The surgeon’s resident assistant was doing rounds on the weekend before my wife was expected to be discharged after a tumultuous recovery from throat surgery. I had been repeatedly asking about the schedule for her final procedure, a scope to assure healing had progressed well, and had been told that the OR had not yet been scheduled. On Sunday, when I asked the resident he said that the OR was fully booked on Monday, with emergency cases and others that had been scheduled for a long time. “We can’t privilege a convenience procedure over these other patients.”
Perhaps it was the length of time I had been at Mass General making sure my wife was getting the care she needed, but I reacted to this doctor’s use of the word “convenience.” I angrily pointed out that my wife’s procedure was not a convenience. It was critical to her being discharged to continue her recovery at home. I insisted that there was no longer any medical reason for her to be kept in the hospital and that she would only make progress in the comfort of her own home, with the attention of her caregivers and in the company of her beloved animal companions. I demanded that the surgeon be contacted to arrange for the procedure he had promised. I walked away before the resident could respond.
My intervention seems to have had the desired effect. The OR was suddenly available at 8:30 a.m. on Monday morning. There were some last-minute hiccups after the procedure, but she was finally discharged that afternoon. She had to have oxygen via a portable tank and nasal canula on the long ride back to western Massachusetts. And that didn’t matter. I was getting her home.
Ten days caring for a loved one during and after surgery is taxing. It is also instructive in the vital role of a dedicated family advocate in overseeing and, when necessary, challenging the decisions taken by physicians, nurses and hospital administrators. The engagement begins before a procedure and continues through a stay in an intensive care unit, the move to a regular room and, eventually, on to discharge. The work continues at home, but at least there the family member has greater control. I’m not talking about the challenges of handling the financial side of hospitalization — that’s better left to those with more knowledge — but only about the direct context of care.
This is not a responsibility for which most of us have been trained, unless you have experience in medical settings or have learned from previous episodes. It is too easy to relinquish control to the medical staff whose expertise can intimidate and render you silent even as you want to ask questions and perhaps insist on alternative approaches to treatment. But your loved one, assuming they are unable to speak for themselves, is depending on you to intervene on their behalf. Here are my hard-earned lessons for what I call fierce advocacy.
The most important starting point is the recognition that everything in a hospital is geared to rapid assessments and evolving treatment plans. The problem of under-staffing and onerous record keeping affects how much specific attention the individual patient receives. Even those nurses who entered their profession with a deep commitment to caregiving find themselves overloaded with multiple patients and endless time on the computer updating patient records. My experience at Massachusetts General Hospital in Boston, a premier medical facility that is far better equipped than local hospitals that operate on much smaller budgets, still revealed the impact of time and money on the care my wife received.
The second foundational point is that the process of securing permission for procedures and treatments is not designed to give either the patient or the person speaking for her/him the time to consider what’s about to happen. Signing forms is usually undertaken in the pre-operative unit or emergency room where the pressure to acquiesce is overwhelming, even if the recitation of potential bad outcomes is terrifying. We typically sign our names with blind faith in the good judgment of the medical staff that will be administering drugs and performing interventions. It is a legal myth that these forms actually represent informed consent.
The final point is that hospital rules are sometimes arbitrary and inimical to the ability of a family member to be an active participant in the course of treatment. I had to demand access when I arrived earlier than visiting hours or stayed later. I was once asked to return to the waiting room when my wife was having a new IV placed — I refused and waited just outside her room. I sometimes got resistance when I insisted on reviewing medications and treatments. I understand that medical staff have to be free to do their work and that a family member can get in the way. But if you are the legal representative for your loved one’s medical care, you have both the right and duty to be with them. You will find allies in the nursing staff if you make yourself helpful to reduce the care needs, like assisting with feeding and exercise, but in the end access and a role in decision making should not be denied.
It is not my intent to guilt trip those who are unable for any number of reasons to be with their loved one through their hospitalization. As a retiree with the financial resources required to spend 10 days in Boston, I was able to be with my wife through her entire stay at Mass General. Most others have to balance hospital visits with jobs and responsibilities at home. Still, even in abbreviated visits it is possible to ask for thorough updates and explanations. Asking questions and making sure intelligible answers are provided requires more determination than time. Your loved one deserves no less.
Donald Joralemon, emeritus professor at Smith College, lives in Conway.