When You Really Need the Straight Scoop

There was an interesting story on CNN recently about the number of times that terminal patients were given “straight talk” by their doctors of the severity of their situation and end of life care options. The impetus for this story was a study led by Dana Farber Cancer Institute that followed 603 terminally ill cancer patients with life expectancies of less than a year. The conclusion: only about a third of the patients had a discussion with their doctor about their end of life care options.

Many speculate that doctors don’t want to “go there” with their patients for fear of driving them into a deep depression. But, this study revealed that those who were told about their prognosis were no more likely to be depressed than those who were not. In addition, those who’d had conversations with their doctors about what type of end of life care they wanted to receive were “three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated.” It appears that when patients know that the end is near, they make decisions about how to instruct family members or doctors about how to handle many of these issues.

The CNN commentary concludes that while many doctors are reluctant to discuss bad news with their patients, “this study shows that honesty is the best policy.”

So, is CNN saying that doctors who don’t have these discussions are dishonest? That seems like sort of a big leap to me. That statement implies that doctors are deliberately trying to mislead their patients and in the process doing things that are not in their best interest. But that seems quite contrary to why doctors enter the profession in the first place.

I would like to offer a couple of my own thoughts for what I would characterize as a reluctance to deliver this very difficult news to patients rather an effort to mislead them.

First, I believe that doctors simply are not really trained well to deal with these patient situations and discussions. Doctors spend years and years and years being taught how to heal people. They are trained not to fail so it is hard for them to acknowledge that they have in some sense failed their patient by being unable to offer them treatments needed to help them beat the disease.

Second, what also crossed my mind in reading this article is the timing of these discussions. In many ways, cancer has become a chronic disease and is being treated as such today. For example, Elizabeth Edwards has Stage IV breast cancer, but is being treated with medications that allow her to live her life with a high degree of quality even though her cancer will never be cured and will ultimately take her life. The conversations that I am sure that her doctors are having with her now are not about the “end” but rather how to prolong her life by taking advantage of treatments coming down the research pipeline. They obviously had the “straight talk” conversation with her about how her cancer will never be cured, but I would imagine also a lot of the “hope talk” that suggests that the game in chronic disease management is to move from treatment A to treatment B to treatment C in order to extend her life even further. Is it appropriate for Elizabeth Edwards and her doctor to have end of life discussions now when she is doing well with her treatments now? And, if they don’t, does that mean her doctors are being dishonest with her?

Third, I also think that doctors sometimes take their cues from their patients. Some patients simply don’t want to hear that there is nothing more that can be done for them, as much as others think that they may need to hear it. Terminating active treatment is a huge decision for doctors and patients and one that both lie awake at night struggling to make. The breast cancer patients that I have known in terminal situations knew it, but did not want doctors to talk to them about the end until they were ready to raise it themselves. They felt that they had fought for many years to live and having that discussion meant that they were giving up. They were not emotionally ready to deal with it. My own experience is that many patients know when it is right to have those conversations and are often coached by their doctors and guided by other professionals who can help these patients deal with that difficult passage.

This article concluded by saying that The California State Assembly is proposing a bill requiring doctors to tell the truth – as if doctors are engaged in some sort of evil, heinous behavior today that is keeping patients from getting the best care possible. This seems wrong-headed to me. I don’t know about you, but I don’t want a law that dictates what kind of conversations I have with my doctor about my health and my future and when we have those. And, who pray tell, monitors and decides what is “honest?” Try not to laugh when you think of having the government step into that role.

Let’s instead give our doctors – and ourselves – the training we need to have those difficult conversations at a time that is appropriate to have them. Let’s put our energies and our monies in having psycho-social specialists part of the doctor/patient team to help everyone thru this difficult time. And, please, let’s not paint the doctors as the evil empire here. They want to save us from this insidious disease – and they have. They are our allies. And more important, they are human beings who feel the pain when one of their patients loses the battle that they have dedicated their lives to try to help them win.

What do you think?

http://www.cnn.com/2008/HEALTH/conditions/06/15/cancer.talk.ap/index.html?iref=newssearch