The story of The Three Bears is ingrained in all of us from childhood. The little girl discovers the house in the forest and finds three chairs, three bowls of porridge and three beds. One is always too big and one is always too small (or in the case of the porridge too hot or too cold) and one is just right. It often feels that way in health care as we try to find the right answer. Health economists and policy people will say the problem is overuse – too much health care. Patients often feel as though more can be done that is not being done – too little health care. Finding the health care that is “just right” seems to be an insurmountable task both for populations and for individuals.
Two recent articles, one in a medical journal and one in the popular press, both in narrative form, show us the challenge of defining quality – the just right of health care – and ensuring it occurs. In JAMA Internal Medicine, Dr. Jennifer DeVoe writes about the care her father was receiving when at age 77 his emphysema took a dramatic turn for the worse. He was admitted to the hospital where the doctors, following the correct evidence based protocols gave him oxygen, intravenous steroids and antibiotics They were about to perform a bronchoscopy in the Operating Room which was the correct procedure to diagnose the cause of this exacerbation although one carrying significant risk as he would need to be on a ventilator and getting him off the ventilator may prove to be impossible. She asked her father how he felt about the bronchoscopy considering the risk as well as the likelihood that he would not survive without it. When his daughter told him that he had a choice and did not have to have the procedure, he said, “Let’s go home. What d’ya say?” They were about to do too much even though the correct protocol said it was the right thing to do.
They then transferred him to the in-hospital hospice program as he was too unstable to go home. Again, his daughter who is a physician managed to help him navigate the shoals of a hospice team that wanted to stop his intravenous fluids as that is the correct protocol to follow when someone is on hospice care. That was too little for this man who still had some goals to achieve. To get it just right, his daughter had to help him so the intravenous fluids would give him enough energy to send birthday cards to his brothers and call friends and family to say goodbye. By the end of the week he had died on his terms with his daughter’s help. He did not have too much care or too little care and he died receiving care that was just right.
The article from the New York Times, entitled, “A Doctor at His Daughter’s Hospital Bed,” recounts the story of a father, an experienced transplant surgeon, whose daughter is in the hospital critically ill. (Thank you to David Florman for sending this article to me.) He sees that her pulse is elevated and her blood oxygen level is decreased. The values had not yet reached thresholds which called for immediate treatment of shock although his experience told him that she was moving rapidly to a point at which therapy might not even help. This experienced surgeon and father knew that if he took no action he might lose his 17 year old daughter. Every protocol known to medicine holds that the treating doctor, not a family member who is there, should be making decisions such as whether or not to give fluids. However this father takes bags of fluids off an emergency cart circumventing the normal processes and probably saves his daughter’s life. He does all this with the nurse calling her supervisor to complain about this irrational family member acting against every hospital protocol. But his daughter was receiving care that was too little and he stepped in to make it just right.
I must admit, that as a father I have sometimes found myself in just that position of ensuring quality of care for a family member, often in ways that do not easily fit the protocols and the standards. I have been accused by hospital staff of not following protocol and have never been sorry about the actions I have taken for my sons when I found it necessary. (I have written about these situations in my blogs previously May 2013 and November 2014) I identified strongly with Dr. Bud Shaw as he protected his daughter from the norms of the medical system. Those norms can often be uncompromising and even uncaring when flexibility and care should be paramount.
Both of these stories reflect the difficulty of ensuring that every person receives care that is just right for them. It sometimes takes an understanding that protocols and guidelines are designed to be flexible and must be used in a customized way for each patient. In order to do that, the health care professional must be constantly thinking about how the protocols may and may not apply.
The unifying aspect of these stories is a commitment to the patient that is more than only a professional responsibility. The stories reflect a customization of care that requires knowing more about a patient, as Jennifer DeVoe puts it, and also caring more about the patient as a person and not only as a disease. They reflect a need for a family-like commitment to the patient. While I do not expect, nor advocate that a family member be the patient’s physician, I do advocate following the old medical saying that every patient should be treated as though they are a loved family member. Medicine of the highest quality must be a calling, not only a craft or a profession. We must find ways to measure and ensure that element of customized care and not depend on adherence to specific protocols as the arbiter of quality so that the care rendered is always “just right” for that unique individual in need.