Palliative care in cervical cancer, part II | Lois Ramondetta, MD
The discussion of futility is not new to cervical cancer or to gynecologic oncology, but that doesn’t make it any easier. The goal, in a terminal setting, is always to extend life but not if it means compromising quality of life (QOL). Who is to say that one week more of life–in any condition–is not “quality” to someone else?
Ideally, quality would be improved with any treatment. I look forward to the day we can design clinical trial end points accordingly. For many of the women we treat with palliative intent, I struggle most with how honest we have been, and whether we have truly treated them in their best interests. Furthermore, I have asked myself what I would do in a similar setting, with such limited time, if I were that patient.
Many of our colleagues have casually responded that they would not get chemo in this setting, suggesting that instead they would go to a beautiful island to bask in the sun or to travel to an exotic land. I wonder if we give others that same opportunity. In other words, when the consent for the palliative chemotherapy is signed, were we sure to include, in our “presentation,” the percentage of time that no response is seen (not the percentage of time that a response is seen) and the option to do only supportive care because the outcome may not be any worse? Have we told our patients that now is the time to make amends with family and friends, or asked them if they want to travel anywhere (if the opportunity exists), or warned them that the time may come soon when they are unable to travel?
Finding the right balance is hard. Patients do not always welcome the “facts.” Satisfaction between patients and physicians may even diminish in a setting when incurable disease is emphasized. Recently, as an American Society of Clinical Oncology quality of care measure, we as providers were asked to ensure that our Electronic Medical Records (EMR) progress notes included a statement with the patient’s stage, goal of treatment, and expected prognosis with the obvious assumption that we have discussed this information with the patient. I’m curious if this new measure will cause us to have more practical conversations with patients, and if we as a society are moving towards this practical response to treatment decisions.
For many cervical cancer patients, the complexities of the health care system are intimately intertwined with issues related to resource allocation, appropriate screening tests, missed vaccinations, access to care and health literacy, school-based health education, out-of-pocket costs, and self-efficacy.
In my opinion, gynecologic oncologists have several ways to approach the conundrum of deciding what is best for patients with advanced or recurrent cancer.
- Incorporate a symptom assessment into every patient encounter and address or triage all clinically significant areas of distress. Refer all women with incurable disease to supportive care specialists early in the course of recurrence work up.
- Design tools that take end-of-life (EOL) decision making to the next (existential) level. Ask real questions. Not just Advanced Directive, Do Not Resuscitate and Power of Attorney questions, but something more along the line of the five wishes document approved in certain states.
- Remember that informed consent includes the option to forgo treatment and that our presentation of options often guides decisions for patients. In order to present non-biased information we must first be comfortable with our own choices. I often think this means having time to reflect on what our own life choices might be in these situations and to be comfortable with our answers and recognize our biases.
- Lead the way in designing clinical trials that take into account the improvement of symptoms as well as decreased size of the tumor, trials with dual end points, or trials valuing aspects of QOL as much as relative risk. For example, an end point aimed at decreasing the size of the tumor and reducing side effects.
- Recognize the important role we play in raising awareness of the importance of vaccinating all girls and boys before age 13 against HPV.
Deaths due to cervical cancer are so much more tragic because we have everything we need to eliminate this disease (in a perfect world), and we can no longer stand to see women die from a cancer that could have been prevented.