Wil Dubois

Welcome back to our weekly diabetes advice column, Ask D’Mine, hosted by veteran type 1, diabetes author and educator Wil Dubois.

This week is a downer, for sure, so make sure you have your tissue box handy... Wil responds to a scared sister's question about her brother, whose life may no longer be worth living. It's a delicate conversation, and Wil does what he can to help.

Read on…

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Beth, type 3 from Massachusetts, writes: My brother received an accidental insulin overdose and now has brain damage. He is wearing diapers and will never be the same. Should his family discontinue dialysis?

Wil@Ask D’Mine answers: This. Totally. Big time. Sucks. I am so sorry this has happened to your brother and your family.

I can’t tell you what to do. Only you and your loved ones can make this call. But there are a few things here that we can discuss: For your brother, for you, and for our readers.

First, let’s be clear about what stopping dialysis is and what it isn’t. Stopping the treatment is fatal. That said, it’s the right of any patient to stop any treatment, and most of the world’s religions do not regard this as suicide—although not everyone agrees.

Still, your particular situation is waaaaaay complicated by the fact that your brother doesn’t have a functioning mind to make this kind of decision on his own. Really, this is more like one of those agonizing cases in which a person is on life support and brain dead. Should the family pull the plug? Because let’s be clear, ceasing dialysis in this case is a slow-motion way of “pulling the plug.”

How slow?

It depends on his overall health, but the average life span after ceasing dialysis is ten days. That’s for a person who’s been on dialysis for at least six months before quitting. Some people linger longer, some people go more quickly.

I’m told it’s a painless death, for what that’s worth.

Now I’m assuming that your brother didn’t have an advance directive, a.k.a. a living will. If he’d had one, you and your kin wouldn’t be in this mess. A living will is a legal document that makes it clear what your wishes are for your medical care, should you be unable to make and communicate your desires. Most folks think it only deals with whether your heart should be re-started if it stops, but advance directives are much broader. Beyond resuscitation and ventilation, most advance directives specifically address dialysis—along with feeding tubes, medications, and even organ donation wishes.

Oh, I almost forgot to mention. A living will isn’t always a “don’t do anything” document. It could also stipulate: Don’t pull the frickin’ plug! Ever!

Every adult should have an advance directive. They’re easy. While it’s a legal document, you won’t need a lawyer to make one. Start with your family doctor. Of course the paperwork is the simple part. The hard part is telling your knucklehead family what you want. And don’t think that simply telling your loved ones what you want will do the trick. Under stress, families have a hard time with end-of-life stuff. You need the paperwork to ground the members of the family and remind them that they are respecting your wishes.

Life SupportBy, the way, Beth, do you have a living will? If not, why the hell not? Of all people, you should know better.

OK, now back to your bro. In the absence of an advance directive in a horrible situation like this there are two things to consider, and frankly, I give them equal weight. The first is: What would your brother want? And the second is: What’s best for the rest of the family? Most people ignore this second question. Don’t. More on that in a bit.

Starting with you brother’s likely wishes: Is there a consensus in the family that he wouldn’t want to “live” like this? Are your siblings and your parents on the same page? Who got stuck holding the medical power of attorney? That one person in the family will end up signing the forms that will send your brother into the afterlife. The worst possible thing would be for that person to be accused down the road by another family member of killing your brother.

Families rarely see eye-to-eye about end-of-life issues, which is why that damned advance directive is so important.

Now the tough one. I don’t know how bad your brother’s brain damage is, but between changing diapers and schlepping him to dialysis three times a week, it sounds like he needs a lot of care from the family. As he’s more of a doppelgänger than a living person, I think it’s fair to consider whether his misfortune is dragging the rest of you into some sort of hell from which there is no relief.

When people actually die, there’s always talk of the family needing to move on. When people linger in the grey curtains between life and death we have a harder time focusing on the rights of the living over the rights of the nearly dead. You have my blessing to ask not only, “is his life worth living like this?” but also, “are our lives worth living like this?”

The impact of his near-complete disability on the rest of you shouldn’t be the deciding factor, but it needs to be part of the discussion. And make sure that whatever member of the family is most vocal about keeping him alive is willing to share in the work, because this’s often not the case.

Of course there’s one piece of information missing in your letter, and that’s: How old is your brother? I was alarmed when I read that he “received an accidental insulin overdose.” Wait a minute, I thought, why wasn’t he taking his own insulin?

Maybe he'd been on an insulin pump and for some reason that led to unintended dosing?

Or is he a child?

If he’s a child, this just got a whole lot more complicated because children have no sense of mortality. You can’t know what their wishes are because they have no context in which to make that decision or to have ever discussed it in a realistic way. And if he’s very young you need to consider: What are the odds that future technology could repair some of the brain damage?

Not that you should pin too much hope on that.

But assuming he’s an adult, it’s a bit easier. Of course, every adult is someone’s baby, I get that. This is an awful decision, but if you think about it, it’s simply a math problem. An equation with only one answer. To solve it, you need to assign weights to three variables: What he would want? What is the quality of his life and prospect for improvement? What is the impact of his current health and helplessness on the lives of those around him?

Your family should be able to figure out what his wishes would have been. Just be sure to step outside of your own souls here: Each family member needs to be careful not to project what they personally would want over what they think he would want. You need to listen carefully to the medical pros on the prospect of improvement. Then each of you needs to think about the caregiving burden on the family, and weigh that against his quality of life, if any.

I don’t know what you will do. There’s no 100% right or wrong answer here. In the end you’ll have to weigh the math and hopefully you will all agree on the answer.

And right after that, you need to sit down and draft living wills—all of you—so your family will never have to go through this again.

Disclaimer: This is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.