small points of light

I had just turned 18 when I took my first job in a residential health care facility…or as we still often call it, a nursing home. I was hired as a certified nursing assistant by a recruiter who came to my high school, and I started my training the day after my graduation. I learned the details of providing personal hygiene and grooming, quality of care standards, the meaning of the abbreviations commonly used in nursing care, and how to dress in white (which we were required to do) without allowing one’s brightly colored undergarments to show through. This was an important life lesson.

What stands out most in my memory, though, was the demonstration of each physical restraint device used to tether the aging residents to their beds, wheelchairs, or dining room chairs. I sat, horrified, as I learned the difference between a waist restraint, a pelvic restraint, and a chest restraint and how tightly each should be applied. I learned about padded wrist restraints and how they were applied to bed rails, and mitt restraints that kept people from scratching or pulling at feeding tubes. I thought to myself, I hope I never have to use these. To my horror, when I arrived for my first work day on the unit, everyone on my assignment had some physical restraint device listed on his or her care plan. I told myself, as I had been taught, they were for the patients’ own good, to keep them from falling or hurting themselves.

It was only a few days into my job when one of my residents grabbed my hand and begged me not to put a restraint on her. The little exchange that transpired involved me explaining it was on her plan of care, to keep her from falling and breaking her hip. I told her I would be in trouble if I didn’t follow her care plan. I remember her saying, “I know, honey…and I don’t want you to lose your job, because you are very nice. Just put it on me loose, ok?” I went home that night and cried. I had so little power. And those I cared for had seemingly no power at all. And so it went, day after day and night after night. I cared for my residents, but I never felt good about those restraints. And, as you might recall from a prior blog post, I didn’t last long in this particular job role in spite of its unlikely inspiration for my future career choice.

The next health care facility I worked for was very progressive, and had decided to be a leader in becoming “restraint free” even though this forward step in quality of life wasn’t yet required in health department regulations. This dignity-first approach upset some staff members who had been so indoctrinated in the culture of “restraints are for safety” that their worries conjured up images of older adults splayed all over the floor with various fractures. It was not an easy process to remove physical restraints from an institutional environment where this had become the norm, but everyone at the facility eventually bought in to the concept from leadership on down, so change began to happen. I learned how change happened, and what it was like to work together to push beyond the status quo. My job in this organization, as an activities assistant, was to provide lots and lots of scheduled and free activities to keep wandering residents occupied, instead of tied to their chairs. We experimented with different cushions and chair types that would deter the unstable from wandering without becoming too confining. We built safe walking paths, and worked with physical and occupational therapists to build more safety through independence. We started regularly thinking about the “least restrictive environment” to balance quality of care and quality of life. I was working on my social work degree at this time, so these concerns of promoting dignity and quality of life became increasingly important to me.

But, the restraint issue was not over in my career.

Several years later, now a full blown social work professional who had made her professional home in progressive health care facilities, I decided to take on a new challenge. I was inspired by a pay raise, in addition to my drive to promote quality of life. I took a position as consultant within a group of for-profit residential health care facilities with a shady reputation and many health department violations in their history. My job was to focus on social service and quality of life concerns. I was all of 25 years old. I had power in this position to hire and fire and write people up. But I wasn’t planning to use that unless truly needed.

For the first few months, I managed to build relationships and garner support for reducing both physical restraints and the use of psychopharmacology to sedate the residents of the facility. I tried to use what power I had fairly. I had some fabulous partners in this, including allies in pharmacy, nursing, and rehabilitation. I did not have supportive relationships with all my facility administrators, though. And I had no power other than persuasion with them, so that is what I tried. In some facilities, we began partnering together for positive change. In other facilities, it didn’t go so well. In particular, one administrator and I went head-to-head regularly about the use of physical restraints in her facility. I was young and fired up. She was seasoned and relentlessly set in her ways. My scheduled Mondays at her facility started making me feel nauseous beginning on Sunday afternoons because I knew the level of conflict that would inevitably emerge.

One Monday, I was talking with a resident of the facility who informed me she had been tied into her wheelchair all weekend. She was not fabricating from anything I could tell, and she was telling me a tearful story of her confinement. This was the straw that broke the camel’s back for me, and I knew in my gut that this time, I wasn’t going home crying over injustice. Something was going to change, or I was going down trying. I went to her medical record and saw where it had been confirmed in the charting that she was restrained to her wheelchair after trying to stand up on her own, although there was no medical order or indication for use of a restraint for a medical reason. I photocopied her record (which, as predicted, would later disappear). I spoke to the nursing supervisor who became incensed at me and told me staffing had been low, and she wasn’t going to risk a hip fracture just to make some do-good social worker happy. I spoke to the administrator who backed up her nursing staff. She tore up the disciplinary action forms I had written with the progress notes as proof. Then, she escorted me out of her facility and told me not to come back. So, instead, I went back to my main office, picked up the phone, and filed a formal report with the state health department. And then, I went to see my corporate boss to convey what I had done, knowing it was better to tell the story myself than to have it told about me.

What followed was unquestionably the most unpleasant time in my professional life. While I was not fired, I was reprimanded by my employers for going outside the corporate chain of command. Worst of all for me, I was unsuccessful in my attempt at a health department sanction, with the facility receiving a slap on the wrist warning after the facility owners advocated on their own behalf. Whistle blowing is not a glamorous activity. What did stop was the gnawing sense in my gut that things were not right. I also was free of my Sunday afternoon nausea. I became able to look at myself in the mirror every day of the week. I also found the inner strength to look for another job and settled, joyfully, into the next iteration of my professional journey as a Hospice social worker and bereavement counselor where preserving dignity was a central value shared by all my colleagues and administrators.

It is nearly twenty years since my whistle blowing adventure. I still have no regrets, in spite of the reality that it ended my career in long-term care management. In retrospect, I wasn’t acting alone. There were other advocates and other whistle-blowers exposing quality of care and quality of life violations, too. Change was happening on a policy level to improve care not because of the solo actions of any one person, but because of collective advocacy. The state health department now has regulations that prohibit unnecessary physical restraints and mandate the least restrictive environment in all residential health care facilities. The for-profit organization where I once worked has now gone out of business. Families and residents can demand better care, and there are public records of every residential health care facility’s policies, health department record and consumer complaints publicly available online. Most importantly, I hope that no aging resident ever again has to grab the arm of her young caregiver and beg for dignity and freedom. We, as a society, have finally restrained ourselves from exerting that power over our elders. This in itself is a small point of light.

But this story has a deeper lesson in it for me, for my colleagues and students, for all advocates of change. The collective values that guide our lives will compel us to act and speak in ways that do sometimes have an individual price. We won’t always get accolades, and we may even be told by family and friends and colleagues to just settle in and go with the status quo. If we choose to act on our convictions, we may have to give up something in the process. And, the values and issues we champion will define us, so we have to learn to choose our battles wisely. But, in the end, acting on our values…together…may bring us closer every step along the way to experiencing the kind of world in which we actually want to live.

[Written in response to Week 9 of the Who is My Neighbor blog series for St. Thomas Episcopal Church.]