Thanks for this great post, Dr. West. You bring up some very challenging questions. While I’m not an oncologist, I’m often involved in these discussions of prognosis as a palliative care consultant and as a resource for patients and families. A few things that I like to keep in mind in considering these issues:

–First of all, these are hard discussions for everyone involved, including patients, families, and physicians. I think it’s important to keep in mind that everyone has good intentions in bringing up these hard topics.
–I agree with an individualized approach as Dr. West mentioned. There can be tension between the distress caused by talking about prognosis and the distress caused by not talking about prognosis. This balance is different for different people, and different even amongst close family members. It can be helpful to initially talk about how much information a patients wants to have to guide the discussion.
–Discussing prognosis is a process and not an event. It takes time to digest information and then consider treatment decisions, and sometimes it’s helpful if the discussion happens in parts.

As to the timing, it’s difficult to arrive at a hard and fast rule. I will say, though, that these discussions become harder if a patient is unable to communicate due to complications of the cancer or if there is a major crisis in a patient’s care such as being admitted to the ICU–these are all additional stressors. In general, if these discussions can occur before major crises happen, that can relieve some of the pressure that would otherwise make a tough situation worse. This has been some of my experience with my patients and their families. I am certainly interested in hearing what people at GRACE think as well.

–Dr. Harman

Dr. Harman wrote: “Discussing prognosis is a process and not an event.”

An excellent point, which recognizes that there are many unknowns, especially at the beginning of a person’s treatment. Someone who is still doing well at 18 months when the median survival of his/her group is 12 months will have a different attitude toward survival curves and statistics than one who was diagnosed just last week.

Ned

My only experience with this is my own. I can’t imagine how difficult this conversation must be for the provider. I was told the same thing by 2 different doctors with very different approaches. The first onc, when I asked about my prognosis, said ” I have to say you are considered incurable”….AND THEN WALKED OUT OF THE ROOM!
The second onc, when I asked the question I already knew the answer to, said. ” Today, September 2007, I have to say you are incurable. But, until we have some history with YOUR cancer, it is impossible to say what kind of time might be involved.”. Needless to say I stuck with the second Dr. He has always delivered straight forward, honest and realistic answers measured with a dose of hope and compassion. I couldn’t ask for more for myself. I too like Dr Harman’s statement that discussing prognosis is a process, not an event. A process that must be individualized much as Dr. West describes trying to do in his practice. I think that all any provider can do is try to feel their way through the process, learning from each patient, each experience so that maybe next time, they will be a little better at it. The patient, on he other hand only has to do it once (and therefore has to get it right the first time

As I mentioned in my post, my style has changed from necessarily starting these discussions at the first meeting to taking some cues while working with a patient. That said, Dr. Harman’s mention of the ICU admission reminds me that all too often I find myself cross-covering for colleagues who have patients very well into treatment, often gravely ill, who seem to not have any real concept of what to expect in terms of prognosis, even if that may be limited to a rather short period of time.

It’s quite easy to table discussions of harder topics based on good intentions, and a desire to avoid the bumpy road that will in some cases challenge the relationship between patient and oncologist, but at some point I fear it’s negligent and a real disservice to the patient to sidestep these issues. And while we can probably agree that it’s important to have these conversations at some point, I can assure you that in practice some of the people who don’t have these conversations early in their relationship with the patient will let it get to a point where a strange doctor in the emergency room or ICU is forced to broach the topic in the midst of an urgent complication.

-Dr. West

Great topic! I would also like to mention a separate but related topic, which is prognosis questions by family members. I am MUCH more frequently asked by the children or spouse (usually a son or husband for some reason) during the initial consult “How much time does she have?” rather than by the patient themselves. Often the patient looks horrified or terrified at that question, so I always ask them directly if they want to have that conversation now or defer it to later. Most of the time they agree to discuss it, but I get the feeling that they often would rather not and feel pressured into it.

I think that families are quite naturally asking themselves that question, but perhaps don’t always take into account what it means to the patient to have to hear a finite limit put on their previously indefinite lifespan.

My instinct would be to keep it fairly vague at the start for two reasons - one, it takes patients and families at least a month or two to get over the shock of the diagnosis and start to think straight about the treatment options, not to mention ingest and process the absolutely massive amounts of information they really need to know about this most complex of diseases.

Second, it’s my impression that as Dr West says,until the oncologist gets an idea of how the patient is going to respond to the treatment, s/he can have little idea of how things might go.And given there is such a wide range of outcomes, with some cancers being fearsomely aggressive and killing the victim in months, to others indolently meandering away and going to ground often for years, that perception is very important.

As he also said in a recent post,what he and colleagues are seeing on the ground with lung cancer is at variance with the statistics which can be out of date and misleading . (Though I saw a useful recent one in the UK that over 50% of cancer patients survive and go on to normal life expectancies - that made me feel that at least one of the summits had at last been scaled).

I’m delighted to have found this website which is far and away the best resource I have seen, particularly on lung cancer.Access to the info you’re seeing and the thinking behind your judgements is greatly appreciated. Obviously I’m one of those patients who copes much better when well informed - while for others practically any information is devasting and emotionally draining, but many more people are getting much better informed about health issues these days.I’m wondering if we patients can offer any help - perhaps in writing more on how things work for us? Reporting on effective home or alternative remedies to mitigate side effects springs to mind as a topic where we might be able to provide useful input.

Those are all very good points. I agree that how a patient is responding to treatment is a huge factor that helps give us a much better idea of what to expect, so that it’s arguably premature to talk about prognosis in anything but the most general terms before we get an idea of the underlying pace of the cancer, how a tumor responds or doesn’t respond to treatment, and how the actual person tolerates treatment. These are all crucial factors that help us shape a more meaningful estimate of what someone might expect.

Thanks for your input and for your very kind words about GRACE. I and the other contributors are proud to offer information that is very helpful and not just more of the same experience available elsewhere. And we agree that there’s a great unmet need for this content.

-Dr. West