I did not come to palliative care in the usual way. Most of my colleagues saw the need from an oncology or hospice perspective. I was just a primary care nurse practitioner working away, minding my own business, in an Internal Medicine Clinic. I loved the geriatric population and chronic illness. I educated and coached, cajoled and encouraged all my patients in an effort to empower them to manage their diseases. I would take extra time during our clinic visits (much to the dismay of my biller!) to talk about the impact of their diseases and what they wanted from the rest of their days. We would sign DNR’s, then CPR’s, then POLST and finally MOST forms. Yet, often all of this relationship work was overlooked once my patients walked through those hospital doors. Tests were repeated, our forms were declared invalid and new plans of care were developed. My patients would come back to me shaken, disillusioned and farther along the disease process than when they first came in.
I tried hard to figure out a way to stop unnecessary hospitalizations. There must be something I was overlooking. Yet, time and time again patients would move in and out of the hospital as their serious illnesses progressed despite stating clearly this was the last thing they wanted to do. I began to wonder what more I could do. Thinking the home environment held clues, I joined a home-based primary care practice. I tanked up my car, threw together some medical supplies (and chocolate), and headed out into the frontier.
What I discovered changed me forever. The impact of walking through the doors of patients’ homes answered questions in just one glance. I learned so many things. Things like the condition of the yard directly related to the level of stress the family was currently enduring. I learned the look in a caregiver’s eyes that said, “I don’t know how I will face another day.” I learned how the symptoms of a disease can rob the quality right out of the day. And I learned stress has a smell.
I met family members I didn’t know existed. I heard their thoughts and worries. I saw my patients dance with their own wishes while trying to honor those of their loved ones. Finally, I was able to appreciate the full dimension of suffering. And that our healthcare system did not have the answers.
When I cared for a 40-year-old woman ravaged by a severe neurodegenerative disease, it tipped the scales. This woman had been “living” on a ventilator in a near comatose state in a facility for months. It appeared her decline was progressing so her family moved her back home for what would be her last days. Hospice would not accept her as she was on a ventilator. So, I and my physician partner took over her care. She had a team of nurses, care givers, physical therapists and pulmonary therapists attending her needs around the clock. I visited twice a week. We worked hard to make her comfortable. With the input of my physician (and every other colleague in the practice!), I constantly reworked her symptom management plan. We used doses of opioids that made us sweat. I tentatively held family meetings, trying to tease out the medical care this woman would want.
Months went by and this woman still existed. I encouraged family discussions again and again. Finally, general consensus of what this lady would have wanted was reached. With MD POA consent, we moved forward with compassionate extubation. I wish I could tell you we were able to perform this at her home surrounded by her loving family. However, not all the family was loving. And not all the family wanted this step. In addition, the logistics were overwhelming. Would we have enough medication to make this go well? What if we needed something that we did not anticipate? How does one run out to Walgreens at 2 a.m. asking for stat opioids without them calling the police? I looked to research for the answers but found no guidance. I asked my medical partners, “Had anyone done this before? Can someone help me with this?” The answers repeatedly came back “No.” In the end, we transferred this woman to an inpatient hospice setting. Upon arrival, I was asked to relinquish care and step aside. I do not know how things went. The only report the hospice team would later share was that “the extubation was eventful.” Sigh.
I walked away from that involvement dejectedly. There must be a better way. It wasn’t long after this experience that I discovered Palliative Care. Retrospectively, I realize how unprepared I was in managing this woman’s final days. If I had had the skills I have since been taught or had walked this journey with a Palliative Care team beside me, things would have gone so much more smoothly.
I now work in community palliative care, seeking to join forces with my primary care partners while mentoring clinicians new to palliative care. This is my jam. I am where I want to be.