Small Data

She was only 60 pounds. Her weight when this started six months ago was 140 pounds. What nutrition she took in seemed to fuel the cancer and not her normal state of affairs. She was a skeletal vision of her former, lovely self. Her wig, which she asked for without fail, continually dropped down over her forehead thereby covering her eyes and her sight of her family; she had endured 4 rounds of a three-chemotherapy regimen. Her weight, and hair, dropped relentlessly during the pursued oncologic onslaught. The worst side effect had been the abdominal infection necessitating surgery. An oncologist suggested a “radio-ablation” of a metastatic cancer site in her liver as a possible solution to her poor appetite. (A daughter finally and thoughtfully said, “No, thanks”, despite the husband considering it). She was in no pain; she smiled at bad jokes, appropriately. The family was present in full, one daughter after another rising from seats surrounding the hospital bed in the living room to offer a sip of water, adjust the wig, or provide any comfort they could think of and muster at the slightest sign of perceived discomfort. It was beautiful. She would die soon; I guessed within the next two to three days. I am not a perfect prognosticator, but 40 years of oncology practice informed my assessment. Her husband, along with the daughters had cared for her the best they could. A nurse caregiver came two-times per day, as she was bedbound. She had not gotten out of the bed for nearly a week before the family assembled. In the middle of attending to the dying woman, we were surprised by a visit from a hospice nurse. The husband had called hospice. He did not ask his daughters; they did not ask him why he suddenly wanted that service, but I later found out that hospice had been suggested by her physician. The hospice nurse was nice. She surveyed the situation, professionally greeted family members and, then, she, the daughters and the husband went to another room. In the other room, the dying woman’s full medical history was taken and scribed in the hospice nurse’s mobile electronic record. The nurse asked of childhood illnesses, medical illness, surgeries, medications, and even asked for a recounting of other cancers being diagnosed in the family. nbsp;After taking a history, the hospice nurse came to the living room’s temporary hospital bedside and did an exam. The blood pressure, temperature, and pulse were recorded. She measured the dying woman’s arm and leg circumference, took a caliper reading of fat content, shined a light in the patient’s eyes and asked the dying woman to follow the light. Again, all this data was dutifully recorded. Several hours after the hospice nurse departed, the dying woman lapsed into a coma. For too many of the last hours of her conscious life, the family had been whisked away from her side for data collection. She would die two days later without hospice visiting again. Bit coin. Block chain. Big data. Big-data analytics. The, “Electronic Health Record”. I kept running these words over in my head as I sat befuddled by the hospice visit. I hope you feel the same as I do about this story. It is a dualism. nbsp;On one hand, a story of empathy, compassion, and respect when the small data person is being considered. The family cared for her in a way I can only pray will happen to me. On the other hand, it is a story of institutionalized insanity, big data garbage, and the ignoring of the small, meaningful data that is prolific in the loving care given to individuals. Medical care will not advance via the form of care provided by the hospice nurse, in this situation. It will not advance via the collection of irrelevant data on utilization of care. It will only advance when we realize that what we should hold dear is our interactions, not our encounters. I do not mean to pick on hospice, as this service often provides kind support to dying patients, even though, in my view, they abdicated their responsibility to this patient. I mean to pick on the present goals and structure of the medical care system. It is lost in masses of meaningless data and processes, void of information and compassion. We should not forget that the best way to advance medical care for individuals is during the course of the small data connections that we call, caring. nbsp;nbsp;nbsp;nbsp;nbsp;nbsp;nbsp;