Terminalcoffee discussion

I can't say I have a problem with the parents' decision. I mean, how can you criticize parents for wanting to squeeze an extra six months of life for their baby? On the other hand, this is one reason why America's healthcare is the most expensive in the world - because American doctors, hospitals and patients make decisions to extend expensive end of life care like this, and many other nations don't.

What a sad sad story. The baby is dying from the same disease that killed their other brother. I have no idea how I would react in that situation, so I can't pass judgment.

I do know that Canada also doesn't allow CCSVI - a very simple treatment available for MS that does relieve symptoms. Won't get into more details except that it's ballooning narrowed veins that carry the blood from the brain - the backlash causes the lesions. It's been proven almost revolutionary and quite successful, even if for many short-term for many if they prefer not to have stents. SO far there have been 2 Canadians who got it out of country, developed some easily resolved stent problems, but Canada wouldn't let any of their doctors fix it. So by the time one guy went overseas to get it done, it was too late and he died.

I'm hearing a lot in the news about Canadians going abroad for 'better care', or treatment options not available in Canada. They termed it 'medical tourism'. I can understand if people are going overseas for treatments that improve quality of life, such as a rare kind of knee or hip arthroplasty (parts are unavailable in Canada). They get what they want and all are happy.

But to seek treatment across borders for palliative care sounds a bit extreme to me. It's not like the doctors had given up, I'm sure they've explored all viable options before bringing up the decision to remove life support. Relocating an 18-month old battling terminal illness to a foreign health care system with little or no continuity of care; is it worth the risk? The goal of palliative care is not to extend the life, it is to promote dignity, respect and comfort as the patient fully lives their lives to the end (however short this case proves it to be).

In my limited experience in the nursing world, end of life care is very tricky, especially when we are advocating for the patient but in most of these situations the patients are voiceless and it's up to the family members to decide.

Moral of the story, it's never too early to start writing your wills and advance directives!

Agreed.

Still, I think the problem I'm having here is the govt deciding who should get what. Should the govt have the right to pull the plug? If the govt is paying for it, and the parents in this case are clutching on to what seems to be a vegetative child, then yes, I guess the govt can decide. It's very expensive.

But then what else should they control? Because IMO, many procedures that are not deemed "medically necessary" are denied because of the power of the Pharma. Better to give drugs to alleviate the symptoms, then perhaps fix the problem.

The government may be paying the hospital bill but assuming the parents have been paying their taxes, they paid for their child's health care.

And the Canadian health care system is controlled by the public, in that physicians and health care professionals are regulated by the 'college' in that province, they abide by legislation but are self-regulated, on the premise that the college act first and foremost to serve the public interest.

Yet you're right that there are many procedures now that are not funded through the public health care system, for the interest of protecting public safety. For example, re: the CCSVI treatment, CCSVI.ca says, "At this time, provincial governments and colleges of physicians and surgeons have concluded that there is not enough evidence to support CCSVI treatment." So until it becomes hardcore evidence-based medicine it won't be endorsed by the college to be made available to all Canadian citizens.

I think as parents we do whatever we can when it comes to our children and what we perceive to be in their best interests. In that respect, I cannot fault the parents of this child.

I also cannot fault the hospital who also did their best to maintain the life of this child as far as they determined was in that child's best interest. The courts are not brought into decision making of this kind unless it concerns the endangerment of a minor. I remember a case where a child's parents were refusing a life saving blood transfusion for their child based on religious grounds. The child was made a ward of the court, received the blood transfusion, and lived as a result.

When people leave Canada to obtain medical treatment, it is often for treatment that is experimental, controversial, or still in developmental stage and has not been approved by the FDA in Canada.

In response to Lori, CCSVI is still under development and assessment. http://ccsvi.ca/questions.html#what-i...

I agree with Hanna in that it's important for every adult (a little edit there) no matter how young or old should have a "living will" or "advance directives" so that if there is ever a question about removing a breathing tube, or life support, your loved ones don't have to anguish over making that decision.

I am so impressed you guys looked up CCSVI! It's a hot topic in the MS community. There's a ton of misrepresentation about it in the press. And both MS Society US and CA are conducting "studies" but the head neurologist has said the plan is to DISprove it. I could go on and on. The MS Societies are supported by Pharma. The CEO makes 400,000 a year in salary. You're right, it is very new, and studies outside of CA are going on. I'm proud to be part of the study.

Anyway, that's my personal peeve. I don't mean to pick on CA health, I'm jealous in many respects. I've heard great things about it.

In this case, I can't fault Canada and I can't fault the parents either. From the outside, it seems like a waste, if the child is in fact a vegetable. But if it was my kid?

wow I didn't know it was such a personal issue, Lori! Good on you for being part of the study!

Yeah sorry, I was on my personal soap box there. *blushes*

I took so long to ponder over just the right words in my post that I missed messages 6 & 7.

I took care of a pt with MS last week and I nearly cried with her as she was telling me how she felt like the doctors were ignoring her and becoming more distant. She was becoming more hopeless because she couldn't even open her laptop whereas just a few weeks ago she was able to function more independently.

MS is near and dear to my heart. I have several friends with the disease. One woman, Florence, said that MS was a complication. If she got a cold, she just didn't have a cold. It was a complication with the MS. She died at the age of 55 from liver cancer. Another friend was diagnosed at the age of 17. She had a rapid progression of the disease and was in a wheelchair within a few years. She died in her 20's from pneumonia. Yet, my other friends have been living with MS for many years in remission.

Janice wrote: "Another friend was diagnosed at the age of 17. She had a rapid progression of the disease and was in a wheelchair within a few years. She died in her 20's from pneumonia."

Oh that's just too sad and discouraging, to die of something so preventable and treatable as pneumonia! I'm sure it takes a great toll on the immediate caregivers and their friends but with good care and easily accessible respite services, I've seen patients enjoy their lives in remission for years. I can't stress enough the importance of great family and friends who are by their side...you guys make all the difference!

Hanna, where are you and where is your patient? The MS Society ticks me off in a lot of ways, including the salary Lori mentioned and the funding from Big Pharma, but the local chapters are often very good and maybe they could provide an advocate to go to doctor's appointments with her?

If I see her again I'll refer that information, thanks!