How families maintain hope of improvement, regardless of logic and science

I’ve always thought that I’ve understood illness and mortality very matter-of-factly. You live your life, you’ll most likely end up with some medical conditions along the way, and ultimately everyone’s life will come to an end because the body is not designed to function indefinitely. And do I cry at every funeral I attend? Absolutely. I understand physiologically and pathologically why things happen, but also realize human relationships will always incite emotions regardless of logic. However, from the clinician point of view, I now realize that I’ve always worked with patients using medical facts and logic as the filters through which I made decisions.

During my internal medicine rotation, I saw a seventy-two-year-old patient who was admitted for anorexia and abdominal pain. After a cholecystectomy, the placement of a feeding tube, and more than a week into her admission, she came onto my preceptor’s service.  Upon interviewing her, she seemed somewhat depressed. Her speech was a little slow, but I figured the pain medications were partly to blame. She had no desire to eat and claimed abdominal discomfort as the cause. Her appetite had been decreased for months, and she had already had both an upper and lower endoscopy as part of this workup. She lived alone, but was blessed with an amazing support system as various local family members occupied her hospital room at all times.

After reporting to my preceptor, we returned to the room. Unknown to me, he had deduced from her chart and my interview a very likely diagnosis that neither I, nor any of the clinicians caring for her within the last week, had picked up on.

Preceptor: “If I gave you a dozen eggs, but four of them fell out of the carton, how many eggs   would you have?”

Patient: “Well, I would still have eggs to cook.”

Preceptor: “If you were driving a car, and you came to a four-way stop, what would you do?”

Patient: “I would stop. I wouldn’t want to hit anybody.”

Preceptor: “Would you do anything else?”

Patient: “No, I wouldn’t want to hit anybody.”

Preceptor: “Do you understand that you need to eat to stay alive?”

Patient: “Of course.”

Preceptor: “But you are refusing to eat.”

Patient: “I’m not hungry.”

Preceptor: “Do you want to die?”

Patient: “No, of course not.”

She had advanced dementia, advanced enough to limit her foundational instincts of eating to survive. She had consistently deflected so well as her dementia progressed that her family had not realized her descent. Now that advanced dementia was most likely the cause of her drawn-out workup for anorexia and abdominal pain, discharge was on the horizon. As the patient was still not eating on her own accord, the family had to decide if they wanted to continue to feed her through the feeding tube at home, or discontinue and have palliative measures provided.

The logical part of me understood that her condition would not improve, and continuing to feed her through the feeding tube at home would only prolong the inevitable. But the emotional side of me couldn’t imagine having to be responsible for making that decision for your loved one, especially knowing the definite consequences. Ultimately, the family chose to continue her feedings at home after discharge. While medically I thought that was not the optimal plan for the patient, I could empathize with the family’s decision of prolonging their mother’s feedings. I do believe they understood what the future held, but prolonging the tube feedings would allow them the time they needed to accept it.

Then our six-year-old dog got sick out of nowhere. After five days of inpatient care, a blood transfusion, a bone marrow biopsy, and more than seven thousand dollars in vet bills, he was diagnosed with pancytopenia of an unknown cause. And just like that, we were now the family having to decide whether to continue tube feedings or not. Well, initially we chose to continue them (or in his case, the immunosuppressant medications, the daily CBC’s, and the carrying all seventy pounds of him up and down from our third-floor condo to go to the bathroom). Was this the most logical choice? Perhaps not. I’m sure the family that decided to continue their mom’s tube feedings would think our decision was irrational. But our dog was our first baby, and we refused to give up on him until he let us know that he was ready to stop fighting.

We watched him deteriorate in a matter of days, and although it was the hardest day of our lives, we chose to do what was in his best interest, instead of holding on because we weren’t ready to lose him. I still understand illness and death. But I think these intimate experiences have opened my eyes to see how some patients and their families maintain hope of improvement, regardless of logic and science. They, like my husband and I, were always hoping to beat the odds given by medicine. I’m hoping these experiences, both of the patient and family battling dementia, and of my own dog’s illness, will aid me in providing guidance to future patients and families also having to decide when to fight, when to not, and to always remember to keep the patient’s best interest at the heart of medical decision-making.

Justine G. Bedolla is a medical student.

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