Making Difficult Decisions
It is not quite noon on Tuesday, and I have already spent a lot of time this week thinking and talking with patients about making difficult medical decisions. The first instance was a phone call with a 50 year old woman whom I have not met. She has been recently diagnosed with a Stage I breast cancer, and her oncologist has strongly recommended that she take an endocrine therapy, one of the so-called AIs. She is very reluctant to do so, wants to focus on "healthy living", but could not identify specific concerns or fears. We talked at some length, and my role seemed to be to remind her that I am not a doctor, encourage her to speak more with her doctors, but to share some of my observations over the years (that can be summarized by cancer is a sneaky and unpredictable foe) and to reassure her that most women do fine with these medications.
The second conversation was with a very ill patient and her spouse in my office. They are both aware that her disease is progressing, and that any further treatments are not likely to bring much benefit. However, neither is quite ready to stop treatments and focus on quality of life/palliative care issues. This was a thoughtful, painful, loving conversation that brought us all to tears. My questions for them focused on their goals, what is most important, who and what do they most value, how can we help them reach those goals. Their eventual decision was to get a little more information about a possible clinical trial, but both were leaning towards declining that option. They understood that the side effects would be significant, and that the benefits were uncertain.
Finally, I just met with a woman who is completing treatment for ovarian cancer. Since her cancer is aggressive, she has been offered a clinical trial that is exploring the value of giving high risk women a new drug indefinitely once the standard chemotherapy is done. This is a double blind study, so neither she nor her doctor would know if she is getting the real thing or a placebo; they are both pills. Neither does anyone know if these pills will turn out to be helpful and extend the length of remission or whether they will just bring side effects and a lessened sense of well being to any period of health. She has not made a decision.
Some months ago, I wrote this article for Cancer Today about how to consider these questions:
Making Difficult Medical Decisions
In everyone’s cancer experience, there are times when tough choices must be made. It likely was easier in the era of Authoritarian Doctors when patients simply followed orders. Now good doctors involve their patients in decision-making, and that too often produces some degree of anxiety, uncertainty, and pressure along with a positive sense of involvement and empowerment.
Choices abound from the very beginning. Some, like choosing a doctor or a hospital, are about reputation, relationship, finances, and convenience. Others are about choosing between several suggested treatments. Still others relate to stopping treatment and deciding to focus on quality of life. Whatever the question, you likely will hear lots of advice from family and friends. This is especially hard if the advice conflicts with your own wishes or perspectives.
Whatever the situation and the problem, it may be to list positives and
negatives for each possibility; it may be helpful to do some research. Whether you want to immerse yourself in the medical literature or read very little is up to you. You can delegate this task or you can ask your doctor to explain the possibilities and stop there. Be careful of too much Internet research; stick with reliable sites, and stop if you start feeling anxious. For everyone, there is a moment of overload; remind yourself that you are not able to learn everything, and that it is not necessary to do so.
You almost always have time to take whatever time you need; ask your doctor what the timeline is for a decision. In the case of choosing a surgery (e.g. a mastectomy vs. a lumpectomy or robotic surgery vs. the traditional kind), it may be useful to speak to a few people who have been through it. Think about what will help you sleep well at night, not just tonight but two years from now. Different people have different priorities and worries, and identifying yours may make things more clear. For example, if you have small children, you may be most concerned about the recovery period and your ability to meet your responsibilities.
For many people, there are choices among several good treatments. This is made even more difficult by the reality that nothing in Cancer World is written in stone, and there are no promises. There may be clinical trials that are relevant to your situation, so the possibilities are even greater. It is easy to obsess about statistics, and worry that there is only one right choice. Remember that statistics describe the experiences of very large groups of people; no one knows what the outcome will be for any one person, and your doctor is only suggesting treatments that are known to be helpful in your situation.
Remember these things:
1. As the patient, you have the trump vote.
2. Pay attention to what your gut as well as your brain is telling you.
3. It is critical that you respect and feel comfortable with your doctor. If you don’t, find another doctor.
4. Identify the worst possible outcome of a set of options and do your best to avoid it. This strategy can help you focus.
5. Virtually none of these choices mean the difference between life and death. If they did, your doctor would be telling you what to do.