I think of all the professions in the world, being an oncologist has got to be way up there on the list of stressful and emotionally challenging jobs. I think they even have it harder than open-heart surgeons or war doctors, because unlike them, oncologists can sometimes watch their patients die for a much longer time. Surgeons and war doctors may lose their patients on the operating table, but oncologists might see and interact with their patients for weeks, months, and years before the final separation, all the while getting to know their patients fairly intimately in the process of watching them die.
I’m not sure what they teach in medical school, but there must be a course on how to interact with patients. Maybe they even teach future doctors to keep a certain emotional distance, so as not to compromise their reason and decision-making abilities. But I don’t think they have to take the humanity out of the profession.
One of the most difficult parts of my experience with having cancer has been dealing with doctors, nurses, and other hospital staff, especially the first time around. Most of them just didn’t know how to talk to a cancer patient. I don’t think it’s necessarily because they’re heartless people just doing a job. Not at all. In fact, many of them turned out to be quite kind and thoughtful, after receiving feedback from me about how I felt. I think their problem was the same for most people in general, including me, pre-cancer – we just aren’t equipped with the skills to interact with and communicate with someone who we think has a serious illness or is dying.
I think it’s every patient’s responsibility to educate his doctors and caregivers because they’re the only ones who can really do it. Sure, I think there should be a course in med school about patient communication, but each doctor-patient relationship is unique.
As an example, what should a doctor say if the patient asks, “How long do I have to live?” I don’t think any doctor should answer that question because there is not a doctor in the world who CAN answer that. I’m a person who likes to plan and I know some doctors think they need to give their patients a timeline so that they can get their affairs in order and prepare themselves and their loved ones. And I encourage doctors to give the patients a warning about preparing to die before the crucial time comes. But there’s a better way, a more humane and most importantly, an ACCURATE way to answer the question.
Here’s my suggestion: “I can’t tell you how long you have to live; nobody can do that. Nobody can tell the future. I understand your need to know so that you can prepare yourself and your loved ones. If you insist on an answer, all I can tell you is the statistics that have been gathered from past patients. According to these statistics, people with your type of cancer with symptoms and progression of disease similar to yours live for about ___ more months/years. The first half or more of that time will be relatively pain-free and you will be able to go about your life as usual. But in the last ____ weeks, you may be in some considerable pain and may need to be in hospice care. Our goal will be to manage the pain as best we can. But that is still some time away and we can discuss how you want to deal with that part a bit later.
“But remember that I’m telling you this based on statistics. Statistics are numbers and data gathered from PAST patients. They don’t necessarily tell us about the future, or about what will happen with YOU. Every patient is unique. And every patient’s reactions to drugs, manifestation of symptoms, response to treatment are unique.
“Even diseases that are considered incurable now may be curable in the future. Chicken pox was once considered incurable. Now they have a vaccine that can prevent it from even happening – and that’s just been in the past few years. They even have a vaccine that can prevent cervical cancer – that was just last year.
“I’m not saying we’re going to find a cure for your cancer in the next six or twelve months. But I’m saying that there’s no guarantee that we WON’T, and that it’s not ridiculous to have hope. So I think we can prepare for the worst, but hope for the best.”
I think that’s a realistic, practical, and honest way to give the patient the information he wants, as well as the hope he needs.
My oncologist told me the first time around, “Even if there’s one percent chance of survival, YOU will be in that one percent!” She wasn’t just being a cheerleader or giving me unreasonable hope. There is absolutely no reason why I can’t be in that one percent. And there’s no reason why every patient can’t think the same about himself. A friend once told me, if we were talking about the lottery, a one percent chance would look pretty good. People buy lottery tickets for a one-in-a-million chance at winning. Now THAT’s hope!
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