“There’s nothing more we can do.”
These words are often spoken by a physician just before transitioning a patient to hospice and palliative care and are regrettably uttered only days, if not hours, before the person dies. These words leave no room for hope; they make a transition to comfort care a much-feared and often avoided final destination.
Yet here’s the reality: More can always be done. More important, patients know exactly the “more” that they want. The real question is: Why don’t we ask?
“If I had a magic wand, what is it you would wish for today?” This is a question I ask of my patients receiving hospice and palliative care.
No one has ever asked that I rid them of their disease. Rather, I have been met with immediate replies of “make my anxiety go away” or “let me travel to see my family” and “let me go home and sit in my garden.”
These are the things that people say, over and over again, when they are given the opportunity to answer. The real test for physicians, then, is being willing to meet the challenge of discovering our patient’s true wishes, the fulfillment of which may push us well outside our own professional comfort zone.
The Error in ‘There’s Nothing More We Can Do’
by Dawn M. Gross
http://opinionator.blogs.nytimes.com/2015/07/15/the-error-in-theres-nothing-more-we-can-do/
“There’s nothing more we can do.”
These words are often spoken by a physician just before transitioning a patient to hospice and palliative care and are regrettably uttered only days, if not hours, before the person dies. These words leave no room for hope; they make a transition to comfort care a much-feared and often avoided final destination.
Yet here’s the reality: More can always be done. More important, patients know exactly the “more” that they want. The real question is: Why don’t we ask?
“If I had a magic wand, what is it you would wish for today?” This is a question I ask of my patients receiving hospice and palliative care.
No one has ever asked that I rid them of their disease. Rather, I have been met with immediate replies of “make my anxiety go away” or “let me travel to see my family” and “let me go home and sit in my garden.”
These are the things that people say, over and over again, when they are given the opportunity to answer. The real test for physicians, then, is being willing to meet the challenge of discovering our patient’s true wishes, the fulfillment of which may push us well outside our own professional comfort zone.
Sometimes, it is actually the medical team’s best-intended professional wisdom that stands in the way of having patients’ wishes fulfilled. The patient who taught me that, whom I’ll call Ms. Weatherby, was a remarkable 57-year-old with a horrible collection of diseases, which had conspired to stop her lungs from working.
When I first met her she was already on a ventilator, a breathing machine in the intensive care unit, keeping her alive. The sedation required for such life support measures to be tolerable renders most people essentially unconscious. Not so for Ms. Weatherby. She was sitting upright in her bed, tubes entering and exiting nearly every orifice, yet she found ways to position her laptop and journals and myriad colorful pens so that she could be in constant communication with her extensive circle of family and friends.
She was keenly aware that she was not going to make it out of the hospital alive. But she was equally aware that her splintered family was not ready just yet to lose her.
“I want my family to know I am at peace,” she wrote on one of her note pads in response to my magic wand question.
Physicians mostly assume that life support is such an uncomfortable level of medical intervention that no one would ever choose it if they knew no chance for recovery existed and certain death in the hospital would be their only future. Ms. Weatherby challenged that, not in that she thought she would leave the hospital or even the I.C.U. — she knew she wouldn’t. But she defied everyone’s assumptions that life would be too unpleasant and painful in such a setting to be worth living at all. She radiated gratitude.
For several days, Ms. Weatherby had been complaining of increasing abdominal discomfort. She was receiving nutrition via a tube running from her nose into her stomach so had not been able to taste food in days. When I stopped in to see her she grabbed a pen and journal and wrote, “I vomited head to toe last night.” This has to be one of the worst events to happen to someone alert on a ventilator as you have no ability to activate your own gag reflex with a tube stuck down your throat. But she continued to write, undaunted, “My stomach feels much better.” She patted her stomach and kept writing. “After they gave me a bed bath, changed my sheets and clothes, I got to brush my teeth!” Just then she looked like the Cheshire cat showing off her pearly whites. It was the first time anyone had thought to try to let her do it since she had been intubated. “It feels so good. I am looking forward to doing it again tonight!” I said with a laugh, “Yeah, but this time without the vomiting, O.K.?”
Astonishingly, Ms. Weatherby was able to be taken off the ventilator only a couple of days later, placing her in a rare position to answer questions about her care.
“If your lungs weaken again, would you want the tube put back down your throat and be placed back on the breathing machine?” “If that’s what it takes to keep me alive, so be it. I am not ready to pull the plug yet if I don’t have to.” Knowing her as I did, I would have been shocked if she had given any other response. I quickly came to learn that other physicians did not hold that same perspective.
“I’m sorry? You’re telling me she wants to be re-intubated?” Ms. Weatherby’s attending physician exclaimed. “I’m not clear how this is palliative care? She’s never leaving the hospital.”
When advanced life support becomes comfort care, where do we draw the line? Based upon what I learned from Ms. Weatherby, I would argue that palliative care begins by removing the line.
When I returned to Ms. Weatherby’s bedside the following morning, she was re-intubated, alert and tapping away on her laptop. She immediately reached for a notebook and a magenta pen and, as if reading my mind, wrote, “I still want to live.” I said, “I know you do.”
I asked if I could do anything for her. She shrugged, then paused; placing her palms together she bowed her head. “Pray for you?” I whispered. She nodded. “I can do that.”
We both smiled. She straightened her gown and I noticed her bare feet bumping up against the edge of the I.C.U. bed, her flimsy blanket not able to reach so low and maintain modesty above.
“And how about some colorful cozy socks to match your glow?” She nodded emphatically with joy in her eyes. Simple pleasures and abundant gratitude … that was Ms. Weatherby’s way.
She continued to work relentlessly to bring her fractured family back together. Specifically, Ms. Weatherby wanted to ensure that her own death would unite and heal all those she so deeply loved.
Perhaps what makes medicine a frontier of endless discovery has less to do with the scientific advances pushing the envelope on our medical know-how and more to do with how our patients challenge what we believe we know. A week later, Ms. Weatherby’s heart, lungs and kidneys stopped working. Much of her family had been able to travel to see her in person; others visited via Skype.
She died as she had lived, living each moment to the fullest, grateful for what she had been given. Perhaps the choice between continuing “curative” treatment with no hope of cure and reorienting care to fulfilling hopes of what makes life worth living is no more complex than simply asking people to make a wish.
For some, like my father, it may mean being surrounded by the comforting sounds of home like his cat’s purr, the whir of hummingbird wings outside the window and his wife’s snore as she sleeps by his side. And for others, it may mean being left on a ventilator so they can finish saying their goodbyes, knowing then that they may rest in peace.
The only time doctors are left with “nothing more we can do” is when we fail to ask.