The choice to do nothing.

This is the last of a series of reflections on a roundtable event the Colon Cancer Alliance hosted earlier this week, focusing on a multidisciplinary team approach to care. 

At the start of the day I reminded the participants that as we sit through meetings about medical strategies, treatments, data, scans, and all the new developments, as we discuss these things we should never forget who we work for—patients.  I challenged everyone in the room to think of one patient and keep them in mind during the course of the day, to view the discussions and dialogue through the lens of what would best benefit that person.

The patient I considered was in his late 60’s when he was diagnosed with Stage IV colon cancer.  He decided not to have any treatment. None at all.  No resection of the colon.  No chemotherapy.  No radiation.  Nothing.  He was afraid the drugs would make him sick.  Afraid the surgery would leave him with an ostomy.  Afraid the process of being a cancer patient would turn him into cog in a big medical machine that would strip him of his dignity, take away his choices, make him less of a person.

All of those fears are grounded in reality.  Unfortunately, though, a Stage IV diagnosis doesn’t leave you with a lot of good choices.  You can go through the process of treatment until it works, doesn’t work, or you decided to call it quits.  Or you can do nothing.  By doing nothing, the opportunity for dignity and control may be better in the short term, but is almost certainly worse in the long term.  After all, having emergency surgery done by the on-call cutter at the local hospital to address massive pain due to complete obstruction is not a good alternative to intentional, planned resection of the colon by a person whose expertise is precisely this kind of surgery.

But what if this patient could have been treated a different way?  What if the treatment group got together and developed a plan of action.  What if they then brought the patient in and had a real conversation.  The team could say, “This is what we want to do.”  The patient could say, “Here is why I don’t want you to do that.”  And together they could reach a solution that incorporates everyone’s wishes.

I feel I am not explaining this well.  I guess what I want to say is this.  I am excited about the possibilities of having many, many more patients benefit from a treatment group that truly works as a team.  But I worry about the people who will be left out.  The people who cannot or will not advocate for themselves.  The people who don’t have access to providers who are experts at their work.  I worry about the growing gap between people who benefit from the very best of care, and their neighbors whose care is left in the hands of a person who has failed to keep up with the rapid developments of the past few years.  And I worry about people who--like the patient I mentioned earlier--suffer from fears and misconceptions that paralyze them into inaction, when better communication and clearer information could put them on a path to a longer and better life.

I don’t mean to say that I know better what path this patient—or any patient—should follow.  I gave up on that kind of self-deification decades ago.  I remember thinking my grandmother was crazy to have a mastectomy when she was diagnosed with breast cancer in her late 80’s.  But she went through the surgery with flying colors and had several more good years before a stroke ultimately ended her life.  I couldn’t understand the decision of a friend to be treated at a local oncology center rather than travel to a premier oncology hospital.  But staying close to home allowed her more time with her children and ensured she was surrounded by her support network.  Maybe her choice wasn’t the best chance of getting the best treatment, but it was the best choice for her.

I do wish, though, that every patient had the opportunity to make truly informed decisions.  To have the luxury of someone sitting down with them and going through options and plans, benefits and risks, costs and opportunities. 

One of the things that impressed me most about the Colon Cancer Alliance when I was in the process of joining the organization was that we offer exactly this kind of “concierge” service.  Through our volunteers and staff, we can give patients a crash course in colorectal cancer.  And we impact more patients than anyone else in the country.  Still, it is not enough.  Too many people have no internet access, and so can’t peruse our web site or join our online community.  Too many people have no concept of self-advocacy and so never even consider calling our Help Line.  Too many people don’t live near the locations where our seminars and conferences are held, and so have no opportunity to access the information they could receive there.  We must find some other way of reaching out, some way to touch people who are most likely to be isolated, alone, and feeling powerless.

Maybe the decisions would be the same.  Maybe the patient I mentioned earlier would still choose to reject all treatment. But, with a good understanding of the possible future paths the decisions—at the very least—would be made out of hope, not despair.  And hope is a rare and wonderful thing.