Free speech, the Internet, depression, suicide, and euthanasia

Status
Not open for further replies.

Dave K

Distinguished member
Joined
Jul 13, 2015
Messages
196
Reason
Other
Country
us
State
.
City
.
When can we, or should we, restrict online speech? Should cyberbullying be a crime, like it is to shout “fire” in a crowded theater or to yell “jump!” at someone poised on a ledge? What if the online message is written with compassion, but has the predictable effect of tipping someone over the edge? Does it matter that the intent of the message was to help, not to hurt?

Occasionally I see a post in the general discussion forum in which a CALS suggests it may be a good option for a PALS to hasten their death, which is an ugly message no matter how hard you try to spin it with words of compassion or freedom of choice. Whenever I see posts like these, I worry about the PALS who visit this site when they are in the midst of a depressive episode. Words can make or break a vulnerable person at a vulnerable time.

In a civilized society, when a person--any person--talks about hastening their death, there is no duty to talk to them, but anyone who does choose to talk to them has a responsibility to try to help them so they do not feel that is a good option. This is just as true for talking to a PALS as it is for talking to anyone else who talks about hastening their death.

It is well known that many PALS think about hastening their death, but then, after an adjustment period, they recover their sense of life satisfaction. Studies also show that CALS routinely underestimate the quality of PALS’ lives. Therefore, no matter how we perceive or predict their quality of life, we CALS need to give every online PALS the benefit of the doubt that they will live to see a better day and refrain from suggesting the option of hastening their death. Otherwise, we would not be treating them equally as we treat others. We would be saying to them, in effect, "I agree your life is no longer worth living." That is a message that no one should ever have to hear, directly or indirectly. This forum, in particular, should be a safe place.

So what are we supposed to say to a PALS who talks about hastening their death? How can we help them so they do not feel that hastening their death is a good option and at the same time support their right to make their own end of life decisions? What I would say is, “First, I want you to know that if it were up to me, I would choose to have you here with me as long as I can have you, because my life is better with you than without you. But what you’re talking about is a deeply individual decision, and I will stick by you and support any decision that you make about your own life. In the meantime, you need to know that, while caring for you is hard, it is not too hard, and your family and friends will always try to help you make the best of things.” It doesn’t work just to say the middle part (“I will support any decision you make”). And it certainly doesn’t help to say “If you’re unhappy with your life, don’t forget you always have the option of hastening your death.” Regardless of any compassionate intent, the message is effectively no different than cyberbullying in that it risks tipping a depressed stranger over the edge when they could live to see a better day if words they read were more carefully chosen.

Again, words can make or break a PALS. We should treat a PALS just like we treat anyone else and always refrain from suggesting the option of hastening their death. Please, folks, when a PALS brings up the topic of hastening death in the general discussion forum, ask yourself, “could this be a PALS who is suffering from treatable depression?” and “could a PALS who is suffering from treatable depression ever open this page and look at what I am writing?” Then think about what you write before you hit “enter.” You might just save someone’s life.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,775
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Most of what I've read addresses the intent to make the transition from life to death easier and, we all know, morphine is the transitional drug of choice. No PALS wants to suffer as living with this disease is suffering enough. I think most of the posts are meant to reassure PALS and CALS that, in the end, there is a way to minimize suffering.

I encourage other PALS to go on Facebook and see the many PALS who are active advocates in the ALS community. Some of them have been alive 5, 10, 15 and even 30 years. I know one PALS who isn't on a vent and has been around 15 years with a decent quality of life. I've known others who have been on invasive ventilation and are productive members of the community, enjoy their families, and have a purpose. For many, there are options and PALS should know this.

I have a friend in my local group who has good mobility but is having trouble breathing. All of her limbs work fine. She is an attorney and has bulbar onset. She decided against a feeding tube. It broke my heart but I respect her decision. It is her life. She said, when the time comes, she will have hospice, and will deal with whatever is in store.

Sadly, some PALS have tragic deaths from falls or unexpected passing from respiratory arrests, pneumonia, etc. We just don't know.

As far as public forums, there are always thoughtless posts here and there. That's the nature of online forums. It's really up to the owner to decide what is tolerated and what is not.

I suffered from depression long before I was dx with ALS so I take extra precautions with my mental health. I've been upset by posts, both here and other places, but this is a public, online forum and really we don't know a lot about most of the people posting.

Cyber bullying is alive and well and it turns up everywhere.

My one suggestion to CALS is if your PALS is in a depressed state or has cognitive impairment, try to encourage him or her to engage in positive experiences where you can observe. If he or she is upset after being online, try to find out why and address it.

Online words hurt me so much less than words from my family and friends.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,326
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Dave,

If you are upset with a particular post, please link to it or quote a few well-chosen words. Most people here don't have time for shadow-dancing.

As to the content, your assumption that none of us would ever recommend a less than fully "natural" death to anyone but a PALS is manifestly incorrect. Anyone who has taken care of or been a family member of someone with a terminal condition, from cancer to brainstem stroke to Alzheimer's and many more, knows what I am talking about.

Nor is it always the case that PALS considering "hastening" their death always "recover their sense of life satisfaction." I have no idea where you have the data to support that, but will not further anyone's distress by citing examples from here that prove otherwise.

Since I am likely among those referenced in your post, I feel moved to note that equating encouragement of a P/CALS-driven death process with "cyberbullying," is itself closer to the latter than the former will ever be.

Best,
Laurie
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
City
Tucson
I believe this post may have been triggered by mine saying I was tired, family exhaustion and not wanting gtube..knowing hospice is there to make passing comfortable and knowing how it's done were actually çomforting to me ..I like having some choice left,however small.

As long as there is some quality left I will keep going, but it is good to know that I won't have to suffer much in a locked in state.

I appreciate all points of view from you good people!

https://www.alsforums.com/forum/general-discussion-about-als-mnd/38540-feeding-tube-scheduled-but-having-second-thoughts.html]
 
Last edited by a moderator:

Dave K

Distinguished member
Joined
Jul 13, 2015
Messages
196
Reason
Other
Country
us
State
.
City
.
Dear AZgirl,

First of all, I'm surprised to be seeing PALS responding to this, as I thought this was a CALS-only forum. Oh well, live and learn.

Anyway, your post didn't trigger this. This is something that has been on my mind persistently ever since I realized Alex123 went silent on this forum after saying he was considering assisted suicide because, among other things, he believed he would be forced to live in a facility if he got a trach because he could not afford in-home care. I posted a reply explaining that that in our state (we're both from CA), there are established avenues of getting funded in-home nursing care, but when I realized my reply was several months after his last post, I felt awful thinking that he probably never saw my response and may have ended his life without being fully informed about his potential care options. I thought about the research showing that caregivers routinely underestimate quality of life on a vent and was horrified reading some of the things CALS were posting about quality of life on a trach. I just think CALS need to be aware that there are vulnerable PALS out there who read this forum, some of whom are under substantial duress and/or are not well informed about their prognosis or care options. That is just the reality of our world. Words can make all the difference to a vulnerable individual who is in a fragile state, so we CALS just need to "Think before you hit Enter."

Anyway, as long as you're reading this, I can't tell you how uplifting it was to see the photos of you and your family. It is one of the absolute best things I have seen on this forum.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,757
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
To clarify who may post where: DIHALS may only post in the DIHALS subforum.

In general PALS and CALS should start threads in either their own subforum, general discussion or a specialized subforum ( example) PEG as appropriate. Once in a while someone will seek input from the " other half" specifically and start a thread in that subforum.

Any PALS or CALS that has relevant input to a thread can reply in the opposite subforum, though we do ask that consideration is given to appropriateness. Kay's reply was very appropriate and on point I think, as was Kim's

We do ask CALS to take extra care if posting in general and not speak of burden of care etc. you may see threads are occasionally moved to the CALS section for this reason. I have said more than once PALS read the CALS subforums at their own risk.

Sometimes the Thread title specifies PALS only or CALS only. In that case of course we ask that members respect that.

Finally, some of us are PALS and past CALS so I guess we can post everywhere! LOL!

Now back to regularly scheduled programming...
 
Last edited:

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,775
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Dave,

I posted because I was a caregiver for both my mother and father in terminal illnesses. They didn't have ALS and I didn't have the knowledge I now have about mitigating suffering. In retrospect, had I known as much as I know now, I probably could have made their last few months much better for them and my father's death less traumatic for my mother, for him, and for myself. He only had a nurse the final week of his life and she did not do her job in relieving his pain and suffering.
 

Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
City
New York
In a civilized society, when a person--any person--talks about hastening their death, there is no duty to talk to them, but anyone who does choose to talk to them has a responsibility to try to help them so they do not feel that is a good option. This is just as true for talking to a PALS as it is for talking to anyone else who talks about hastening their death.
What happens in "civilized societies" such as Belgium, the Netherlands, Vermont, Oregon, where there are euthanasia statutes in place? Do those statutes charge the physicians with the responsibility to "try to help [patients] so they do not feel [euthanasia] is a good option"? My guess is that physicians in those jurisdictions have an obligation to show the patient that there are other options, but I doubt the statutes say anything about euthanasia not being a "good option." If euthanasia were not a "good option" then why would it be legal in those jurisdictions?
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,189
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
My thoughts on the OP are too lengthy to read here. I'll try to make a blog entry.
 
Last edited:

Dave K

Distinguished member
Joined
Jul 13, 2015
Messages
196
Reason
Other
Country
us
State
.
City
.
What happens in "civilized societies" such as Belgium, the Netherlands, Vermont, Oregon, where there are euthanasia statutes in place?
Neither Vermont nor Oregon nor any U.S. state has legalized euthanasia. You are correct that the Netherlands and Belgium have legalized euthanasia fairly recently. I think the rest of the world is watching to see what happens there, and it is currently uncertain whether those laws will survive.

Do those statutes charge the physicians with the responsibility to "try to help [patients] so they do not feel [euthanasia] is a good option"?
I believe in the Netherlands, a patient may request euthanasia only after a physician has ensured that the patient has "received every available type of palliative care." So my take on this is (1) this is a discussion that should be between a patient and the patient's physician and family, i.e., an in-person discussion with people who are personally familiar with the patient, as opposed to strangers on the Internet, and (2) when a physician talks to a patient about euthanasia in the Netherlands, all other palliative options must be discussed first. On this Internet forum, I often read posts by people who have not been fully informed about their palliative care options, so caution dictates that we must presume our readers are not fully informed about all of their care options and therefore would not qualify under the Netherlands rule. I think we on the Internet are simply not in a position to be talking to a PALS about suicide or euthanasia as being a good option. Even if they are in the Netherlands, that is a discussion they should be having with their family and physicians. My only point is that we need to think about what we are saying on this forum and have to assume that there are vulnerable, fragile, depressed, uninformed, not-well-cared-for people who are reading what we write. I'm a great believer in treating PALS with the same dignity and respect as I would treat a healthy person, which includes treating a PALS just like we treat anyone else who talks about hastening their death--we should avoid using words that could lead to a tragic result.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
Actually, Oregon and now Colorado have legalized euthanasia.

Assisted suicide is within the definition of euthanasia. Latin for 'easy death' it is most commonly considered something done *to* a terminal patient, but being done *by* that patient is also addressed.

https://www.britannica.com/topic/euthanasia
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,326
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Six states + DC have death with dignity laws or in Montana's case, a court decision. As the map shows, many more are considering one.

However, I feel that we can never emphasize too often that PALS with someone who cares at their bedside can have a "good death" whether there is a DwD law in their state or not.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,775
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
The CALS and PALS I know (in person) are terrified of new health care laws that might strip their already limited benefits (Medicare.) I know this is slightly off topic but I think it's a huge burden causing stress for caregivers and their PALS.

In the State of Florida, I already pay 3X the amount of people 65 and over for my medicare supplement. This could go up more.

I know some people are already weighing the option of suicide versus bankrupting their families. Bankruptcy laws are different in each State and it's a shame health care must be weighed against providing a family the basic necessities.
 

Dave K

Distinguished member
Joined
Jul 13, 2015
Messages
196
Reason
Other
Country
us
State
.
City
.
Actually, Oregon and now Colorado have legalized euthanasia
It creates confusion to conflate "assisted suicide" with "euthanasia." U.S. states that permit "assisted suicide" or "aid in dying" do not permit anyone other than the dying person to perform the final act. In the law, there's a big difference between dying at one's own hand and dying at the hand of another, so that's why we use different terms when we talk about those things. It really isn't accurate to say that a state has "legalized euthanasia" when the state has legalized physician-assisted suicide but still prohibits both (1) "mercy killings" ("Gnadentod") and (2) "encouraging" another to commit suicide.

I do not take a position on whether it is a good idea to have laws permitting physician-assisted suicide, but I do take a position on whether it is okay to encourage a stranger to commit suicide, which is always improper.

An Internet forum such as this can provide a PALS with an opportunity to discuss end of life options that they may be uncomfortable discussing with their families, and maybe that in itself can provide the PALS with some solace. But we CALS must always be mindful of the fact that whenever someone--anyone--thinks about the possibility of hastening their death, they could be being rational or they could be emotionally crying out for help. Even trained therapists and family members can have difficulty telling when someone who expresses a death wish is just crying out for help, and we certainly can't make that assessment over the Internet.

Accordingly, when a PALS posts about the possibility of hastening their death, we should consider that they may be crying out for help, and we CALS should do the same thing that health professionals are trained to do, which is to focus on ensuring that palliative care is optimized and reassuring the PALS that a natural death in the vast majority of cases is peaceful.

Finally, anyone interested in reading more about this, there is plenty of stuff out there. See https://scholar.google.com/scholar?...ved=0ahUKEwi1rYmQn7vUAhXDFZoKHQAUBbgQgQMIIzAA
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,326
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Again, Dave, you're tilting at windmills. No one here of whom I'm aware has ever advised another to commit suicide. "Hastening their death," which you also indict, is how many of our members fly free in peace with their CALS' help, as titrating drugs to maximum comfort may have the effect of hastening death but it is not the primary goal. I'm sure you're familiar with the doctrine of double effect. So you can have your minority viewpoint here, but please don't advertise it as a universal moral imperative.

Have you PM'd Alex123 since you cite him as the catalyst for this post?
 
Status
Not open for further replies.
Top