Seven Sisters friends make me angry

[Kelsey]

I'm not sure how it is now but I know when my grandmother had cancer (and was dying) pulling the feeding tube/IV fluids was the only way to shorten the suffering. Otherwise, she's have just lingered on in intense pain that the meds didn't touch. They made her hallucinate but she still screamed in pain. We did have comfort care. We had a 24/7 hospice nurse in the home.

[bananacat]

This is the kind of thing I was talking about on the euthanasia thread. These people would never allow a terminal patient to end their suffering a few weeks or days early, but they ALSO won't allow terminal patients to have palliative care. It's like they have some weird fetish for making others suffer. There are lots of reasons we limit morphine to non-terminal patients, such as long-term health problems from the side effects, or the potential for addiction. And absolutely none of those reasons are relevant to someone who will die soon.

[socalrules]

I think for these type of people, suffering is next to Godliness. Think about it. Many take pride in the fact that their children have been sick for months but refuse to take them to the doctor. They take pride in the fact that they would rather their kids starve every night than seek aid from the state. They take pride in the fact that they may not have heat in the house or that they raise their children on handouts rather than getting a real job. Let's not even talk about the pride in having severely undereducated children. The worse things are the happier they are, because their suffering, and more importantly their childrens' suffering, is like a badge of honor. Reading a lot of the fundy blogs, again and again you can almost feel their glee when talking about something that has gone wrong and how they are "coping" with it. It shows how much "better" they are than everyone else because they didn't take the "easy" route.

Although I am sure the people with the dying daughter love her very much, they will be proud of the fact that she died without evil painkillers. It really isn't about her suffering to them, it is about how it will reflect on them. Otherwise, there is no reason why she shouldn't be given every drug possible to ease her pain.

[valsa]

It's like they have some weird fetish for making others suffer.

Not that weird. There are lots of people who think suffering makes the world a better place. Hell, Mother Freakin' Teresa (who I don't like anyway) said-

The suffering of the poor is something very beautiful and the world is being very much helped by the nobility of this example of misery and suffering

[Koala]

Are you guys just getting updates on 7 sisters blog or do these people have their own?

[gustava]

Are you guys just getting updates on 7 sisters blog or do these people have their own?

My question also, as I went to the link posted by OP and didn't see what others seemed to see.

[holierthanyou]

I only saw the Seven Sisters' sharing on the condition of their friend, but I don't know if other users read more. The information in this thread (i.e. Meredith's diagnosis, current condition, plan, etc) can all be gleaned from the Seven Sisters blog though. You may have to read back a bit.

[bananacat]

Not that weird. There are lots of people who think suffering makes the world a better place. Hell, Mother Freakin' Teresa (who I don't like anyway) said-

This is one of the reasons that I loathe Mother Theresa. She's no better than the Seven Sisters. Any kind or helpful thing she ever did was only for the purpose of gaining power over disadvantaged people and pushing her agenda on them.

[SeaSaltCaramel]

Oh Wow, I have no words to sufficiently express my outrage and sadness at this family and for this girl.

I read through all the updates from the SS on this girl and it's hard to believe some people remain so clueless even with every physician, specialist, and top-rated hospitals are telling you that your daughter has only a 20% chance of living a year more at the most, but only if she gets standard therapy. One post had the comment the doctor made to the mother. He said that if the chance of survival had been better than 20%, he would take her parents to court for refusing standard care. Then there was a post that said she was "refusing morphine :D " and that her mother was glad they left the hospital when they did because she "would be dead from all the morphine they were giving her." On top of all that, when they were making their "tough decisions" on her treatment plan, what they meant was, do we spend tons of money keeping her alive for another year, or do we save money to do this alternative therapy that's going to give us a clean conscience.

It's one thing when an adult makes these decisions for him/herself, but it's baffling that these people are this ignorant and detached from their daughter that they can't listen to the many expert opinions. If a doc is theoretically threatening you with a lawsuit, you might want to rethink your decision.

I know this is all a irrelevant at this point, but seeing how they think that hospitals kill patients with morphine, I'm not surprised that they don't agree with palliative care. The poor girl has the "death rattle" and she's essentially drowning to death with pulmonary edema. Being a respiratory therapist, I've seen this all too many times. It's sad. Just sad.

[clibbyjo]

The girl was first admitted to the hospital on Feb. 3. This is very fast moving,I cannot believe she has gotten so bad so quickly in only 6 weeks.;(

[NurseNell]

The girl was diagnosed with an aggressive stage 4 brain tumor. Her case was hopeless. I do not condemn her parents for seeking alternative treatment. I condemn them for forbidding comfort care and pain relief and fluids.

This.

[HoneyBunny]

I was out of the country and not lurking on SS when this illness started, or at least when the SS started posing about it. Who is Meredith and what is her relationship to the SS? Why did her family choose non-traditional treatment? Was it simply about the money? She's 17...are her parents legally allowed to withhold medical care?

Why do I keep thinking that these are the same sort of people who condemn Obama for his health care reform?

That poor girl. Please, may she no longer be in pain.

[mockingbird]

Ugh, poor girl. I agree it's not that they are choosing not to do standard treatment for a glioblastoma, it's that they aren't giving her palliative care. I volunteer for a hospice and at our training, we specifically covered misconceptions people have about morphine/other pain drugs used for palliative care. Someone else already explained it, but yeah the concerns about addiction or side effects aren't really relevant anymore with hospice. Sometimes they do not feed patients or give them liquids either. It was explained that their bodies become less able to handle food/liquids and it's just part of the dying process. (However they will encourage them to eat or drink as much as possible - there was a patient who only ate ice cream!)

This made me angry (from another post):

"Meredith still has most of her beautiful, VERY long hair, but being on bedrest for two weeks has added quite a few tangles. An aid took her into a treatment room yesterday, before her surgery and worked on a section of hair FOR FIVE HOURS, smoothing and removing tangles. That part has been braided again. When her head is not tender from yesterday’s surgery, they will finish the process with the remaining strands."

Why was no one brushing her hair?? Poor girl :( I don't know if I would expect a nurse/aide to do that all the time but surely her family visited and could brush it? Enough so that when she's able to sit up it doesn't take over five hours to brush it out!!

I had a scar on my head and was not allowed to wash my hair before the stitches came out but my mom washed the ends with a cup of water, she just didn't scrub the top. And every single time I have had surgery/been sick enough to be on bedrest I have brushed my hair or my mom has! It's just a little human dignity!

[figuring it out]

This made me angry (from another post):

"Meredith still has most of her beautiful, VERY long hair, but being on bedrest for two weeks has added quite a few tangles. An aid took her into a treatment room yesterday, before her surgery and worked on a section of hair FOR FIVE HOURS, smoothing and removing tangles. That part has been braided again. When her head is not tender from yesterday’s surgery, they will finish the process with the remaining strands."

Why was no one brushing her hair?? Poor girl :( I don't know if I would expect a nurse/aide to do that all the time but surely her family visited and could brush it? Enough so that when she's able to sit up it doesn't take over five hours to brush it out!!

I had a scar on my head and was not allowed to wash my hair before the stitches came out but my mom washed the ends with a cup of water, she just didn't scrub the top. And every single time I have had surgery/been sick enough to be on bedrest I have brushed my hair or my mom has! It's just a little human dignity!

A little dignity and love. I hope she gets her peace soon.

[Wolfie]

there was a patient who only ate ice cream!

Wait, are you in northern CA? I have a relative who ate only ice cream for their last couple weeks of life. (I'm actually very disappointed that they didn't live long enough to see Ben and Jerry's new greek frozen yogurt, as they adored Ben and Jerry's ice cream and any kind of yogurt too.)

Does anybody have enough information to contact CPS about the lack of pain meds?

[Grania]

I'm so very sad and angry about that. Sad for Meredith, nobody should die (with special torture thanks to her parents) at 17. Angry about the seven sisters and their acquaintances. It's one thing to be sweet and clueless but another to be so ignorant.

I thought about starting my very first topic on fj about that when they wrote the first blog entry about Meredith, mainly about their clueless (ha, again) approach to the suffering a brain tumor brings and also because one of the commenters suggested a treatment with vitamine c as alternative. :angry-steamingears: But that topic hits too close to home and I hesitated and when it became clear that it was terminal I decided not to, thinking they would make her last weeks as pain-free as possible and that it wasn't worth to start a discussion about "standard" and "alternative" treating as it became irrelevant for Meredith.

But letting her suffer without morphine or any other pain killer...I want to punch them! :angry-boxing:

And the prayer request for a new house is just wrong...it seems as if they are annoyed that Meredith has to die at such an inconvenient time.

It just shows what value the life of a child has to those breeders.

[1004srs]

I am a live and let live person for the most part - but holy crap! I can't imagine allowing my child to suffer like that. I'd have hospice involved for pallitive care and counseling for the family.

17 year olds shouldn't die and if heaven forbid they do, it shouldn't involve pain that could be prevented.

[chaotic life]

Not only does food and drink create harm a the end of life, until Obamacare, you could not be signed up for Hospice and coninue with IV fluids of any kind. Obamacare changed the regulaions that MINORS can be full code and still recieve Hospice, but only minors.

As the body dies it cannot process fluids. To give an end of life paient fluids is NOT comforting but distressing. I just had a heated conversation with a hospice intact nurse Friday that since my son's body is not dying but he is having suddent crashes, I will NOT remove all treatments and IV fluids if they are necessary but will trail the fluids at this point. She apparently hasn't processed enough pediattric cases since Obamacare changed the regulattions because she had to step out and consult her supervisor before she understood that while THEY will not administer IV fluids or antibiotics, I *can* adminster them outside of hospice for a minor. For an adult, you cannot recieve hospice if you are continuing antibiotics, IV fluids or even g-tube feedings (unless they were long before hospice began and not related to end of life care).

That said, I provided care for DH's aunt when she was dying from breast cancer. Her family was horrific about her morphine. They were convinced that either the morphine would become addictive, or it would kill her. People do NOT understand pain management in end of life care. My sister is a physician but when our grandmother was dying, I had to fight her to give morphine because she feared it would kill her. Even as a doctor, she was leary of morphine and didn't understand palliative care measures.

With a survival rate as low as this girl has, it's fine to opt out of traditional alleopathic medicine that likely won't work. Itt's not okay to deny her palliative care and comfort measures. It will not gain anytthing for her, and she deserves to die with dignity and not be tortured. Too many, especially Christains, fear those pain meds and think you can ear extra bonus points for the level of suffering at death. They only think this way because they have never experienced dying and their compassion meter is broken.

When we switched to aggressive pallaitive care a month ago for our son, my husband said something that struck me and I wish every person dealing with deal considered. He said, "I don't know because I have never been there, but I imagine it must be very painful to die." Comfort and dignity should be the total focus for dying patients, not fighting the evil morphine.

[Bella99]

Chaotic Life, I'm sorry about your son.

[Koala]

I am so sorry Chaotic life. I can't imagine...

[chaotic life]

Promise, I'm not trying to look for sympathy. Life is what it is and we deal the hand we've been given, which for our family mans hospice now.

I posted because many people, including on this thread, don't understand what happens at end of life and the need to let go of eating and drinking. A dying person does not want to drink. Their body senses that it cannot process the fluids and they stop. When my grandmother was dying, her sister could not handle it. She kept sneaking her drinks, and I kept begging the hospice nurse to try to get through to her that she was causing distress and could potentially choke my grandmother. I knew her heart was in the right place, but she felt it was tortture that Grandma stopped drinking and I let her stop.

My son's body is not yet shutting down like that. He is trying to die everytime he gets sick, and since it is his liver causing the issues, eventually we will be unsuccessful at stopping the crashes. Right now, he needs fluids and his body responds to them. When the body shuts down and is dying, it does nott respond to fluids but drowns in them. It is not poor care to stop giving fluids to someone who is dying. This is actually one of the big things beyond advocating for proper pain management that hospice is really good at addressing. I wasn't aware that Obama changed the rules for minors. I really thought we were going to have to not get hospice services yet because I am not ready to wihdrawal fluids, not while his body still responds. As of 18 months ago, you can provide full life saving care for minors and still recieve hospice. Obama felt the services and support for families facing dying children was too valuable and too few families can reach the point where they can let go before death wins anyway. If this girl were 18, she couldn't recieve hospice and still get fluids. Adults cannot. It's part of the requirements for hospice.

MOre than that, there's no way she's getting hospice. The family is proud she is refusing morphine. My grandmother had never taken anything but tylenol in her life and was very resisitive to morphine too. I used the subliminal drops and comforted her tears, but I watched her in pain when she was refusing it and was not going to let her be in pain. It's not courage to refuse morphine when you are dying. It's crazy ideas that the morphine is bad and will hurt you.

I realize this girl has deteriorated quickly. However, for her sake, her family should be listening to hospice and learning fast how death occurs and what support and comfort she is entitled to.

For my husband's aunt, we hid the morphine patches and gave her the sublinguals when her family was out of the room. Her husband didn't have it in him to fight her parents but couldn't watch her suffer either. When she died, her parents were congratulating her for her "courageous" stance to take no morphine. I just rolled my eyes. She was WELL comforted at the end, we just hid it from them so they would guilt her or hassle her husband for it.

[NurseNell]

also because one of the commenters suggested a treatment with vitamine c as alternative. :angry-steamingears:

In Israel high dose VitC is given intraveneously for stage IV cancers. There was a man on my ocular melanoma list who had mets to his liver. He swears it was the high dose VitC that gave him an extra year of life.

[debrand]

For my husband's aunt, we hid the morphine patches and gave her the sublinguals when her family was out of the room. Her husband didn't have it in him to fight her parents but couldn't watch her suffer either. When she died, her parents were congratulating her for her "courageous" stance to take no morphine. I just rolled my eyes. She was WELL comforted at the end, we just hid it from them so they would guilt her or hassle her husband for it

That is horrible! I am glad that you were able to provide relief for your aunt but I can not comprehend why anyone wouldn't want their loved ones to feel comfortable during their last moments.

edited for a slight correction

[clibbyjo]

Meredith died yesterday.

[Koala]

Meredith died yesterday.

Oh god that's awful. She was so young...