Self

Scenario

You are about to enter a clinic room to see your next patient when the family rush up to you and tell you that you shouldn't say anything about cancer to the patient.

Tasks

• What reply do you have for the family? (a transcript please)
• Give an account of the issues of suicide, depression, knowledge and positivity in cancer.

Opinion

What the oncologist had to say ....

The first event is something that you will come across often enough to have a way to cope. The problem exists between the predictability of people's reactions, the fears of the family and the dictates of our legal system and the realities of the medical system. These attempts to hide cancer news from patients is particularly prevalent among the Europeans and Asian cultures. In fact almost to the point where if you see the doctor and he tells you nothing, it's probably cancer.

Lets look at the issues.

The predictability of people's reactions is the excuse expressed. "If you tell him he will …"

1. die
2. become depressed
3. take his life (we rarely hear of suicides after we have seen the patient to tell them about recurrence or actual prognosis)
4. never recover
5. etc, etc.

But what evidence do we have that this is the case? Certainly there are anecdotes of patients being told they have cancer and then killing themselves. But are we responsible for the ways that people wish to handle their new knowledge. If this were the case we would have no cigarettes, alcohol, sex, food, doctors …. believe me there is a long list of things that we can write if you wish to take away everything which could have a disastrous consequence based on how people handle it. I spend my first 18 months in Oncology asking all patients during the consultation "Are you the kind of person who wants to know what's happening? Or do you just want us to get on and do the right thing?" In only one case was I told "I don't want to know", and his wife said "Yes, but I do, so you can tell me anyway". The rest made comments like "It's my problem, sonny, I'd like to know what it is". And the difficulty in asking the undiagnosed what they will want to know about their cancer is that they don't have it, so they aren't really expressing opinions that should have any impact on oncological conversations.

The fears of the family are really what is driving these requests. A cancer diagnosis carries with it loss of control, and a cultural fear response that is deeply ingrained. Loss of the relative is assumed to be a certainty (which it is, but not because of the diagnosis but because of the birth). The misinformation of a host of friends comes into play. One of my relatives was told by a friend that the chemo makes your sweat smell terrible, so she washed her bed linen every day for the duration of the chemo! Every one has a story about radiation or chemotherapy and how bad it is. Sometimes if you dig a little deeper you will find that one case might be represented by several people. (My wife was doing an anaesthetic term when she asked my why all the larynx patients need emergency tracheostomies because every anaesthetist had a horror story about a larynx patient. After talking about then cases, it turned out that there had been two, and the other 10 or so that presented between them had not been near the anaesthetic department!)

The dictates of our legal system are clear - you have a responsibility to the patient to provide them with information before they consent to treatment of any type. That goes for a cannula! How much more for a 7 week course of radiotherapy or 12 months of chemotherapy. If you don't tell the patient and they take exception, you are up for court-martial! If you don't tell the family because the patient wanted privacy, you are protected. Of course the happy medium is that the patient consent to their family receiving exactly the same information that they do.

The realities of the medical system are that it is nearly impossible to get everyone to hide things from patients. There are too many people seeing the patient. Next it is hard enough to provide care for patients who are fully informed without adding to the burden.

As a corollary, there is the issue of seeking advice from other doctors and inevitably using names. Can I be prevented from doing better by a patient's desire for secrecy? What do you do in that case?

Following this some reflection on the issues of suicide, depression, knowledge and positivity in cancer.

• Positivity

Can you be positive about something that you don't know about? Is that positivity or IGNORANCE?
If you accept the evidence that 'positivity' affects cancer outcome, can you accept the evidence that prayer improves HIV outcome?
Do you need to have a particular quality of life to be positive, or does positivity give you a quality of life?

• Knowledge

Knowledge can be too little, as above, or too much. What is the point of knowledge when it requires no action? There is the "I'd like to know" issue, but what is very obvious to all oncologists is that there are people for whom knowledge induces anxiety, and others for whom knowledge reduces anxiety. In the prostate area is the PSA watcher, a male who thinks for 6 weeks about what his last 3-monthly PSA means, and then worries for 6 weeks about what the next 3-monthly PSA will be. And do you know what? Most of the time, IT DOESN'T MAKE ANY DIFFERENCE! So why check it?
The next problem of knowledge is that once known, it can't be unknown (unless you have a sieve-brain like me!). So why tell the asymptomatic patient about the metastatic disease that is not going to be treated?
Its just questions, I don't have good answers.

• Depression

Now there is lots of data on depression in cancer. Fortunately most of it is understandable and reactive to the diagnosis. It is so common that we oncologists have a hard time recognizing it. If we see it, it must be really bad. If you are looking for a QoL study to do, a randomized trial of the latest medication for depression at the time of cancer diagnosis is likely to be positive and helpful for patients.
No, I don't want to be the supervisor!

• Suicide

You would think that we might hear a lot of this, but we don't. It is an interesting phenomenon that I witnessed frequently in my grandmother, that no matter how much you complained about life and wanting to die, when someone/thing was actually threatening your life, you started fighting to keep it!