A Nurse’s Distress Over a Dying Patient

Oncology nurse Theresa Brown is a regular contributor to Well. Today she writes about a family’s reluctance to accept the inevitable death of a loved one.

The patient being transferred to me had metastatic cancer. I was told she had a large tumor in her hip, buttock and abdomen, but that description did not prepare me for what I saw when the patient got to my floor. 

Her “large tumor” was so grotesque it is difficult to describe. She had visible growths resembling giant warts extending in a solid mass from her backside, around one hip, and covering one side of her belly from her navel to her groin. There were blackened, necrotic (dead) areas scattered throughout and other sections festered, oozed and bled. The smell was horrific.

Four of us moved her from the stretcher to the bed and, in the process, realized she was lying in layers of sheets soaked with her own secretions and bodily fluids. It was impossible to clean her up without causing her significant pain since her skin was so fragile. She was only in her early 40s, but she didn’t know where she was or what was happening. Although she had been prescribed oral pain medications, rolling and cleaning her still was physically agonizing for her.

The patient was “D.N.R./D.N.I.” — that means “do not resuscitate, do not intubate” in the case of heart failure. But she was still getting treatment because the relative who held her power of attorney said the patient could have antibiotics and blood products. An earlier scan of her chest and abdomen had shown widespread metastatic disease in her lungs and tumor growth in her groin that pressed on a main artery. She had intractable anemia that transfusions relieved but would not cure.

From my point of view she was dying, and after three of us got her rolled and changed and cleaned up, I left the room so angry I was shaking. Suffering can be part of healing, and nurses bear witness to constant suffering in the hospital, but this patient’s suffering seemed pointless and cruel. 

Nurses are supposed to be the patient’s advocate, and this situation compelled me to speak up. I called the doctor and expressed my deep misgivings with the plan of care. I thought the patient should be “C.M.O.,” or “comfort measures only,” meaning we would stop doing tests on her, stop giving her antibiotics, and start giving her enough intravenous narcotics that she wouldn’t have to live in pain. The doctor heard me out and then explained that, just the week before, the patient had been mentally intact and had insisted on continuing treatment.

Family members showed up soon after I had this conversation. I’m still a pretty new nurse, but something about this patient motivated me to bring up the issue of comfort measures with the family.

“So there’s no hope for her?” they asked, with tears in their eyes.

“We just want her to get better,” said one of her sisters.

I explained her condition to them, and then the doctor came and we all talked together. These were caring family members trying to do the right thing for someone they loved. The phrase that came up repeatedly was, “She’s not ready.” The family wanted the patient to be at peace with the decision to withdraw treatment. They, and the doctor, hoped that an infection had caused her mental status changes, and that once the infection cleared the patient would address future treatment questions herself.

I found myself telling them, “You know, sometimes people can’t be peaceful with that decision, ever, not even at the very end, and it’s heartbreaking for the families.”

Later, after the family left, the doctor and I talked again. From her point of view, and I’ve heard other medical people express this idea, physicians have an ethical obligation to address problems that can possibly be reversed, even when the patient is near death. If the patient had an infection, it could be treated with antibiotics. The patient’s anemia was also potentially treatable if the cause could be discovered.

Everyone involved had the best, even noble, motives, but nobility may be misplaced in a situation like this. The question on my mind was misery.

With her incontinence and already vulnerable skin, the patient was at risk for recurrent infections that would further debilitate her and increase her physical discomfort. As her disease grew in her lungs, her respiratory status would become more and more compromised until she was gasping for air. This patient, who was visibly suffering, who had very little real hope of living for too much longer, also was receiving very expensive health care.

The doctor was honest and empathic, the family sympathetic — there were no bad guys here. But this tableau offers a snapshot of some of the most pressing ethical issues plaguing American health care. Should patients receive expensive treatments with little hope of efficacy just because they ask for them? Should we fix problems that can be treated when those problems probably occurred because of an irreversible progression of a patient’s disease? What does it mean to be “ready” to die?

When Jan, her nurse, told me the patient finally was going home on hospice I got tears of relief in my eyes.

Americans have a hard time facing death, but we need to do better. “Do not go gentle into that good night,” Dylan Thomas wrote. The truth is, nobody needs to be told. Very few people meet death easily, and no one wants to die. But when someone’s body is wasting from disease and there is no hope, we need to bring more than good intentions to the table.