< Back to front page Text size – +
Yet another heart-rending story of a patient our health system failed appeared in yesterday's G section of the Boston Globe. Dr. Kiran Gupta recounts the utterly-avoidable suffering inflicted on an elderly chronically-ill woman, who "knew that her lung disease was slowly killing her" and "hoped to spend her final days at home, comfortable and at peace, rather than in a hospital hooked up to a machine."
But what happened?
Mrs. M. found herself at home, unable to breathe. Her husband call 911 and she was rushed by ambulance to the emergency room. As her shortness of breath worsened, all she could say was "help me." The medical team immediately jumped into action ordering blood work and a chest X-ray, placing an IV line and administering antibiotics. Eventually, anesthesia was called to insert a breathing tube and Mrs. M. was placed on a ventilator...
I don't know whether to cry, or to scream.
Mrs. M. even "had spent the last few months under the care of a hospice nurse with whom she had developed a close relationship":
On several occasions, she explained to this nurse that she had no desire to be place on a ventilator again, as she had been so many times in the past. The next time her lung disease worsened, she wanted medicines so that she would not feel the awful sensation of 'air hunger' that accompanied her severe shortness of breath...
Dr. Gupta explains this tragedy as happening because Mrs. M. "had never broached this difficult subject with her husband. He was unaware that she never wanted a breathing tube or ventilator, or to be readmitted to the hospital." Ultimately, "Mrs. M.'s hospice nurse was able to help her husband understand his wife's wishes. Mrs. M. was disconnected from the ventilator shortly thereafter and given medicines to ease her breathing. She passed peacefully."
I deeply sympathize with Mrs. M., including about how hard she found it to let her husband know what she wanted.
I deeply sympathize with Mrs. M.'s husband, who in a crisis at home did what almost anyone of us would have done, given what he knew (and didn't know).
I also fully appreciate that there were likely details about what happened, including things the hospice nurse or others may have tried to do, that didn't come through in Dr. Gupta's story.
But from Dr. Gupta wrote, I find myself angry at the professionals responsible for Mrs. M.'s care, and how they/we failed her and her husband.
As health care professionals responsible for the care of human beings in the last phase of illness, it is our job to make sure that the people who may have to make crisis decisions for a patient have the information they need. It is our job to make sure that a patient's wishes are known by everyone who needs to know, so that they can be respected. It was the job of the hospice nurse to prepare Mrs. M. and her husband for the utterly-predictable time when she would be short of breath at home, and her husband would need to know what to do. If the hospital to which Mrs. M. was brought after the 911 call was one she had been at before, it was the hospital's job to have immediately-available reliable information about how she wanted to be cared for, and then to respect her wishes.
Massachusetts is in the process of joining many other states around the country in implementing systems that help ensure this happens properly, including through an initiative called "MOLST" -- Medical Orders for Life-Sustaining Treatment. If Mrs. M. had completed a MOLST form, and if it were available when the EMT's arrived, she would presumably never have been transferred to the hospital, receiving whatever medication for comfort was necessary to allow her to stay home as she preferred.
But what Mrs. M. needed most wasn't a piece of paper, though that can help. She needed the professionals involved in her care to take responsibility for making sure that her wishes were reliably understood, that they were promptly available to any predictable decision-makers, and that they would be respected.
From what Dr. Gupta describes, they didn't do that for her.
One day, failure to do that will be considered malpractice.
Additional note: The one piece of this story that surprises me, a piece that I suspect may not be complete, is the apparent failure of the hospice nurse to try to ensure that Mrs. M's husband understood her wishes. In my experience, hospice nurses usually do this superbly. Some spouses nonetheless, in a crisis, can't help calling 911. But even when they do, the presence of a MOLST form in the house, or adequate and promptly-available documentation of Mrs. M's wishes in the medical record at the hospital, would have made a difference.
The author is solely responsible for the content.
About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
Learn why and how to start discussing end-of-life wishes with your family. Join The Conversation Project.