Trust is the foundation of quality patient care at the end of life

“It’s those pain medicines you are giving her.  She’s very sensitive to them.  I think that’s why she’s confused — she is doped up.”

Two months after receiving her diagnosis Mrs. M signed up for hospice.  At our first visit, she was suffering and visibly uncomfortable.  Her skin appeared excoriated from weeks of scratching.  She was confused, restless, and racked by pain.

Mrs. M had metastatic liver cancer resulting from underlying cirrhosis.  Her scarred liver functioned at minimal capacity even before the cancer appeared and obliterated her remaining healthy liver cells.  Because of her preexisting liver disease, her oncologist was unable to offer curative chemotherapy.

In liver failure, confusion can signify the end.  Toxins usually broken down by the liver accumulate and effect the functioning of nerve cells in the brain. Often the confusion clears with treatment; however even in these patients 50 percent will die within one year.  The unfortunate patients who do not recover their faculties with treatment often die within a few days.

I started Mrs. M on medicines for itching, pain, and restlessness.  We initiated aggressive treatment for her confusion as well.  Her comfort increased dramatically, but her mental state did not clear.   She stopped eating and drinking.

I carefully outlined our options.  She was comfortable and most likely her time had grown short. We could decrease or stop her pain medicines and observe.  There was a small chance this would improve her confusion but at high risk of precipitating severe pain.

“I want to see what she’s like off the meds.”  Her daughter and health care surrogate requested we minimize any treatments that might be sedating, including pain medicines.  My hand felt leaden writing the orders to decrease her medicines; her nurse reviewed my orders with raised eyebrows.

Mrs. M’s pain grew worse.  She became unresponsive.  Her untreated pain caused her restlessness to return.  After a few days her family accepted the end was near.  They could not bear to see her suffer and requested I restart the pain medicines.

She passed away a few days later.

On the day Mrs. M died, her family somberly expressed gratitude.  Through sobs, her daughter thanked the team for her care.  She felt most thankful that we listened to her concerns about the comfort medicines.

“You listened to my concerns, and that meant everything.”

Ultimately, trust is the foundation of quality patient care at the end of life. The hospice team struggled with the decision to lower and stop comfort medicines. This is not what we would have requested for our own loved ones.  Our team witnessed firsthand the suffering of Mrs. M and felt forced to stand idle, tools to alleviate her pain in hand.  Without trusting our team, however, Mrs. M’s family may have never accepted her inevitable decline.

The suffering of Mrs. M lasted days. The memories of mistrust, suspicion, and perceived poor care at the end of Mrs. M’s life would have haunted her family for a lifetime.

Brian J. Carlisle is a palliative care physician and can be reached on Twitter @brianjcarlisle.

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