How Patients Make The Treatment Decisions

The British medical journal BMJ Open has an interesting article this month called "Treatment Decision Making (TDM): A Qualitative Study Exploring the Perspectives of Patients with Chronic Haematological Cancers." It looks at a small number of patients with chronic blood cancers (35 patients in all, with 8 of them being Follicular Lymphoma patients), and what influenced the decisions they made about which treatments they decided on.

The results aren't all that surprising to me (the patients considered a lot of different factors), since I communicate with so many FL patients. But it is interesting to see the thought processes behind the way people make those important decisions. 

The patients in the study had a few different chronic blood cancers (FL, but also CLL, MZL, and Myeloma). By "chronic," the researchers mean a cancer that is likely to come back -- the kind we live with for a long time (I'm sure you all understand what that means). Because our cancers are likely going to need several different treatments over our lives, we probably have more things to consider when it's time to chose a treatment. (Thinking of people I know who have had aggressive cancers, they seem more likely to say to a doctor, "Yes, whatever you say, just make it happen!") But for us, we (and our doctor) are more likely to have to consider things like quality of life, and which treatments we've already had, and what might be available soon. It's a more complex process.

And that's basically what the research found.

The researchers ultimately found five themes in the interviews:

1) Preference for Clinician Recommendations. While most of the patients in the study wanted to have a discussion with their doctor (though a few had the "Yes, whatever you say!" approach), almost all wanted the doctor to make a recommendation. This makes a lot of sense to me. As much as I know (or like to think I know) about current treatments for FL, I still want my oncologist to tell me what he thinks. He's read the literature, but he's also seen hundreds of patients, and seen how the treatments worked for them. I want his input. I need his input. I don't want to make that decision on my own. That would be foolish. But I want to make sure he knows what is important to me.

2) Factors Implicated in Patient Involvement. This theme got into why certain patients wanted to be as involved as they were. Some patients do want a lot of input, and others don't. There are a lot of factors that influence this, including how complex the decision will be, how much support the patient has from others, and their emotional state. Again, this makes a lot sense to me. Even for someone who is highly informed, there are lots of things to consider. That could even change day to day.

3) Proactive and Non-Proactive Approaches. This was more about what kind of person the patient is, and what they have access to, that allows them to be proactive about treatment decisions. Some people have the time, the internet access, and the personality to do the kind of research that allows them to have a voice in the decision. Others don't, though they may wish that they did.

4) Experiences During the Disease Trajectory. Here, again, is a theme that make s a lot of sense. Patients might behave differently at different points in time. Someone who has just been diagnosed might be more likely to say "Yes, sure, whatever you say, doctor." But someone who has been living with the disease for years, and maybe has already had a few treatments, might be more willing to say, "OK, thanks for the recommendation, but can we talk about this other treatment, or this clinical trial, as another option?"  

5) Support from Others. The final theme is about the importance of having input from people other than the doctor. This might mean having someone at an appointment who is clear-headed enough to ask questions and take notes (a very good thing to have). It might also mean having someone at home, after an appointment, to talk through a decision with. As great as it is to have a doctor who can be trusted, it's also great to have a friend, or a family member, or a caregiver to talk things through with. I've been on both sides of this -- having a loving wife who I can talk things through with, but also getting emails from some readers asking for my opinion (which I'm happy to give). It helps to talk, whether it's about the treatment itself, or about other issues, like your fears and worries. It's just easier to agree to a treatment after you feel like you've considered it thoroughly.

These general themes give a good sense of how many different factors we have to consider before we make a treatment decision. They also give some good advice what you might want to think about when the time comes to make a decision.

But I would recommend you read the article (it should be available to everyone, since the journal is open-access). It includes lots of quotes from the patients who were interviewed for the study. It was interesting to me to see how they made the decisions they made. I'll bet many of you will see some of yourselves in those quotes.

I hope none of us need to make any treatment decisions anytime soon. Good luck to those of you who do.