering the drugs, even getting you ready. This will damage the medical professions in unimaginable ways. While I'm glad you aren't involving your people in the active part of killing you, There are others whose job requires them to be there. I spoke with one of the physicians who was in on one of the first cases in Quebec. He said it took a month for the staff on the floor to return to normal. He was actually quite professional and detached in his presentation he gave at the ALS Canada Research Forum. I met him at the same conference the following year. He was very circumspect in talking about what he was discussing the previous year. Killing people damages the killers.
Vincent
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
2,041
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Vincent, that is your opinion and maybe from belief.

I have read extensively about making the choice and following
through with that choice. Many of the “killers” as you called them
previously, have seen the last days first hand. PALS being mostly
incapacitated, tubes, heavy meds for pain, fighting to breathe
communicating with their eyes and CALS tired and suffering too.

Many, more than you may have referred to, are understanding,
compassionate and supportive. They are often there with the family
after the final moment.

I’m sure they know what they are doing, if they feel it’s too much
for them emotionally… they don’t have to help, they wouldn’t help.

Hospice?

Many PALS have passed in their sleep while their CALS and family
were sleeping only to wake and find them gone. What’s often said?
They wanted to be with him/her at that last moment almost feeling
guilt they weren’t.

Let's remember the nurses who have been beside when thousands
have died from COVID 19. They wanted to be there... and continued
to be there or they could have just left.

Two thoughts of the matter I guess.
 
Last edited:

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,897
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
You don't need third parties to administer drugs or get you ready, so I'm not sure what you mean, Vincent. 99% of our members die at home, and there is no reason not to.

If you are referring to those physicians who participate in "death with dignity" law-sanctioned deaths, which, once again, are not the way that most PALS die, they choose to do that. No one makes them.

In any inpatient environment, every week, there are "slow codes," formal DNRs, discussions of "quality of life," quiet conversations and meaningful looks between family and staff, that support a peaceful passage. If someone in health care can't handle aiding a kinder, gentler end of life, they're in the wrong place. I have worked in three hospitals and it is hard to think of a time where anyone was damaged by applying that philosophy, however actively or passively they supported family wishes (again, by choice).

In the pandemic, of course, everyone in the hospital is gutted by the unnecessary COVID deaths at scale, but they are still doing their utmost for that softer landing.

It is being able to control more variables that I think generally leads PALS to end their lives in their own bed. And for those P/CALS still in earlier stages, it bears repeating that by the time the natural end of life rolls around, more or less, it is not a 60 to 0 situation at all, because 60 was a long time ago.
 
Last edited:

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,415
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Wow and wow. Medical staff don’t “kill” anyone in Medical Aide at the end of life. They prescribe the drugs for DYING people to administer themselves. Honestly, that is a straight up false characterization. There are no “killers” here, save the disease that is taking the lives of those who choose MAID. If “witnesses“ are damaged by anything, it is watching that decease process take someone for months and years before they choose to take a spot of control over their own end, with a six months to live or less prognosis.
Vincent, this is a VERY false picture of what is happening here, which is 100% voluntary situation that has nothing to do with anyone being “killed”.
 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,279
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Where Vincent lives the laws are different and medical professionals can administer the actual medication if the patient wants or needs that. There is an option for prescription to be self administered but we all know patients can not
always do that And not everyone has someone in their lives willing to help. I think there was a misunderstanding about how it happens in the US
 

JimInVA

Senior member
Forum Supporter
Joined
May 29, 2014
Messages
913
Reason
Lost a loved one
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
Out of consideration for/of the "witnesses" for Darcey's death, I asked both of my kids (daughter, 31 and son, 34), separately - "Do you feel traumatized for having watched your Mom's last moments of life and the process of her passing?" Each of them, in their own words said, in retrospect, they could not have imagined it to have happened any differently than it happened with their participation. My son, said, "Dad... it was in keeping with what you and Mom have always granted us... total honesty and participation in all things 'family'. I would have been disappointed to have participated in Mom's life... and ALL of her ALS journey... only to be excluded upon her death."

Darcey's long-time dear friend and my co-caregiver, felt deeply honored to have been asked by Darcey if she'd consider being at her bedside on that appointed day. And the two hospice workers... one the RN and the other the Social Worker, contacted me some days later. As the Social Worker said, "We've never been with a family... so open, so loving and so understanding of the situation at hand... than what all of you shared. You and Darcey, both, made us feel so welcomed for our participation... that we would be honored if you'd consider inviting us to Darcey's "Celebration of Life" if/when it should happen."

So, from our own perspectives, it was perfectly right and natural to have participated in the circle of life with so loved a person as Darcey... friend, mother and wife.

Darcey initiated the action of hospice administering meds (Lorazepam and Morphine) with the affirmative nod of her head. And I helped Darcey achieve her wish and my promise to her by removing her BiPAP mask at the appropriate time. I have no guilt for having honored her and her wishes.

I don't suggest that others will necessarily feel as we did. But I felt it important to share with you, our (my family's) take on Darcey's end of life.

My best...

Jim
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,142
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
In the last 2 weeks or so of Chris's life, our very dear palliative nurse took me aside and asked me if I could carefully consider this question - "How would you feel if you happened to give him the last dose of morphine and he did not wake up?" She wasn't asking would I kill him, but how would I feel if that last dose was by my hand. I looked her in the eye and said I would be grateful that he can stay at home the way he wanted and it would not concern me.
And it never did.
Not saying this to argue against what anyone else might feel, just saying that for me there was only open and honest conversations with feelings examined, well in advance. His wishes were clear, and being able to allow him to do things his way has given me so much peace, even as I grieved losing him, to ALS, not to anything else.

Such important conversation here - and I'm in Australia where we have none of the laws the US or CA have, so just talking my experience. I'm glad we can all share differing sides of things - thanks for clearing Nikki that what is being talked about from a CA perspective is a different situation to what this thread was about. In that situation though, surely doctors can simply opt not to work in that situation if they cannot deal with what it does to them? (and indeed should not as it is hard to provide a truly peaceful end if you are not in tune with what is happening and how)

I think if you understand that circle, that death is part of life, then it isn't really traumatic. Certainly not like some long lingering situations I have seen both with ALS and other terminal illnesses. That would have caused me severe trauma.
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,415
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
I am sure there are plenty of Physicians who decline to even give that final prescription where it is allowed, and that is absolutely their right. I have not known of any state in the U.S. that permits the medical staff to administer the dose/s directly, but I imagine that could change and if it did, I agree with Tillie participation by medical staff in that would be voluntary.

It might surprise some to learn that while I actively support MAID, I did straight up tell Brian I could not feed him an entire bottle of morphine, as he requested and as I am sure no one would have ever found out. IF we had had access to the final prescription, able to gather friends and family around to say goodbye and then I could’ve hold the straw to his mouth to swallow the pills (he could still swallow), that I could have done. Legally, above board, and not banking on a final big dose that has been known to put people in comas. Titration is one thing, what Brian asked me for was another thing.

There were many complex reasons I would not do that, up to and including that somehow I could not go home to my God with that One. Is that at odds with my support of MAID? Maybe, but this process is not all about logic or reason.

I was a bit torn up by doing and prepping for that presentation. I don’t think I can do this sort of activism again for awhile. I have had to work harder maintaining focus in my job, been eating poorly and been stressed by overly small things. If a big drive happens to bring it to a vote in my state, I will have to get more active again but for now I think I will lay off that cause and off of Brian’s story.

Doing the presentation did serve the purpose for me personally of “seeing” exactly why I was so torn up sometimes over two years later. I’m not being a whiner, I crawled on glass through fire for real. I am so glad Brian is at peace now and that I am beginning to find some for myself.

I’ve got a lunch “date” Friday. First one in these two plus years since Brian. It‘s not meant to come to anything and it likely will not, but it’s a start. I’m headed to Vegas in a week for three days with friends. I am working a lot these days too, and its a job I am very blessed to have, great company. I am finally about to complete the remodel of Brian’s old man cave and the guest bedroom. Life is a boat on a river. Sometimes, you just need to stay in the boat and see what lies ahead.
 

bhg

Active member
Forum Supporter
Joined
Sep 25, 2017
Messages
30
Reason
PALS
Diagnosis
09/2016
Country
US
State
California
City
Cupertino
Just watched the webinar. Lenore, thanks so much for this thread and for contributing. I now have a much better understanding of the whole process.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
991
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
As stated, this is merely my opinion. But having seen the change over time in a physician/researcher who I speak to infrequently, I know how it truly become a burden to those who participate. And yes Canada has active euthanaisia available. And we just recently expanded access to aid in dying for people who aren't terminal. This includes the mentally ill, who can now decide life isn't enjoyable any more, and I demand someone kill me. The Gottinggen Protocol used in Denmark allows you to bring your severely disabled newborn home for up to a month. And If you decide it is too much, you just bring the child back to the hospital to have it gotten rid of. When people talk about the thin edge of the wedge, This is what happens when you hit the wedge with a sledgehammer. This is where this "compassion" leads to.
Vincent
 

nona

Senior member
Forum Supporter
Joined
Oct 1, 2018
Messages
551
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
New London
Vincent, as my former boss used to say, people are entitled to their own opinions but not their own facts.

Here is some recent truth about Denmark.

and "mercy killing" for children with disabilities ended decades ago. Google searches for Gottinggen orGoetinggen protocol Denmark come up with nothing relevant.
I can see that physician -aided death for terminally ill children is controversial in the Netherlands and Belgium.
 
Last edited:
Top