I am a physician. The hardest thing I’ve ever had to do was
to end my mother’s life.
My mother was diagnosed with breast cancer at the age of 47.
After a seven-year battle that involved multiple surgeries and countless rounds
of chemotherapy, she decided that she had fought long enough. She didn’t want
to suffer any more. Initially, I didn’t agree with her decision: she was still
young; her doctors were hopeful; and there were still some therapies that she
hadn’t tried. Over the course of many painful discussions, I became convinced that
she had thought through everything. It was her choice to die peacefully and at
home. She signed paperwork to this effect and entered home hospice care.
Unfortunately, as with many patients’ wishes, hers did not
get fulfilled. One day, her breathing became labored. My father panicked and brought
her to the local hospital. By the time I arrived, her blood pressure was
dangerously low and she was barely breathing on her own. The ICU doctors were
hovering, ready to put her on a breathing machine.
I could have never imagined how hard it was to ask everyone
to stop their efforts and let my mother die. There was paperwork clearly
documenting her wishes, yet the doctors and nurses asked me multiple times
whether I wanted to change my mind. My father and my sister both knew her
wishes too, yet they, too, were paralyzed by the thought of letting her go.
Since my mother’s death, I have been on the other side of
these discussions as the emergency physician talking to patients and their
families. I have learned that less than 30% of families have these discussions,
and as a result, many patients end up with life-prolonging measures that are
very likely to be against their wishes. As hard as it may seem to have such
end-of-life talks in advance, it is many times harder when the patient is in
extremis and the family is distraught.
Last week was the two-year anniversary of my mother’s death.
In her memory, I urge you to have a discussion with your family members now
about how they want to live, and to die. Make sure your doctor knows, and that you have paperwork documenting these wishes. That way, you will be able to honor
your loved one’s final wish, and you will know what to do when you are faced
with the most difficulty decision of your life.
11 comments:
I went through something similar in 2004. I thought I was a prepared. I'd spent a decade managing departments within a large hospital and 20 years more as a busy consultant helping healthcare organizations improve quality. My elderly, but very sharp father was extremely clear in his advance directives and had all paperwork properly prepared.
His wishes were not fulfilled. Despite my best efforts, I was blocked at every turn by greedy doctors at a for-profit hospital.
I am saddened to hear that things have not improved much for patients and their families in the last 8 years. However, as a longtime patient advocate, I advise people I care about to (1) Never go to the hospital alone, (2) Talk to Hospice early on - as they offer a wealth of information, expertise, and support, and (3) Understand that you DO NOT need a doctor's or a hospital's permission to call Hospice. Tragically, some won't suggest it, or create obstacles to Hospice because their revenue stream ends when a patient meets criteria and signs appropriate documents.
Thank you for writing your article. It's comforting that it was written by a physician and thankfully, there are many more ethical ones like you who are taking the lead and making a difference. Keep up the good work.
Thank you for reading and for your insightful comment. I am sorry for you, too, and for the difficult experience you and your family had.
Your advice about contacting hospice is excellent. It's so important for patients and their families to be informed, and to think about these issues before they are in extremis.
Thanks for your work. with best wishes,
Leana
Much of the debate on end of life choices comes from religious groups. As a Christian I used to be opposed to assisted suicide or people making the choice to not resuscitate. My opinion changed many years ago when we had to put our first dog down. We all acknowledge it’s not humane to let animals suffer but for some reason we don’t give humans the same dignity. Jesus came down hard on the Pharisees when they accused Him of sinning because He healed a man on the Sabbath. Jesus pointed out their hypocrisy because they’d pull an ox out of a ditch on the Sabbath but were unwilling to help a fellow human being. For me the question became; why are we so humane with animals when it comes to ending their pain but not so with people? Great article, thanks for sharing.
Brian, thanks for your comment. I have always wondered this myself, particularly as an emergency physician when I see patients come in who have suffered for so long and in so much torment. I'm religious too and believe that human life is sacred, but human suffering is something we as physicians need to alleviate.
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