“What kind of God would do this?” she sobs and rocks. I am sinking in my chair and the nurse is perched on the side table. To focus on something other than her palpable despair, I regard the worn sofa and imagine a public hospital meeting room with comfort and sunlight. When a daughter arrives, she squeezes in beside her grieving mother.
She is a woman plainly devoted to God and her children, especially the unmarried daughter who is now my patient. The second daughter strikes me as thoughtful and educated, and as becomes evident, helpless to stem the tide of her mother’s sorrow. I fret at this, not because I am rushed, rather the patient needs an urgent outcome.
Through vague notes and piecemeal exchanges, I have learned that the patient in her forties has advanced cancer and the time she has taken to consider her options may have irked her previous doctors. Her sister found this indecision uncharacteristic and thought that her refusal to commit to treatment was actually a desire to preserve quality of life in a dire situation. I merely listen, as it’s hard to have an opinion about a patient I’ve never met previously and who has said politely that she’d love to talk but her brain isn’t working so would I please just call her family.
This morning, she was too sleepy to talk. Gauging the ominous trajectory of her confusion, I tried to engage her on her thoughts about treatment.
“I guess I should have treatment but no, I said no before, didn’t I?”
“What’s bothering you now?”
“I’m very tired.”
To my staccato questions she gave staccato answers and, with each response, my heart sank a little further.
“How can I make you comfortable?”
“Who knows your wishes?”
Her situation deteriorates by the hour. Terminal confusion is distressing to watch and must be even more distressing to endure. Among professionals, there is uniform agreement that it is in her best interest to institute end-of-life care. It has been hard enough for us to watch her rapid decline, but how to broach a morphine infusion and terminal care with a mother who until recently was hoping that a new oncologist might breathe new life into a hopeless scenario? And how to even begin saying to a bewildered family, “You don’t know me, but you will need to trust me.”
Families hate being sprung with such surprises but, ultimately, they serve the patient. As I walk into the meeting, my apprehension rises. While the task does not (and should not) become routine, it’s decidedly harder when there is no pre-existing connection. An unfamiliar doctor delivering more bad news has an uphill battle compared with the one who has seen the patient through the ebbs and flows. At these times, it is particularly important for professionals to agree on important points and I am relieved to be supported by an experienced nurse.
Our goal is to convey that the patient is dying and it is kind to let go, but I have underestimated the enormity of our task. The mother is inconsolable. Leaning against her well daughter, she cries and cries at the terrible turn of things, but as her words become clearer, it dawns on me that she doesn’t understand that her daughter is dying and believes the temporary setback can be fixed.
The patient’s sister has a better idea (or acceptance) of the grim situation. Gently, she tries to bring the conversation on track. What should we do now? What will help her the most?
We realise she is very sick. But my answers return us to what could have been, refreshing a series of laments that are as legitimate as they are agonising because they only hold us back from a permission to palliate. While the patient’s needs are paramount, it is ideal to seek the family’s cooperation. Evidence shows that relatives who participate in making end of life decisions experience lower rates of complicated grief in the aftermath.
Then this, in halting tones:
“Doctor, tell me what you would do if this were your child.”
The question pierces me. What would I do? How would I act? Would I be an incomprehensible mess or a poised advocate? Would I plead my case or extinguish my remaining hope? As I consider the question, I think of all the years I spent rote-learning lists but never once imagining how to tackle this momentous question from a grieving parent.
Some doctors decline to answer such questions, saying their own view is irrelevant. Some hew close to the clinical facts; what they know best. Others venture an opinion without disclosing the personal beliefs that inform their opinion. Still others argue that to not answer at all is to abandon the patient because good medicine is so much more than a constellation of facts and figures. The best doctors approach this question like other onerous ones – with humility, empathy and a sense of duty.
Miserably, I think that as a parent I’d feel cheated out of time but as her doctor, I want my patient’s untimely but inevitable death to be peaceful, not least because any other memory will haunt her family. But it can be surprisingly hard to find the right words to articulate the storm within and I dread the thought of a misstep.
And then I hear the nurse say, “Let me tell you something I have never told anyone.”
My first, panicked instinct is that I left out some vital information but I don’t know what.
The nurse draws closer to the mother and gently reveals that not so long ago, his wife gave birth to a seriously ill baby. Deciding against futile intervention, the couple took their daughter home, where she survived longer than predicted.
“We gave her a name, cared for her, and when she died, I was holding her in my arms. I know what it’s like letting go of your own child.”
The room has frozen. In the pin-drop silence that ensues, I feel emptied of breath. The nurse holds the mother’s gaze and as suddenly as she had dissolved into tears at the sight of us, her eyes grow dry and her face turns resolute.
“We are going to step out for a while, but we are here when you’re ready,” he says softly.
My awe, gratitude and heartache mingle into one. To help grieving relatives reach a difficult decision without hectoring or judging is a fine art and I am moved to have watched as fine an example as I’ll ever see. Outside, I whisper how sorry I am that he had to relive his experience, but he describes it as an instinctive response to a parent’s sorrow.
We receive consent for formal end-of-life care and the patient dies peacefully within days.
The mother’s grief is helped by the consolation of a shared fate. Our own sorrow is helped by the fact that a fraught conversation led to a better death.
When so much of medicine is based on the illusion of control, it can be difficult to know how much to reveal of ourselves in front of our patients. But the best medicine doesn’t draw such arbitrary lines between the lives of providers and patients; it recognises that there is a place for our stories to enable the healing process.