(This article was first published on KevinMD in 2018 and is used with permission. The author, Debbie Moore-Black, is an RN who has worked in the ICU for over 30 years. She created her blog to share nursing stories, offer ideas to improve care, discuss dilemmas facing patients and healthcare providers, provide a little humor, and offer opinions and insight on dying and dignity. Her stories are a composite of fiction and facts, based on the things she’s seen and experienced.)
It was a long December.
A few years ago, my husband of 37 years got his death sentence: recurrence of liver cancer with mets to his lungs and lymph nodes.
He had a “Whipple” — a surgical procedure for pancreatic cancer — on Dec 24, 2015, and the surgeon discovered liver cancer too. So it was a 16-hour surgery. We were told he might die on the table.
His eyes haunted me as I kissed him good luck for surgery. I didn’t know if this was our last moment together.
The surgery was successful, and chemo and radiation followed along with two heart attacks.
95 percent LAD and 90 percent circumflex the next year.
Each time I told him that he was having a heart attack, he would let me know that I was just causing trouble.
I never professed to be a cardiac nurse, but I knew my cardiology 101 quite well! But he maintained his arrogance and maybe his denial as he chomped away on his sublingual nitroglycerin like it was candy.
For the last six months before his new diagnosis of recurrence of liver cancer, he stayed in bed almost 80 percent of each day. There was excruciating pain in his abdomen. Narcotics would only help a little.
I instinctively knew his cancer was back, but nothing could prove it: The CAT scans were negative, MRIs were negative. But then, his liver function tests jumped up — he became extremely jaundiced.
A simple ultrasound — one of the least expensive and simpler scans — finally proved what I thought: recurrence of liver cancer.
Two drains under interventional radiology to his liver would follow. And finally, a stent placed to his liver.
He didn’t eat, and he lost over 25 pounds. The stent stayed in place, but the cancer grew larger as it spread frantically throughout his body. This left him in a skeletal state, jaundiced, barely able to talk or to walk.
And this man who was the best father to our three children, who loved his granddaughter and our daughter-in-law, who faithfully took care of his mother until her death, who was an advocate for the underprivileged, who was a leader in the under-privileged community, who worked diligently at the health department as an educator and producer and director of health films and co-founder of a health care film festival throughout the U.S and became a partner to assisting in establishing the same in England, who joyfully took our children’s friends into our house and treated them as if they were his own and took them on vacations of cruises and fun parks and beaches and volunteered with our church youth group teenagers in white water rafting events and seeing these young people off on a mission trip to Ireland to promote peace and love and encouraged education to the most underprivileged …
This man who I deemed as the last hippie on earth lay in a hospice bed restless receiving morphine and Ativan.
And I wish his suffering would end because this is not a life.
It’s been a harsh two years. Many miles of driving back and forth to many doctors: oncologists, psychiatrist, surgeon, interventional radiology, CT scans, MRIs, palliative pain MDs, healing hands, internal medicine — and I’d begged for a DNR. I’d beg for hospice. I was told I had no say so as long as my husband said he was waiting for a cure. He wanted everything done. And I frantically explained: “Your ribs will crack with CPR, your body is too fragile, you’ll end up on a ventilator and your wrists will be tied down and restrained, and then you will die anyway.” Nobody listened.
His surgeon told him “We’ll do palliative chemo, and it’ll wipe this cancer out that has come back to your liver and lymph nodes and lungs. You’ll live another three to five years.”
And his oncologist said, “We will do palliative chemotherapy, you can handle it.”
And they demanded that he ate well and take 20 meds twice a day and take insulin on his frail body that he refused to nourish.
It was those false promises I resent from the medical profession. I told the MDs what they promised was not true. Why are we doing this?
And I was shunned and disregarded. But I knew the truth.
And here he lies in a hospice bed waiting for death with a quickly deteriorating body and mind that doesn’t know our names or his name. And we scrambled to adjust and prepare … because the truth is only five percent of people with liver cancer diagnosis survive this deadly cancer within five years.
There are no miracles.
I beg the medical community to be honest and upright and stop the fairy tales and false assumptions that everything will be fine.
False promises lead to more heartache.
I’m asking for truth.
I just wanted truth.
My husband passed away peacefully at 2:20 p.m. on December, 11 2017.
He fought the good fight, and as always we all wished we had more time left.
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Debbie’s husband’s painful death occurred over five years ago. I wonder if those doctors who made false promises would do so today. I would like to think things have changed in five+ years, at least among the more recently-graduated MDs. Does anyone know? Is there a difference in blue states vs. red states? Bill
Thank you for sharing. Hopefully this will bring truth and honesty to those in possible denial.
Debbie, do you know the answer to Bill’s question? Are doctors still making false promises today?
Not all physicians are created equal. The majority of ICU physicians I worked with were very honest and sincere to fellow nurses, patients and family members. I feel my situation with my husband is I did not know the surgeon or the oncologist. Most surgeons and oncologists are honest, but these two unfortunately were not, which gave my husband false hope.
Medical Aid in Dying (MAID) should become a Federal law, but it only works if the Doctors are honest about the “6 months to live” requirement instead of greedily running up expensive procedures that will not alter the outcome.
Doctors who refer terminally ill patients to hospice care are systematically overoptimistic, according to a study by University of Chicago Medical school.
Physicians, on average, predicted that their dying patients would live 5.3 times longer than they actually did. In only 20 percent of cases were the doctors’ predictions accurate.
Thanks for this honest, heartbreaking account!! Maybe I’ll understand clinging to an impossible life when the time comes but from this perspective, at almost 90, I “hope” that I don’t torture myself and the people around me with a prolonged, tortuous death. I’d like it to be easier to die in this country and have been working toward that end for the last 40 years. But it’s too slow!! I know “hope” is not a plan and am grateful that there are organizations like FEN around, if I don’t hang on too long. Loved ones and carers should have a say in these decisions too!
Health professions aren’t good at predicting but patients seem tempted to keep asking them to do it. I know this. Coincidentally, my current primary who I’ve been with for maybe 4 or 5 years, often shrugs his shoulders. I THINK this is a good thing and yet, it makes me FEEL uncomfortable. I don’t push him for answers he doesn’t have but really, even in relation to minor symptoms, I want mom to know exactly what’s making me feel sick and exactly how to fix it.
MAID laws cater to our wish to have someone know. Referees and Umpires, whose calls are much easier, now have instant replay. I believe most physicians would be happy to be relieved of being asked to make that 6-month call on their own. Maybe, eventually, AI will be up to serving as reliable instant pre-play. Or, maybe we’ll wake up and change the MAID standard to something more liberal like, “unwanted suffering from a predictably terminal condition.” Fortunately, FEN is already that reasonable.