I pose this weighty question twice a year, when I conduct my regular semi-annual retreats for patients with metastatic breast cancer. But I phrase it differently to these women; I ask them instead, "How will the decision of when to stop be made?
Their responses? The answer that most commonly echoes around the room is, "My oncologist will let me know when it's time to stop and switch to hospice care."
And what do the oncologists say when they're surveyed about how this decision is usually made? They answer that the patient will let them know when she wants to stop treatment.
In other words, no one is talking about this sensitive but incredibly important subject. No one is having the critically important discussion about palliative care, the goals of care, quality-of-life needs, and end-of-life plans.
And behind the buzzing of polite talk and good intensions, the oncologist is thinking, "I don't want to stop the treatment for fear she'll think I've given up on her," while the patient says, "I don't want to be the one to stop treatment--if the doctor still thinks I should be getting chemo, then she must still be hopeful."
And what are the real-world consequences of all this pussyfooting around? On average, when these patients with stage-IV breast cancer enter hospice, they are less than a week away from dying: This means that, on average, they receive hospice services for five days, or less. But hospice services are designed to be used for 6 months to 12 months. And, ironically, those who stop treatment and enroll in hospice care live longer than those who receive treatment up to the end of life. And believe me, this particular end-of-life experience, when the patient is receiving toxic chemotherapy drugs, lacks quality of life.
We need to fix this breakdown in communication. Patients, their families, and their doctors must start discussing these issues in a thoughtful manner much earlier than they do now. Too often, the "decision" about when to stop treatment is reached because the patient finally becomes too gravely ill to withstand one more dose of toxic drugs.
It's far better to have these discussions early on, so that a plan can be developed--all the while being optimistic for as long as that stance is realistic. Having all your ducks in a row can provide a measure of peace of mind for you and your family.
Make your wishes heard on how you want to approach treatment and, eventually, the end of life. It is hoped that patients with stage-IV breast cancer will live in harmony with their disease for quite a long time, in some cases years.
Even if you don't have a life-threatening illness, common sense dictates setting up some sort of an advance directive or living will, or assigning a power of attorney. (And while you're at it, it's also clever to document at this time who is to receive mom's wedding ring.)
In short, treatment for treatment's sake isn't usually what anyone wants. If you or a family member is facing a medical situation like this, don't wait for the oncologist to tell you when the right time to stop treatment is--your oncologist might never utter those words. Handle this yourself. Take charge and let your doctors know what your views are concerning quality of life for yourself.
Balancing the quality of life with the rigors of treatment is the key.
Please pass this information on--and know that, no matter whom you share this blog with, someone will benefit from it.