I grip my mother’s wrist gently in my hand and think back to the beginning of medical school when they showed us how to cuff the patient’s wrist ‘just so’ to palpate its pulse. However, this time I can’t feel anything beneath the edematous tissue of her extremities.
Mom’s cancer diagnosis in 2013 was a shock to all our family. She was young and healthy, and had paid special attention to her health after a diabetes diagnosis years previously. After 2 surgeries, 6 cycles of chemo and 35 straight days of radiation later, she was considered cancer-free. We were happy, we were weary, we were relieved. Finally, perhaps life can go back to some concept of normal.
I look at the spot on her chest where the radiation oncologist had a ‘freckle’ tattooed to serve as an external reference point for providing the radiation; it had gown fainter, but it is still visible. Her hair is thin but hasn’t greyed much despite the stress of hearing “you may only have a few months to live” just over four years ago. Her skin and sclera are deeply jaundiced. She is emaciated, save for the ascites and ballooning legs.
After we found out mom’s cancer had returned in 2017, the feel was all different. It was terminal, widely disseminated, and we were happy to just have each day. I remember how tired she would get, although whether the cancer or the treatment was the culprit I’ll never know. The pain she experienced each day was worse toward the end. It was like pulling teeth to have her take the lowest dose of oxycodone the doctor had prescribed to keep her comfortable; I guess she was concerned about reliance or constipation or other side effects. The fusion of life-extending chemotherapy and symptom-abating pharmaceuticals was a difficult balance to strike for all of us.
She stares into the distance, at nothing in particular. Her breathing isn’t laboured, but it isn’t easy either. I feel helpless watching her, GCS 3, as the vibrant woman I once knew can’t communicate whether she’s in pain, uncomfortable, frustrated, at peace, or simply bored.
I stroke the side of her face gently. She has been breathing, mouth agape, and unresponsive for the past 17 hours. I feel like she’s already dead now. I kiss her softly on the forehead and breathe in the smell of her hair. It smells the same way it has smelled for all of my 30 years. Like baby powder.
Her skin is cool and clammy. The sclera around her irises has hemorrhages. In all the pathophysiology we’ve covered in my past two years at medical school, I don’t remember a lecture slide with this stuff on it. None of us have “done this” before and there’s no attending physician around with the right answer. I try to imagine what mom’s feeling based on her disease, but it’s fruitless. How can I help her?
The oncologist told her she was jaundiced because the metastases had grown in her liver. The suggestion was that, since there was nothing further they could do for her, we should contact the palliative care team to see that she has the best end of life that she could.
When I heard about the news, I knew this was it. UpToDate didn’t have an exact prognosis for fulminant liver failure from metastatic invasion but I figured it couldn’t be long. I kept that to myself. I had no basis to needlessly fear-monger, so what was I to do?
Just as the palliative care nurse had shown me, I connect a pre-drawn syringe of hydromorphone to mom’s peripheral IV and slowly inject it. I go slowly because hours ago, when she was still responsive, she seemed uncomfortable when it was injected quickly. None of us know if this is helping or hurting, she just continues to breathe in and out rhythmically, staring across the room with that vacant stare.
A few hours later, after we take our final bites of food, someone notices her breathing has grown shallower. We gather around her and a strange quiet fills the room. I position myself on my knees at her feet, with her propped up in her chair. I grasp her swollen hand and right knee.
In – and – out she breathes. Slow. Shallow.
Her carotid pulse dances lightly on her neck.
In – – and – – out she breathes. Slower. More shallow.
Her carotid gently relaxes into the still silence of her neck.
In – – – and – – – out…
We’ll never know what she experienced at the end. Our tears, our grief were inconsequential. Were the drugs helpful? Did she suffer at the end? Did she know we were with her?
These questions aren’t ones that keep me up at night. During the preceding days, the palliative team reassured us, even with tears in their own eyes, that we were doing everything right. Everything to maximize her comfort and peace. That they wouldn’t have done anything differently.
And that now, brings us comfort and peace.
And so as I watched mom breathe her last breaths, it was clearer to me than anything has been clear: the essence of palliative medicine, or perhaps good medicine in general, is to simply be with. Being present with patients, with their families. Helping people be with their loved ones at the end.
No deus ex machina – rather just a sharing in grief and reassurance that they don’t have to suffer alone.