Balancing Chemotherapy and Quality of Life

This is a very important and controversial topic. There are lots of bad jokes about oncologists chasing a hearse, running to offer an additional treatment. There are other painful discussions about balancing quality and quantity of life, paying careful attention to the patient’s priorities and values and goals, and always providing honest information along with hope. One important thing that I have learned over all my years of practice is that none of us can know what we would choose unless we are in the situation. It is one thing to consider the question when we are well and quite another to be faced with a terrible decision when we are nearing the end of life. There is no single right answer. On the other hand, there are some wrong answers, and none of us want to make those mistakes.

We must be able to understand the realities of our situations, our illness, and our futures.

Several years ago, there was a study out of Massachusetts General Hospital that compared survival times of dying cancer patients who stopped chemotherapy and transitioned to hospice care vs. those who chose to continue with active treatment. The surprising result was that the people who had terminated chemotherapy often lived longer than those who chose to stay on treatment. It was also confirmed that, for most people, quality of life was better in the absence of chemotherapy.  It can be very difficult to tease apart physical symptoms and ailments that are side effects of chemo from problems being caused by cancer. Sometimes a thoughtful choice is made to continue treatment because it seems to be controlling pain or other cancer-caused issues. The equation is always comparing possible benefits to possible costs.

A recent European retrospective study considered the use of chemotherapy during the final month of life for women with metastatic breast cancer. Among the Greek group, 46.5% of patients had such treatment; in Sweden, the rate of 23.2% received chemo in their last month. A number of studies in the United States have found even higher numbers. Almost 80% of patients with some kind of advanced cancer were treated in their last month, or even week, of life. What is not discussed in these studies is quality of life. What is also not discussed is how these treatment decisions were made. Were the patients fully informed? What was the input from their families? What did their doctors recommend?

Over my many years of clinical experience, I often realized that patients did not know how ill they actually were. Whether this was because they had not been told or whether it was more related to what they heard is unclear. There have been studies to examine that question, and it is always very apparent that, even when the doctor thought she was being frank, the patient frequently left the meeting without understanding her dire situation. It is difficult and painful for doctors, who are trained to treat and cure, to give bad news. Doctors almost always have something else to try, something else they can offer, and acknowledging that the best offer might be doing less is a big mind shift. I have worked with many young oncologists around this concern and tried to give them strategies to understand their patients’ perspectives and thoughts. For example, it is helpful to conclude a “goals of care” conversation with a direction question: “What do you understand about your current situation?”

I suspect that every single person who has been diagnosed with cancer has thought about death. Some of us have, so far, been fortunate and able to stay well. Others have been forced to carefully consider and examine their beliefs and hopes. Even without cancer or another serious health problem, most people have thought at least a little about what would constitute a good death. If you have not already thought about this and had a conversation with your family, I strongly suggest that you look at the 5 Wishes Document. It gently takes you through all the most important questions and considerations and offers a way to consolidate and share your thoughts.

As must be clear, it is my opinion that receiving chemotherapy in the last weeks of life, under almost all circumstances, is unlikely to contribute towards quality of life and a “good death”. Again, I strongly support the right of each of us, in careful discussion with our doctors and our families, to make our own best decisions. There are a number of things which are generally thought to contribute to the likelihood of the best possible death and the best possible last weeks of life.

They include:

• A chance to think about and value one’s life and experiences.
• A chance to ask for and offer forgiveness to those whom we love. A very wise Jesuit priest and psychiatrist, Dr. Ned Cassem, said we ideally can say three things: Please forgive me for X. I forgive you for Y. And I have always loved you.
• Being able to spend the last weeks or days of life in the environment we choose. Almost all of us would rather be at home with hospice care than in a hospital.
• Being pain free.
• Concluding all necessary legal and financial planning and being reassured that all the necessary business has been done.
• Believing in something and/or having a spiritual connection. While not absolutely necessary, such a belief system will make these days a little easier.

Making the mental, emotional, and practical plans for a good death takes time. We rely on the honest information and best judgment of our doctors. We must be able to understand the realities of our situations, our illness, and our futures. Only then can we make choices about treatments and how to best use our limited time.