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
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
Communication is Broken
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."
The Patient Suffers When No One is Talking
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.
Start the Discussion Much Sooner
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.
And Guess What?
As mentioned above, those cancer
patients who receive hospice services at an earlier stage actually live
longer than those receiving late-stage, active, chemo treatment.
With the palliative care offered
in the hospital, the patient's pain can be brought under control.
Families are united once more,
and can spend as much time as possible with the patient.
Family members won't have to
suffer over whether they made the right decisions on your behalf.
Patients can create farewell DVDs
of themselves that their children can watch at a later time. This way, the
DVDs won’t have to show the patient near death and looking like she's
on her last legs--that’s not the image you want to leave on a DVD for your
family to watch later.
Patients who prepare in this
manner have a better sense of peace and a sense of readiness about leaving
The patient's last wishes can be
honored, instead of her next of kin having to say, "I know she wanted
to see her sister on the East Coast, but now it's too late."
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.
Isn't This Just Common Sense for All of Us?
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.)
Don't Wait for Someone Else to Speak Up
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
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.