The family of a young woman with a brainstem glioma has been haranguing her physician to continue bevacizumab treatment despite a significant decline in her functional status. How to respond?
Paul R. Helft, MD
I have been caring for a 24-year-old woman who has had a brainstem glioma for the past 2-plus years. She has been through many treatments and has had a very difficult and complicated course through all of it. She recently had a decline in her mental and functional status, although her MRIs have been difficult to interpret. At her last office appointment, she was in a wheelchair, could not hold her head up, and was barely responsive to stimulation. One of her parents is a lawyer and the other works in the medical field. Her sister is a nurse. They are all deeply involved in her care and have been insisting that I continue treatment with bevacizumab (Avastin). I had originally suggested that she undergo several months of bevacizumab treatment, but after the first month, this significant clinical decline occurred. I have told the family that there is no further treatment to offer for the cancer and that hospice care would be appropriate. They have been calling me multiple times a day, emailing me long arguments about how the patient is no worse, and telling me that they want treatment to continue. They have accused me of giving up on her. When they come to the office, they put a game console in front of the patient to demonstrate how she is still able to function, but I see almost no purposeful interaction with the world remaining. Am I obligated to provide this therapy against my better judgment?
Many of the main features of the tragic situation outlined in this case are common; however, they present some of the greatest challenges in caring for advanced cancer patients: exhaustion of the active anti-cancer tools available for treatment, a family that clings to hope that treatment will continue to offer benefit despite evidence to the contrary, and undertones of legal risk if treatment is withheld and an (inevitable) bad outcome occurs.
In order to comment on this case systematically, I would like to summarize the main ethical tensions and questions underlying it. The first of these is the question of what the limitations are of our obligations to provide anti-cancer therapy for which we feel the risks outweigh the benefits. The second question concerns the legal risks involved in refusing to provide such nonbeneficial treatment. The third is how to manage the boundary issues raised by this family’s demands for constant communication.
Almost universally, decisions about medical treatments are a matter of weighing potential risks against potential benefits. Although it is now common in the US medical environment for patients and families to “demand” treatments, our profoundest ethical obligation is to weigh the risks and benefits and decide (preferably with patients and families) whether a given treatment is medically appropriate for a given situation in light of those risks and benefits. In this sense, we are under no ethical obligations to provide medical treatments just because patients request them when the risks so obviously outweigh the benefits. The one exception to this is cardiopulmonary resuscitation(CPR), which, at least in hospital and clinical settings, we are obliged by standards of practice and to some extent by regulation and policy to provide to patients who suffer cardiopulmonary arrest while in our institutions. In the absence of a “do-not-resuscitate” order, we generally must begin CPR, and so patients and families can demand that it be performed. But essentially all other medical treatments are subject to our professional judgment regarding whether they are worth providing or not. This case certainly lines up with these general principles: you are under no ethical obligation to provide bevacizumab treatment to this patient. You are obligated not to abandon the patient, ie, obliged to continue to treat the patient and provide palliative care during the course of her end-of-life care (unless the patient’s family decides they do not any longer wish you to do so). But there is no ethical obligation to provide further disease-directed therapy if it is against your better judgment as a physician.
As for the legal risk, as I am frequently reminded by hospital attorneys, anyone can sue anyone. With the caveat that I am not a lawyer, I think there would be no way of guaranteeing that this patient’s family would not sue after the fact. I believe that the odds that they would do so are low, and the odds that they would go to court now to try to force you to provide the treatment are very low. I suspect that the odds that a judge would agree to use the court’s power in this way would be very low as well. So the decision regarding cessation of treatment is left up to medical judgment. The case law that I am familiar with in which courts have been asked to decide whether medical treatments must be given in life or death situations have mixed outcomes. This case merits a conversation with your hospital attorney, the risk management department, or both.
Finally, as to the question of setting boundaries with this family, I commend your willingness to remain in close contact with them during the course of the patient’s illness and to provide so many means of potential communication in an effort to be available to them. Ethically, it is perfectly appropriate to set some boundaries regarding the extent, frequency, and length of communications, particularly when family members are repeatedly going over the same issues. It is best under such circumstances to make very clear-perhaps even putting it in writing-what types of communication, length of communication, and frequency are permissible. Scheduling weekly appointments and outlining the boundaries for those interactions might also be a good strategy.
One final note: this family appears truly to have denial around their daughter’s/sister’s condition. This is notable because, although we frequently ascribe denial to patients and families on account of the things that they sometimes say, I find that true denial-such as is described here, with the family apparently committed to the idea that the patient is not worse despite all evidence to the contrary-is relatively rare. Many of the things patients and families say that suggest they are in denial are actually statements they make out loud for other purposes (called illocutionary acts) and are not representative of true denial.
Disclaimer: The advice offered in this ethical consultation feature is based solely on the information supplied by readers, and is offered without benefit of a detailed patient history or physical or laboratory findings. The information is offered as a discussion of ethical issues and is not intended to be medical or legal advice and, therefore, should not be considered complete or used in place of a formal ethics consultation or in place of seeking advice from your ethics committee, legal counsel, or other available resources. One should never disregard or change medical advice or delay in providing it because of something that is printed here. The opinions expressed here are only those of the author and do not reflect the viewpoint of Cancer Network.