In Honor of Karen: The Road to Palliative Care

The first palliative care “consult” I ever did was on my friend’s mother.* The reason it’s in quotes is that it is generally considered unethical for physicians to treat family members and friends… and that I actually was not yet a physician.

My friend’s mother was diagnosed with glioblastoma multiforme – a terribly aggressive,  virtually incurable (commonly quoted rates of survival 5 years after diagnosis are in the range of 3-5%) type of brain tumor. Like many patients, the first tip-off that something was amiss was when she had a seizure. And by the time it was diagnosed, as happens in so many cases, the tumor was huge.

She forged ahead with treatment – surgery, chemotherapy, and radiation – but just before Mother’s Day weekend of 2011, my friend called to ask for his advice. His mom had been declining, spending fewer and fewer hours awake and needing assistance to eat even the tiniest bites of food, but now she wasn’t waking at all. And her family didn’t know what to do.

So we talked through the options.

They could call an ambulance and have her taken to the hospital (at this point, there had been no discussions about code status; in fact, she was still undergoing treatment); it seemed almost certain that this would lead to admission (likely to the ICU) and, depending on how things continued, potentially intubation with a breathing tube that would allow a ventilator to breathe for her if her body no longer could. But with her advanced illness, there were no guarantees she would every be able to come off of that support.

They could call hospice and try to set up care at home as quickly as possible, either in their home with nurses and aides visiting regularly or at an inpatient hospice facility if her family was unable to care for her at home.

They could call their priest to come and administer last rites, keeping her at home and calling for help only if they determined that it was needed.

And in the meantime, no matter what they chose, they could swab her lips with moistened sponges or cotton swabs, hold her hand, and talk to her.

My friend went back to discuss these options with the rest of his family. They ultimately decided that she would not want heroic measures and would prefer to be at home. They eventually got hospice care and kept vigil by the hospital bed that was set up in the living room. The last time she awoke, my friend asked her how she felt, and she replied, “strong.” A few days later, she passed peacefully with her family by her side.

I first learned what palliative care was when I did research in the field while pursuing my  master’s degree. Learning about it finally gave a name to the visceral urge that had driven me to pursue medicine: I never pretended that I would find a cure for cancer or some innovative therapy that would revolutionize modern medicine. What I generally felt was: people get sick and sometimes they die and it’s really difficult for them and for their families, and I think that I can take that journey with them. Talking my friend through caring for his mother in those last days confirmed the draw that I felt to this specialty. I couldn’t change what was going on in her body, but I could help her family make decisions about how to care for her and give them small but tangible ways to bring comfort to her and to them.

A few weeks ago, my husband and sons and I visited that same friend. He and his wife have a beautiful daughter. Both of his siblings have found life partners and are forging families of their own. I didn’t know his mother, Karen, in life, but what I know of her from his stories and from how he reminisces tell me that she was an incredible, loving person. I think she would be thrilled to see how her children have done. And I will be forever grateful to her and her family for allowing me to play one small part as her life drew to a close. That experience confirmed that this is the work that I feel called to do.

 

*Published with permission

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