Faculty Q&A Discussion: Communicating with Patients

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You have to impress upon patients that just because you are changing the aim of treatment, it does not mean you are changing your deep commitment to their care.

— Joseph M. Connors, MD

 Dr. Armitage: As oncologists, we face many challenges. I think the most difficult is when you say to a patient with a disease everybody expects will be cured, and every patient expects to be cured, “It is not worth trying to do that. It is time to worry about keeping you as well as possible for as long as possible but to quit taking chances.” When do you think you should do that, and how do you tell the patient? I would like to know how all of you do that.

 Dr. Connors: As you have said, it is very challenging. Expectations are very high. Even at the time of relapse, when we can turn to an autologous transplant, expectations stay high that the patient is going to be cured. However, I think it is very important that we not succumb to the temptation to put off this discussion because I think patients deserve to understand what they are dealing with.

I often see the choice made to use multiagent chemotherapy to manage what has become an incurable condition. The difficulty there is that the patient experiences all the toxicity of all the agents, but maybe profits from improvement brought about by only one or two of those agents. And if you combine drugs, you have to compromise the doses of many of those drugs. I really do think it preferable to settle upon optimizing the dosing and scheduling of one agent, understanding whether it is working or not, and using it to maximum utility.

But to return to your question, I think that this is the point at which you have to thoroughly impress upon patients that just because you are changing the aim of treatment, it does not mean you are changing your deep commitment to their care and to speaking to and helping them cope with all of the challenges the disease is going to bring their way. Reassuring them that many patients in this situation have excellent quality of life for months to years if they are properly managed with appropriate therapies.

 Dr. Armitage: What do the rest of you think?

 Dr. Engert: First, there are quite a few ­differences among these patients. Some patients relapse very early after transplant, have a very poor prognosis that is comparable to pancreatic cancer, for instance; others relapse a year or more later and have a much better prognosis, although in the past, these patients usually were regarded as incurable. Some patients (but not many) are being taken to allogeneic transplant. There is a good chance that these patients will live for many years, and it would be too early to approach them when they relapse 2 years after transplant and say, “Well, you are going to die soon”—that is certainly not appropriate.

Others have gone through many rounds of treatment and feel themselves that they will not have too many more rounds. These are the candidates we speak to, explaining that what we do is aimed at improving their quality of life so that they can do what they like to do as much as possible, and that we have to find the balance between reducing disease activity and keeping them fit. That is something most of them want and understand. In a way, the patient is a partner in that process; very often patients feel much more and know much more than we doctors think they do.

 Dr. Horwitz: These are hard conversations, but we have them often. Frequently, it first comes up in the setting of when patients relapse and they are referred to autologous stem cell transplantation. Many patients ask at that point, “What if this does not work? What happens then?” That is often the first time the possibility of not being cured arises.

If a patient continues to relapse several times, we make these decisions very individualized. The hard conversation often arises in the setting of an allogeneic stem cell transplant consult, when we’re explaining how that works and what those results are. Sometimes you can come together on a plan, but it is very difficult transitioning people to accept the idea of not being cured.

We often use investigational therapies in this setting, not only to look at new therapies but also as a way to avoid having that conversation or to minimize the anxiety, because you can get excited about something new and different.

 Dr. Armitage: Usually in a situation like this, when things are not going well, we assume that the new symptom or the new image abnormality represents the disease we are treating. There are probably sometimes when you should not be making that assumption and you better be thinking about doing a biopsy. So, what are the hints that this apparent treatment failure really is not a failure and you had better be working it out?

 Dr. Connors: It is very important to be skeptical about the explanations we provide for any of these findings. When the disease has come back and caused exactly the same problems or is in exactly the same place, you are on somewhat safer ground. As soon as anything is atypical, does not match up, you should question it, and if in any doubt whatsoever, you should think about biopsying the disease for two reasons.

First of all, it could be nonmalignant or it could be a different malignancy. It is important to remember that some of these patients relapse with non-Hodgkin lymphomas, or sometimes other cancers appear at this point, and you would not want to make the wrong assumption. So a biopsy may be exactly the right thing to guide the decision-making. ■

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