My mother has been in hospice care for the past five months, after three months of almost daily visits with doctors and recurrent visits to the emergency room, and pointless hospital admissions fraught with tests designed to diagnose problems which would require surgeries that she could never survive.
It’s been a slow slide of over five years. Four years ago my parents decided to move from their home in North Carolina to live close to my youngest sister north of Atlanta. I visit home every few weeks now, so the trip from Boston is almost like a commute.
At first my trips were motivated by a desire to be sure that Mom was getting good care. I waited for hours in hospital rooms to speak to doctors who swished into and out of the room so fast that I could catch a buzzing fly with one hand more easily than engage one of them in a meaningful conversation. Phone calls to PCPs, cardiologists, pulmonologists, gastroenterologists, and rheumatologists were like talking to the wall. I bought a wheelchair. I ordered better scales and an automated blood pressure cuff that would email me her weight and blood pressure since I could not get the information in any other way.
I bought Mom an iPad that my Dad could use so that I could see her on “face time” when Skype got too complicated for them to manage. My siblings and I had frequent Skype conference calls as we tried to support my sister as she struggled to provide my parents with care. She was their sole source of transportation to doctor visits, and the only consistent local emotional support as my father struggled to let go and accept the inevitable. My Dad suffered as he saw my mother give up her computer, her books, and her will to live.
We are a family with financial resources and good health coverage, plus one doctor, two social workers, and three nurses, with a daughter living around the corner, yet we could not provide a safe and adequate environment for a frail 93-year-old woman and her relatively healthy 91-year-old husband. My mantra became, “How do other families do this?”
Over my own career I had seen thousands of people just like my parents in my office and in the hospital. I had made home visits and nursing home visits. I thought that I understood health care, and I thought that I was empathetic. I thought that I was making a difference with the thousands of prescriptions, tests, and procedures that I ordered. I usually returned calls and I tried to listen and then give quick and accurate answers to complex questions.
Despite my medical experience, I was pretty defeated as I sat by my mother’s bed on May 31st waiting for the hospice team to come. I was embarrassed to think of how little true relief I had probably provided to the many people I had seen over the years and how much misery I had probably introduced by perpetuating the concept that we might be able to find an answer that did not exist while ever justifying the quest in the name of hope.
The hospice team came. They took away most of Mom’s meds. They ordered a hospital bed and home oxygen. They asked my mother to sign some forms saying that she did not want to be resuscitated or come back to the hospital. They reassured both my Dad and my Mom that they could change their minds at any time. My Dad was pretty upset and frustrated. My Mom just wanted to get home.
The team that came into their home was different than the doctor and nurse who had discharged her. Things started slowly. There was a routine that had to be taught and new ways of thinking that had to be accepted. My mother’s chief caregiver is now Cindy, a seasoned visiting nurse with more than 30 years of experience taking care of the frail elderly. On her first visit she sat next to my mother’s bed with my father while I listened from across the room. Cindy spent more than an hour getting to know my mother and talking to them both about the new philosophy of their care. By the end of that first visit I was no longer my mother’s favorite doctor. I was just a son.
When problems have arisen at home, my parents call the hospice office and questions are answered or someone shows up in less than an hour. Mom’s progress is tracked in a case conference with her doctor, who is the medical director of the program. My dad is a minister and told them there was no need for my mother to have a visit from the chaplain, but when the chaplain arrived anyway, she engaged them both. My Dad softened up when he realized that the chaplain was from North Carolina and would connect with him with respect.
I spend more of my time on my visits now talking with my Dad because my mother sleeps for many hours every day. She needs help to get out of the bed and must be constantly attended. He has assigned himself a 24/7 job for the duration and it is hard for him to give up the responsibility of “taking care of my wife”. We both know that it won’t last forever, but that does not seem to make as much difference anymore. We all are better.
My siblings and I get together with my parents to reminisce about things that happened 50 or 60 years ago. Last Sunday my mother made it to the dining room with her walker, and we all sat around the table and enjoyed a meal together. I took a picture just in case it never ever happens again, but it was a high point that three months ago I thought could never be achieved. It shows how little I know.
Before last May, I thought I understood most of the nuance of the art of providing care. I was wrong. What I knew was intellectual. What I have learned recently and know now lies in the heart. I am a little ashamed of some of the disdain I felt at first toward the hospital that tried and failed. I am ashamed a little that I assumed that the hospice service would be flawed or inadequate in some important way. That was before I understood the transaction from the position of a grateful son. I now understand that really effective patient centered care is about improving the lives of families. Patient centeredness is the door to a very large new world that we need to explore a lot more. It may be low tech, but it is high touch and very, very efficacious. It feels good.
Gene Lindsey, M.D., 67, a cardiologist and primary care physician, is President and CEO of Atrius Health, an alliance of six nonprofit medical groups in Massachusetts. This post is adapted from one of Gene’s weekly emails to the practice.