In the eyes of parents, children are always children, even when they are grown. So when our youngest son, 20 years old and a junior in college, needed sinus surgery, my wife and I drove the 7 hours to see him through the surgery and take care of him. That is what parents and families do. As a physician and as someone who routinely searches for best physicians and facilities as part of my job, I had investigated the surgeon and the facility and had decided that he should have his care in the city where he goes to school.
The surgeon was perfect. Caring, skilled and communicative. The facility and the health system was excellent. The surgery was less straightforward than we had hoped, as his obstructed sinus was profoundly infected with abscess formation. The skill of the surgeon and the operating team was a blessing as operating on infected tissue is always more difficult. Thus the one hour surgery turned out to take three hours. Our son came out of surgery and after a few hours in the recovery room and in the extended care area, we took him back to our hotel, as we thought we could better care for him post-operatively there than in his student apartment.
We walked him into the hotel, supporting him on either side. He was shaky on his feet as one would expect after hours of anesthesia. He had been intubated (had a breathing tube inserted into his trachea) during the surgery so his throat was sore and his voice very weak. No surprise there. In the hotel room, we were busy changing the dressing under his nose (a so-called “moustache” dressing) which was catching the bloody discharge from his nose, and also helping him deal with some difficulty with urination, also no surprise after anesthesia and surgery. We were helping him stay on top of his proper pain medication dosage and anti-nausea medication. We gave him the antibiotics he needed at the proper time intervals. And then it hit us. My wife and I are doctors. We are used to these issues and feel very well equipped to provide post op care and post op monitoring. But what if we had no background in medicine? What if we were accountants or store clerks, or engineers or bus drivers who suddenly had to be thrust into this role? Would we feel as confident and comfortable? What if the patient had no one to help them, with a friend driving them home and then leaving them alone for the rest of the evening, night and days to recover?
We were keeping him hydrated, pushing fluids. We were watching him to make sure the bloody discharge did not suddenly turn into bleeding that would be much more serious – even potentially life threatening. We suddenly understood emotionally the truth of the adage that people in our modern era were discharged from hospitals “quicker and sicker”. We intellectually knew that people, who had day surgery, were sent home from the hospital often in need of care, even if they were not in need of hospitalization. The norm today is for that care and monitoring to be provided by family and friends with little training and support in those often critical first 12 to 48 hours after surgery. Rarely do medical facilities, no matter how good, review the adequacy of that caregiver as they discharge the post-operative patient to home.
The facility where he had the surgery had done everything in a world class way. The instructions given to us upon discharge were thorough and clear. The surgeon had given us good explanations and instructions and had personally called our son the first day post operatively to check on how he was feeling. Everything was done the way it is supposed to be done. The problem from our prospective – from a family prospective – is the profound emphasis on efficiency by the rules of the payment systems and the minimizing of the human element of families caring for loved ones.
Thorough instructions do not take the place of experience and training. The care of someone with dressings, with pain management, and with all of the issues related to bodily functions are no longer seen as being efficient when done in the hospital. Those activities do not reach the level of care that meets criteria for skilled home care. But at the same time, patient and family fears and uncertainties are not taken into consideration. The risk of being alone is not addressed. Instead, the families are forced to take on roles for which they have no training and no skills. Patients are believed to have the ability to monitor themselves. It is believed that providing reassurance around wound drainage, expected post-operative pain, and family’s worries that the healing process may not be progressing as normal, is just not efficient.
My belief is that from a cost point of view, this responsibility given to patients and families leads to unnecessary ER visits and unnecessary readmissions as the caregivers often do not know how to deal with a loved one, having just gone under the knife, who complains of pain and other symptoms. Even though on paper, criteria may make sense, when they don’t take into account the experience, knowledge, and fears of the family caregivers or the lack of any caregivers, they are not adequate and can lead to poor clinical outcomes and ironically higher cost.
Our son is now doing fine, and I feel great gratitude and admiration for the surgeon and his team. On a broader scale, I worry about whether our push for efficiency in health care has actually hurt our quality of care and paradoxically increased costs. I worry that we may be minimizing the caring, understanding and empathy that are necessary components of health care. I worry that we may not be paying enough attention to the informal and untrained and unpaid caregivers who now must do so much of the monitoring and care. I worry that even as we improve the quality of care inside facilities; we ignore the fact that patients go home and are still sick and need care and monitoring. I hope and pray that we find ways to address my worries in an increasingly population based medical care system.