The Unforgettable Death of My Forgotten Patient

The Unforgettable Death of My Forgotten Patient

Ms. M had no family, no way to communicate, no hope of survival—and had left no directive about treatment.

By 

BRITTANY A. BETTENDORF

Aug. 21, 2015 6:46 p.m. ET

 

Ms. M was not the patient I thought I would reminisce about for months after she had passed away, but her difficult death clung to me. She was miserable, mean, fetid and foulmouthed. She clawed at my hands as I tried to place my stethoscope on her chest and spat in my face as I bowed my head to listen to her heart. In between vivid hallucinations and violent outbursts, she cursed and told me I knew nothing.

Tormented by pain, Ms. M died alone, except for the doctors and nurses who had found their way into her life by chance after others had long ago pulled away and left her forgotten. Shortly after arriving at the hospital from her state-run nursing home, she was deemed “non-decisional,” meaning two physicians agreed that she lacked the capacity to understand and communicate information needed to make medical treatment decisions.

ENLARGE

PHOTO: GETTY IMAGES

Ms. M had a large intra-abdominal mass; so large it was easily palpated despite an exam severely limited by her violent attempts to assault the examiner. While the mass was probably far too advanced for a meaningful intervention, it was impossible to determine further options without a biopsy and more imaging. The problem was, Ms. M was incapable of consenting to any invasive procedures. I called her nursing home; she had no known family or friends. It was time to initiate the long, cumbersome process of obtaining legal guardianship.

“It could take months,” the social worker told us, clearly unhappy with the patient’s new label of non-decisional. Depending on how fast the mass was growing, it was unlikely Ms. M would survive the wait time to obtain a guardian. But without a guardian’s consent, we couldn’t perform a biopsy. She was admitted two more times that month for complications likely related to the mass.

When I entered her room on the morning of her third admission, she did something unexpected. She didn’t curse or spit at me as I approached her. Instead, she lay still. Her chest rose and fell calmly but shallowly, her face ashen, no longer reddened with rage. She was dying.

Overnight, she worsened and was transferred to intensive care. With the hope that the pneumonia that weakened her lungs could be reversed, we inserted a breathing tube and started her on more antibiotics. But after days of no improvement, it was clear she wouldn’t recover. Ultimately, the breathing tube was withdrawn on the basis of medical futility. Ms. M died quietly, an affront to her tumultuous nature.

As physicians, we invoke medical futility when it becomes clear that despite our most advanced science, our finest technology, and our best intentions, death is inevitable. Often this is invoked when a patient or family desires medical interventions that we know will have no effect, or a negative effect, on the outcome. But in the case of a patient who is non-decisional, with no family to speak for him or her, it is invoked when further interventions will only lead to further suffering.

Would Ms. M’s outcome have been different if she was decisional and a biopsy could have been done months earlier? If she had a voice to describe her pain? If she had a loving family member to advocate for her and insist upon immediate biopsy and removal of the mass or to enroll her in hospice to prevent her from undergoing multiple fruitless invasive procedures? If she had a legal guardian who had no attachment to her whatsoever other than the duty to advocate for her best interest? Or might this chorus of voices still fail to articulate her wishes?

Ms. M’s sad story illustrates how entirely preoccupied we become with circumventing death. Often, as physicians, we stop interventions only when the patient or family firmly and conclusively says “it is time.” And it is then that we step back to discover this for ourselves.

For those patients who are non-decisional, who have no voice of their own—and, like Ms. M, no one to speak for them—it is the most difficult. We are directionless, without a compass, often continuing to treat the patient even if it means more pain and more suffering because we “don’t know what the patient would have wanted.” Additionally, we flatter ourselves: “Maybe, just maybe, I can save this patient.”

For the voiceless, even guardianship is often not the answer. Family members given the responsibility of health-care power of attorney often feel guilty about “letting Mom die” or “giving up on Dad.” The best deaths I have seen—and yes, it is possible to die better, more comfortably and with more dignity—were of patients who had a voice at the end of their lives because they could instruct us when it was time to let them die.

Physicians need to listen to and empower the voices who speak for our voiceless patients; we need to educate guardians and families about pain and suffering or how invasive a particular procedure is and realistically discuss the chances of success. Patients need to understand the challenges of dying in our health-care system, so they will be motivated to voice their wishes to friends and family, or to commit them to paper while there is still time.

Hospitals need to promote documentation of a health-care power of attorney for every patient, and perhaps even generate automated reminders in the electronic medical records of those patients who carry diagnoses, such as early dementia, that could later render them voiceless.

And finally, as a society, we need to change the culture of dying, so that death is something we anticipate and plan for, much like a birth. We need not fear the inevitable. If we can do this, over time and with compassion, we will ensure that no one will die, as did my Ms. M, voiceless in America.

Dr. Bettendorf is an internal medicine and pediatrics physician in Milwaukee.