Abstract
Five months later I received a call from an outside oncology clinic requesting admission for Mrs. A. to our palliative care unit. She was described as failing to thrive. She was at home. I was told I had consulted on her in the past, but to be honest, I could not recall her. In clarifying her failure to thrive, the issues the nurse practitioner reported included altered mental status, pain, dehydration, inability to swallow medications, and being bedbound. I questioned if hospice or home care were involved and they were not. I called her husband and he reported he was concerned that his wife was failing and was in severe pain, as she had not been able to swallow her pain pills for the past 24 hours. We worked to initiate ambulance transportation for direct admission to our palliative care unit. In reviewing her clinic records, there were numerous discussions regarding reduced functional status, dehydration, and some slight confusion over the past month. She was now known to have brain metastases, which had been treated with radiation. Her recent labs, drawn in the past week, were within normal limits, and of note, a portacath had been recently placed to initiate a new chemotherapy regimen. Mrs. A. remained full resuscitation status by default, as no discussion of advance directives or goals of care were documented. However, the medical record clearly reported her disease was not curable and was advancing.
Within an hour of talking with Mr. A., he called back to inform me that his wife was becoming less responsive and her hands were cold. The transport ambulance would not be available for another hour. We discussed her disease and his understanding of her illness. He understood that she would likely die very soon of her cancer. He reported he was well aware that his wife's cancer could not be cured. They never discussed the role of intubation, CPR, or hospice for that matter. He said he knew his wife just wanted to avoid these subjects, as talking about them made her uncomfortable, and she did not want to die. I asked him what he thought would be the right thing to do, should his wife's breathing or heart stop due to this terrible illness. He reported that he could not imagine his wife dying on a ventilator or going through CPR. I told him that upon her arrival we would focus on ensuring his wife's comfort by not putting her through procedures that offered no benefit, and we would establish an advance directive. He agreed to this plan and then said that he hoped his wife would improve so that they might have some more time together.
Approximately 15 minutes later, Mr. A. called to inform me that his wife was no longer breathing. I rapidly reviewed with him what we had discussed—that his and his wife's wishes were that they would not want CPR initiated. I asked him to call 911 and inform the police and rescue squad what had happened and to relay his wishes. I called the county's rescue squad as well, informing them of the patient's condition and reiterating that her husband wished that CPR not be initiated.
Within five minutes Mr. A. called from their home pleading with me to tell the rescue personnel to not perform CPR. The rescue personnel repeatedly stated that as there was no durable DNR in place, they were obligated to initiate CPR. After extensive negotiating by Mrs. A.'s oncologist and myself, the emergency personnel deferred to Mr. A.'s wishes, and Mrs. A. was declared dead.
I called the home 30 minutes later and talked to Mr. A. He seemed shell-shocked, perhaps slightly relieved, but overwhelmed. He was sitting in his home alone with the body of his wife, whom he had loved for over 25 years. We talked for some time and he reminisced about their lives together.
I called several days later to check on him, only to get a voice mail, and so I left a message of support. He never called back. I asked our bereavement support group to follow up with him.
To this day I am haunted by the image of Mr. A. sitting in his home, alone with his dead wife, and by all of the reasons this event could not or should not have occurred. Should I have pushed discussions of advance directives when I met this lady months earlier? Why had her primary care physician, oncologist, nurse practitioner, and clinic staff, all of whom had seen her failing over these five months, not addressed the inevitable? Or did they do so but simply didn't document their efforts? How could the system have failed her so badly? Or was it that she evaded all attempts to discuss her prognosis?
It is not only Mrs. A who I have encountered having a “bad death,” but also Mrs. B. and Mr. C. Why has practice not changed since the SUPPORT study? Health care providers, especially those in cancer care, are still not talking with their patients about end of life and other tough discussions that follow. It is not only oncology providers but others—this lady could have had end stage heart disease, liver failure, or really any disease process. I suspect the same issues and outcome could have occurred. What if a policy (hospital or state) existed that mandated this be discussed? How could I change our system to ensure that the conversation was at least attempted?
I proposed to focus on the latter, working with our palliative care team to initiate medical record templates that include goals of care and whether discussions have been initiated on advance directives, medical power of attorney, POLST (Physician Orders for Life Sustaining Therapies), and hospice and if not, why.
We plan to make available advanced directive forms to all patients and their families seen within the oncology clinics. This will allow opportunities for patients to find more information regarding their illness and expected prognosis through educational and reliable Web resources. We will encourage all clinicians to ask of their patients with limited prognoses—“What do you expect to accomplish in the next month and next six months?”—so that all health team members gain insight into the patient's goals and perceptions.
Will this fix what happened to Mr. A.? No, but perhaps there won't be a Mr. B.