Our fault

I am in a unique place, as a budding gastroenterologist. For one, I am a subspecialist. I am board certified (after several one or two day multiple choice examinations and 7 years of post college training) in internal medicine. Now, like many of my peers, I have chosen years 8-10, to learn in depth about one organ system. In my case, it is a love of all things digestive, or, as I joke with my friends: "everything from the mouth to the bum including the liver and the pancreas." One thing that I like particularly about my field is the fact that I can help people with many of their ailments. And when I cannot, I can either turn the patients over to doctors who can (for instance in the case of cancers, where oncologists or surgeons become part of the care team), or I can provide support in other ways (like sending my patient with intractable nausea to an acupuncturist last month- yes, it worked!) Sharing in care is one of the great joys of being a doctor. Each time I call or email a specialist in a different field I am astounded by what there is to learn, and eager to hear their perspective which is often grounded in how they see the body or have been trained to see. But last month, in sharing a patient with a particular cancer specialist, I learned a harrowing lesson about how medical doctors may be contributing to the problems I have alluded to in earlier posts with end-of-life care. Tonight I share this experience:

My patient is a sad story. At 17 she had her first of 3 children all by different men, two of whom are alcoholics who she kicked out of her home years ago. At 28 she lost her job and shortly thereafter got into a car accident and was on disability for years. At 39 she saw a physician for constipation who discovered that she had anemia as well and she underwent a colonoscopy and was found to have stage 4 colon cancer with metastases to her liver. So now, at 40 she has a 23 year old, a 19 year old and an 11 year old. She could not afford college for the older kids so they did not attend. She had trouble motivating them without a father figure in their lives. So this is hard: A 40 year old mother of 3 who will be dead in a year or two. As it turns out, her mother died of colon cancer in her 50s. She never told anyone that until it was too late.

It is here where the branch point begins. There are probably a thousand different paths we doctors could take at this stage. Here are 3 such paths:

1) There are new drugs out there, and protocols for drugs yet to be tested in the human body. The consent forms for enrollment into these studies are long and tedious due to the liability which needs to be carefully explained to the patient. Hours are spent on education and most of the education is in what can go awry. Complete understanding needs to be demonstrated by the patient (which requires a fair amount of intelligence that many lack) in order to enroll. Once enrolled, the patient needs to be compliant with the protocol, often involving stopping other medications, or eating certain foods. Protocols are strict about getting scheduled blood draws, showing up to doctor's appointments, returning screening phone calls. As one patient smartly put it once, "this miracle pill thing is a full time job." And the truth is, of all of the drugs out there in protocols, the vast majority will not cure the illness. In many cancers, a "success" is an additional 2 months of life. And at what cost? The side effects of these agents can be horrific. I watched a patient turn green and lose her hair in 3 days once on a new medication that was supposed to extend her life. On the flip side- think for a moment about that 11 year old. Isn't every moment with a mother a moment worth living? Before I had my daughter I might have flippantly judged a patient willing to sacrifice quality of life over days on Earth- now I have to think twice.

2) You are dying and I am going to help you have a wonderful death. Yes, I wrote "wonderful death." There is such a thing. We talk about good and bad deaths all of the time in the hospital but we don't always know what we're trying to say. Here's a good death: A 72 year old composer died last year in the ICU when I was rotating there with his 4 children and wife by his side and his favorite cello concerto playing on a CD player. He had not a single IV in his arm when he died. The room was quiet and they cried and laughed and spent 2 extra hours with him even after he passed. It was the most peaceful, beautiful death I've ever seen. And I felt honored to be a part of that. Now here's a bad death I witnessed: A 59 year old grandmother of 4 died slowly after months of inoperable gallbladder cancer and a total of 14 procedures including surgeries to relieve bowel obstructions. She died in an ICU over 11 days as the medical team pleaded with the family to reverse her code status should she go into respiratory of cardiac failure. 3 family members did not want her resuscitated but her official health care proxy was her eldest daughter who kept her code status as "full" and she then underwent 2 separate cardiac arrests requiring CPR and shocks in the final week of her life. After she died, the family members who wished for her to not receive the resuscitations did not speak to the daughter or the doctors out of anger.

3) You are going to die, but you can fight fight fight and I will fight with you. This is perhaps the most common scenario. The drugs that exist do delay death, and despite their side effects, patients often chose hair loss, nausea, weight loss over an early exit. In this case, the doctor is the mediator and the bulldog. This is often the oncologic stance.

In each scenario the doctor has a role- we are salesmen, biased by our own ethics and morals and religious beliefs and backgrounds and sometimes even by money (this one makes me sick). And in those moments of utter helplessness, patients turn to us as if we had divine insights- which we do not (although this scene from Malice is worth a much needed laugh right now! http://www.youtube.com/watch?v=LqeC3BPYTmE). At the end of the day, we bias our patients left and right, whether we admit it or not.

My unfortunate 40 year old patient was told, by her oncologist, "We can prolong your life." She was told, "We can give you time." The doctor that day never said "We can give you quality life and quality time." She bought it. She is now hairless, upset, in the hospital, and beginning to die a bad death. In the end this is her choice. But I am not at all convinced that she had the tools to begin with to understand her choices despite her clear thinking and ability to demonstrate some basic knowledge of her decision. Perhaps an ethics board should convene for each and every dying patient, early in their disease if possible, to discuss their options for them. These could be explained to the patient carefully and meticulously and a truly informed decision could be rendered. But this would cost money and time, neither of which is readily available in today's world.

At the end of the day, she will live a month or two longer in and out of the hospital than she would have staying at home, with her 11 year old by her side- a boy who had a chance to learn a vital lesson in what constitutes a good death- albeit at a much too early age.