How responsible am I for my loved one's choices?

Posted By
POW
12/12/2012 5:30pm
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POW
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Replies: 2

My brother was diagnosed with Stage IV melanoma in June 2012. This came out of nowhere and at the time of diagnosis he had mets to the brain, lungs, adrenal gland, intestines, and some lymph nodes. His condition was deteriorating rapidly and several doctors told us that he should get his affairs in order and contact hospice. The prognosis was 6-12 weeks. What a shock!

My brother lives in Tampa and I live in Atlanta. I have a PhD in biochemistry so I'm really good at researching information and talking to medical people. For most of my life I have been our family's resident "medical advisor". When someone in the family has a medical problem, they call me and I find out the facts, the best places for treatment, the important questions to ask and so on and I am comfortable in that role. I am not a physician; I don't try to be a physician. But I do try to separate the wheat from the chaff in terms of treatment options. I'm very good at explaining technical concepts to family members, and I'm good at identifying the pros and the cons associated with each option. My goal is to give my family members the information they need to make the right choices for themselves. 

Whole brain radiation followed by Zelboraf helped my brother a lot. All of his tumors shrank or disappeared. But after 5 months, the tumors are becoming resistant to Zelboraf and are starting to grow again. He asked me to look into possible clinical trials for him. Of course, I am happy to do so. But trying to help my brother find the best clnical trial for him is making me very anxious. I think about it all the time. I lose sleep about it. My anxiety is making me be controlling and demanding and irritable with all the "medical idiots" I have to deal with. And since my brother values peace above all else, my drama is upsetting him. Not good!

Today, I finally figured out why I am getting so upset about this clinical trial business. In the first place, there are no "good" options in clinical trials. The purpose of a Phase I trial is determine the maximum tolerated dose of a drug. In other words, they give the patients higher and higher doses until the patients get so sick they have to stop. Yes, one might be assigned to the lowest dose group, but will the lowest dose kill the cancer? Phase II trials refine the dose tolerability, look more carefully at the side effects, and try to determine if the drug is doing any good at all. Often, they are found to have no significant effect. Not exactly a ringing endorsement for Phase IIs. By the time a drug gets to Phase III trials, they have a pretty good idea about the side effects (in a small group of patients) and some indication that the drug works (in some people). But now you have a control group. The control can be a placebo or the current "standard of care" treatment. However, since there is no decent standard of care treatment for melanoma, if you're assigned to the control group, you're basically screwed. So how do I advise my brother about clinical trials? Should I advise him to take a Phase I or a Phase II because at least he will be getting the drug? Knowing that he's probably going to have some nasty side effects and perhaps no benefit? Or do I advise him to go for a Phase III trial of something that has been shown to be effective, but he might be assigned to the control group, which could be worse than doing nothing? 

And I know my brother. Peaceful, easy, and laid-back is what he wants in life. He hates people fussing over him. He hates slogging back and forth to doctors and hospitals. He would hate to get stuck in a trial where he has to go to the hospital every time he turns around to get infusions, blood draws, scans, etc. Especially when all these trips and all this poking and prodding is NOT necessary for his treatment, but they are necessary to gather data about the drug. And what about cost? Yes, the trials themselves are free. But sometimes you have to get tests to determine if you are elegible for a trial and those are not covered as part of the trial. Am I going to be recommending a clinical trial that ends up costing my brother a lot of money and causing him to stress out about finances during the last months of his life? That's not doing him any favors. 

I know that everyone who thinks about clinical trials wrestles with these issues. And I know that the final decision about which trial to do, if any, is up to my brother. But he trusts me. He values my advice. And he really is very sick and doesn't have much energy to parse all these choices himself. I don't want to make a mistake. I don't want to encourage him in the direction of a trial that is going to make his life worse rather than better. I don't want to feel that I am responsible when he's heaving his guts out as a side effect of the "maximum tolerated dose" of a Phase I drug. I don't want to feel responsible when his condition deteriorates rapidly because he got put in the control arm.

I DON'T LIKE BEING IN THIS POSITION!  But if I want to help my brother in a way that only I can, this is what I must do. And I must try to do it with a smile on my face so he doesn't think that he's causing me upset. UGH! I hate this disease!!

I'm in a different situation, but I understand where you are coming from.  My father is stage IV, but was diagnosed stage II about 7 years ago.  I knew a lot about melanoma even then so I was the one who went to all the appointments, etc.  He was 81 at the time and so his position in life was much different than your brothers.  About 1.5 years ago, he advanced to stage III.  He's had other cancers but the melanoma is the issue.  He turns 88 next month.  The problem I have now is that he goes to the appointments, jokes with the doctors, but expects me to ask the questions and figure out what's best for him.  I am making all his life decisions.  He doesn't have the energy to even consider what's going on.  He doesn't want to bother with learning, just living.  So I get your researching prowess, I understand the clinical trial process (worked for a medical device manufacturer for years so been on the other end of clinical trials) and I get dealing with patient fatigue.  There are no answers.  I think the best you can do for your brother is weed through the options and come up with maybe a Phase I or II trial, a Phase III trial and an approved treatment option.  Pick the best of the categories.  Too many options are just that -- too many.  But if you can weed out the stuff that isn't really a good choice -- as you say, too many doctor visits or infusions or whatever... then you've done your brother a great service.  You still let him choose but you narrow the list to the best.

Good luck!

Janner

Thanks, Janner. It's reassuring to know that other caregivers find themselves in the same situation. Your description of your father joking around with the doctors and leaving all the medical questions up to you is exactly what happens to me. I would swear that my brother doesn't really care whether or not he gets treatment. But when I push him on it and ask him "Are you SURE you want to try another type of chemo?" he say, "Yes! Absolutely!" So I will follow your advice and narrow the clinical trials down to 2 or 3 choices and try not to feel personally responsible for the outcome. Thanks for the advice.