A Battle of Wills

Through our careers, we all accumulate memorable patients. This month’s post is dedicated to the memory of “Henrietta” (not her real name) who died recently and had an impact on my life. I would never claim to know all about her – we only met in the medical realm, after all, but I am grateful that I had a chance to get to know her at least a little bit over the past many months, and I wish we had had a chance to meet outside the hospital.

Henrietta was the one running the show over many long hospital stays. Nobody was going to steer her course on good or bad days. Discharge today – I don’t think so. Things aren’t looking good with this cancer – I’m not hearing any negativity today. A new medication for symptoms – no thanks.   I think I should call your family – no, not now.

Henrietta was the quintessential “difficult patient,” and it was not easy to be part of her care team. Trust had to be earned, and she did not let many people in. She caused no small amount of hand wringing, head shaking, and gnashing of teeth when her agenda and ours did not line up. And without a doubt, she knew how to work the system to her benefit, complete with last-minute changes of plan and new symptoms after discharge orders were written. She would pick and choose when she was willing to talk and with whom. If anyone infringed on her timing or agenda, she would refuse to talk or even turn away and ignore us. I was frustrated at the time, but I can smile now as I recall some of the ups and downs over the past months.

As physicians, we often charge into a patient’s room with our own set of priorities, immediately expecting them both to answer some of the most personal or painful questions with little or no build-up, and to reveal private parts of their body.  In what other area could we expect to come in as a stranger, ask someone if they are having any pain, are stooling out blood, have had any new sexual partners, have ever injected drugs, then view their entire naked body, tell them they have something that looks like a cancer, and end by asking them what they would want done if their heart were to stop or if they could not breathe without a tube stuck down their throat?  And all this can happen in less than half an hour!

Henrietta reminded me that being a physician by itself is not necessarily license to delve into personal or painful questions without permission. Bringing up an uncomfortable subject (even when necessary) could get us kicked out of her room. She was elegant when dismissing anyone who was not willing to approach her on her terms, and she even fired one or two of us. I am grateful that she allowed me to continue to be involved.

Despite the frustrations, Henrietta weathered cancer, and financial, social and family stressors with grace. She defied our predictions of decline. Her cancer stole her very ability to eat, causing her to vomit after nearly every bite or drink. Nobody but Henrietta can know how much pain she had. She had a history of taking care of many members of her family, and I cannot imagine how hard it must have been to go from caregiver to someone needing care. I imagine she was scared, frustrated, and possibly even angry at God, feeling let down by her very strong faith. She had limited outpatient care options that she trusted, leading her to spend more time in the hospital than was strictly “medically necessary.”

Most of all, I am thankful to have had the chance to see Henrietta at peace. I was gone for two weeks, and when I returned the end was clearly near. As death approached, the green emesis bag was gone, the furrowing of her brow was relaxed, and the tension had finally left her face. We had prepared ourselves for fireworks, but as we sat around her bedside the night before she died, it was a relief to see her family supporting her and holding her hand.

At that point Henrietta was too far gone to be conscious, but I like to think that she could hear us talking about her. I am sure she would have smiled and nodded as we told stories about her strength of character and strength of will – she had both in spades. I found myself strangely protective of her in the last days – her last night I wanted to tell some in her family to be quiet or give her more space. I didn’t think she would like us talking so loud around her, or stroking her head like that. At the very end, I am thankful that her death was a sigh and not a struggle.

Caring for a “difficult patient” can be a challenge, and I am grateful for being a part of her life and for her being part of mine. I am thankful for the reminder that simply being a doctor is not always enough to be allowed to enter into our patients’ lives and suffering. We always should strive to earn that trust that many place in us just by calling us “doctor.” It is an honor to join patients in their last days and care for them. It is easy to pigeonhole patients into categories. Like everyone, Henrietta was so much more than a coalescence of diagnoses, labs, images, and symptoms, but she really stood out for me. Her will to live on her own terms was a vivid reminder. In the end, I was glad that our agendas finally lined up, and even though we could not offer cure, we could offer her comfort and dignity.

I often use the metaphor of an incurable illness being like Sisyphus pushing the boulder up the hill. She worked so hard over so many hospitalizations. I like to picture Henrietta, having pushed the boulder up and over the crest of the hill, finally getting a chance to lie down at the top, taking a very well deserved rest.