Events of the past three weeks have left me thinking once again about what we do as oncologists and the impact of our decisions on our patients and their families for better or worse.
The primary driver of these thoughts was something that happened in my own family. But the recent news about the boy in Minnesota with Hodgkin disease and his mother’s decision to forgo additional chemotherapy serves as a stark contrast to the circumstances that my own family has had to deal with around the very same question.
The person in question was my wife’s uncle. He lived in a rural part of Georgia, and was a farmer, an educator and a counselor. His greatest professional pride, however, was his work as a minister and evangelist. He was in the ministry for 60 years, travelling across this part of the country, preaching his gospel. He was indeed a man of faith, committed to his family, his community, his church and his religion.
Uncle Chester appeared to be a taciturn man, but his friends and colleagues were aware of an impish sense of humor that he apparently used often. I will remember him most for the beautiful service and eulogy he delivered just a couple of weeks ago when another member of our family (my wife’s grandfather) passed away in his early 90’s.
Shortly after that service, we got a phone call. Chester had cancer. What should he do?
These discussions are never easy under the best of circumstances (and there really are never any “best circumstances” when it comes to cancer). They are even more difficult when the person is someone you know personally, and is a member of the family.
The cancer probably started in the stomach. It had spread to the liver. Chester was rapidly losing weight. Earlier that week he had a CT scan which showed a mass in the stomach and tumors in the liver. An endoscopy was performed, and the diagnosis was a poorly differentiated aggressive stomach cancer.
When I asked the day of that conversation whether he would be able to preach the eulogy now, the answer was a definite “no.” He was pretty much bed-ridden, able to get out of bed from time to time with considerable assistance from his devoted (and wonderful) wife, but no, he could not preach the eulogy he had given just a couple of weeks before. He had just been diagnosed, but the cancer was exceptionally aggressive and he was failing rapidly.
What do you say in a situation like that? I talk and write a lot about cancer prevention, about finding cancer early, about new drugs and treatments and new ways of approaching cancer treatment. I talk and write about the progress we had made over the past 35 years, how far we have come, yet understanding we have far to go.
Yet here I was, with a respected and loved member of my own family, unable to offer anything meaningful. There was no treatment, there was no clinical trial, and there was no cancer center that had a miracle to offer. Surgery was out of the question, radiation therapy had nothing to offer, and chemotherapy had limited benefit and certainly couldn’t offer cure or a significant chance of remission.
Chester was, as noted, a man of faith. He believed in his Lord, he had worked a lifetime preparing for this moment. He clearly was not afraid. He knew his time had come.
In balance, I knew that chemotherapy would rob Chester of his dignity during his last days and may even hasten his end. He knew that too, and being able to have that conversation with his family, his friends and his colleagues was truly the mark of a man in comfort, and not in distress. He saw a local oncologist, who essentially confirmed what I had said. He and his family chose to enter the local hospice program, and two weeks later—this past Sunday—he passed on.
The funeral was yesterday, led by three ministers from the Church of God of Prophecy. They all spoke eloquently of their relationship with Chester, and what he meant to them, his parishioners and to his faith. The stories were sometimes actually funny, especially the one about him preaching from the rooftop of a house. He obviously touched many lives.
But one story stuck in my mind. It was from one of the ministers who is a leader in the church. He told of how he came to visit Chester, sat in the room with him, and talked. He told the story of how Chester was at peace with himself and his God, how he accepted his death after a life lived well. The minister marveled at Chester’s ability to sit in a chair and have that conversation, even when so near death.
The funeral was a celebration of life. Sadness was present, to be certain. But Chester wanted his family to wear brightly colored clothes, and that they did, since he knew this time would be a celebration of what he had accomplished with his life. He was a proud man.
And for him, the decision he made was the right one. Death came quickly, probably more quickly than even I anticipated. My family went to see him the week before, and although weak he was still able to talk. We could have recommended or encouraged chemotherapy, but it wouldn’t have been right. It wouldn’t have given him much time, and it certainly would have made his final days a lot more difficult than they were.
Chester Williams was a man of dignity who died with dignity.
Contrast Uncle Chester with the recent reports in the news about the young 13 year old boy with Hodgkin disease whose mother has decided to have him treated—according to those reports--with “natural healing methods” as opposed to chemotherapy.
Although it is always risky to comment about a medical case where you are not personally familiar with all the facts, what we do know that if this is indeed a stage II Hodgkin disease in a young person, then the chance of having a long term remission and even a clinical cure are substantial. This is one of the very first diseases where we had successful treatment with radiation and chemotherapy. Over the past several decades we have learned much about treating the disease, especially in young people. Success is never assured, but unlike Uncle Chester, this boy has a real chance of living a normal life once he concludes his treatment.
This is a situation I would have handled much differently from Uncle Chester’s. This is a boy at the beginning of his life, who may well have much to offer and much to accomplish. This is a boy who has an excellent (although not guaranteed) chance of success with his treatment. This is a boy who should be treated, in my personal opinion.
As I mentioned above, I have counseled many people over the course of my career. I understood a long time ago that living to see the sun rise and have a heart beat is not necessarily living, if one is in pain, can’t eat, is bed-ridden, and suffering. I know there are adults who make decisions that sometimes seem contrary to what we think are in their best interests. I know that many adult children of older parents can’t understand why their parents won’t take advantage of every opportunity no matter the cost or location to get the best treatment for their cancer.
But I also know this is a boy with hope, and in my opinion his parents don’t appear to be acting in his best interests. This is a situation that is the polar opposite of Uncle Chester’s.
Where Chester had little hope of recovering, this boy has much hope of a successful outcome. Where the side effects of chemotherapy would have been debilitating for Chester, the benefits were limited. For this boy, the side effects are serious and could likely be controlled, but the upside would be worth it.
When I talk about the progress we have made in the fight against cancer, I talk about the hundreds of thousands of people who have not died from their disease because of prevention, early detection and effective treatment. I talk about the immeasurable impact they have on all of us, the “leveraging” of their existence and the value they bring to themselves, their families and all of us through their lives, their accomplishments and their good works.
When I think of this young man, I wonder what future value he may bring to himself, his family and society if he wins his battle with his cancer. And I think what it must be like to stand in the way of that opportunity and encourage him not to pursue his life or his dreams.
So here we are: the older pastor who appropriately declined treatment and died with dignity, although much too quickly, and the young man with a life ahead of him that has now been made much more complicated and less certain by the course his mother has chosen. And I ask if anyone has the right to take away that opportunity, to take away that potential, to take away that dream.
There is an expression that I think about often: “He who saves one life is as if he saved an entire world. He who destroys one life is as if he destroyed an entire world.”
Uncle Chester saved many worlds. This boy’s mother, unfortunately, seems intent on destroying them.
I suspect most of us appreciate the former. I hope that most of us disdain the latter.