Reflecting and Coping With End-of-Life Care: A Student Perspective
Estimated Reading Time: 7 minutes
The intensive care unit (ICU) is a rare and rewarding environment to encounter physical therapy.
I have seen firsthand how our presence in this setting is absolutely necessary.
I recently completed a clinical rotation in the ICU, and I learned about the inner workings of the hospital and the teams of professionals that it takes to provide care.
I grew a lot as a student of physical therapy during this unique opportunity in the ICU, and I am proud of the impact our profession has on our patients so early on in the continuum of care. Many days were filled with small steps toward progress and strong demonstration of courage among extreme measures of lifesaving supports, palliative care, and hospice care.
However, I encountered a few situations over the course of my clinical experience that deeply saddened me and challenged my clinical reasoning: circumstances that can be difficult to imagine unless you have come face-to-face with the various extremes of lifesaving measures that exist, and experience the sadness when those measures fail.
One of the situations I encountered was heartbreaking and unique, where a patient chose an end-of-life advanced directive in a matter of hours. On a holiday weekend that is typically an uplifting day shared with family, my clinical instructor (CI) and I received orders to evaluate and treat a middle-aged man who was ill and had a terminal diagnosis. Per chart review, we found out that he was considering either palliative or hospice care and wanted to conclude lifesaving supports later that day. This decision became official a few hours later and our patient's nurse requested a physical therapist (PT) and an occupational therapist (OT) to cotreat an "evaluation" to transfer the patient to the bedside chair, where he planned to request to terminate lifesaving supports.
Witnessing the patient's request and partaking in his end-of-life directive really forced me to contemplate and consider our physical therapist scope of practice and our role in complex situations. This becomes more complicated when one acknowledges the roles among the interdisciplinary care team once the patient chooses hospice. The conversation went back and forth as to whether this was a PT–OT role or nursing role to complete the dependent transfer. Unfortunately, since no recovery was anticipated and a decision to terminate life support had been made, it was difficult to understand how physical therapy and occupational therapy would be needed and how they would be beneficial. My CI determined to proceed with completing the evaluation in order to recognize the patient's goal and to ensure a safe transfer to the bedside chair.
Throughout the evaluation my mind was racing, but I remained very quiet. I attempted to think of the session as if it were any patient who we were transferring, in order to keep my emotions professional. That day and everyday, I strive to be mindful and to always serve each patient to the best of my ability, regardless of their personal factors. In the moment, I found myself blocking out my thoughts of sadness, disbelief, and confusion throughout the transfer in an effort to remain professional, compassionate, and helpful. However, for the rest of the day I was flooded with emotion and thoughts surrounding this entire dilemma. I struggled to process the whole situation, the patient's thought process, and his family's perspectives.
In the end, I wholeheartedly believed it was important that our patient had the autonomy to decide his end-of-life directive and that his dignity was preserved. Because isn't that what we strive for as PTs and health care professionals, dignity and autonomy of care for our patients?
I only knew this kind and pleasant man for 15 minutes, and consequently I felt like I could not fully understand why he would make this permanent decision. I thought about the suffering, pain, and exhaustion he must have been facing for months, as I tried to understand the decision he just made for himself and his family on that day.
Because of this patient and experience, I now have a new understanding of a PT's role in end-of-life care. The decision to ultimately honor our patient's request was the best way that we could serve him once more and give him the autotomy to make his last request.
Later that day the patient passed away in the bedside chair surrounded by his wife and children.
After this experience, I believe in the future that I will be able to derive a decision that is first focused on serving the patient, and second, is within our role as PTs in end-of-life care.
Physical therapy can play an essential role in ensuring safe transfers, for maintaining skin integrity, and positioning patients for comfort, energy conservation, and proper breathing mechanics throughout all stages of life. Although serving patients on hospice is difficult, it's within our scope of practice whether it's in the home or a hospital.
Our patient requested to be transferred to the bedside chair so he could pass on with dignity, as he was adamant to not die in a hospital bed. He wanted to sit in the bedside chair with his wife and children and talk to them while being removed from lifesaving measures. Technically and ethically, if the patient requests physical therapist/occupational therapist services, then we can see the patient while on comfort care.
That day I gained an appreciation for how this dependent transfer was a skilled service, specifically because we were using our evaluation skills to make recommendations for ensuring safety in all aspects of his health. Prior to the transfer we assessed our patient, and although he was very weak, his joint mechanics and range of motion were sufficient for a dependent transfer. We assessed cognition while preparing the patient for the transfer to ensure he was aware and knowledgeable of his decisions. We consciously monitored and maintained skin integrity as we moved the patient to set him up for the transfer, and positioned him in a posture for respiration and comfort in the bedside chair, so he could continue to talk to his family. While I was initially uncomfortable billing for an evaluation that I knew would not lead to any recovery in function, I now appreciate that I was helping progress my patient toward his individual goal.
Comfort care and hospice care has a main focus of managing pain for terminally ill individuals, while also providing positioning techniques to support breathing in all positions and energy conservation. I believe physical therapy has a pivitol role in providing end-of-life care because we are trained to treat the whole person, to step up to compassionately serve patients, and to ultimately deliver the dignity these individuals long for at the end of their lives.
That patient and experience has stayed with me, but since then, I have used several techniques to help me cope and better understand the situation.
As students, we are eager to learn, have a vast array of experiences, and develop our skills. My CI gave me the opportunity to opt out of participating in the patient's care; when I thought for a moment, I decided it would be best for me to assist, so I could see every opportunity for physical therapy to impact patients. I am grateful to my CI who helped me process the situation and debrief as needed.
I found that talking and reflecting with several people who I trusted, including faculty, classmates, chaplain, and family was key for me to cope with this unique experience. I debriefed with a small group of my peers and faculty where I shared this story. Together, we applied a clinical narrative process, which is a reflective method that takes into account all perspectives involved and often comprises an ethical dilemma.
This opportunity really helped me realize the impact this patient had on me emotionally and developmentally as a student of physical therapy, while also helping me cope and understand the impact we had on our patient. Further, it allowed me to realize the significance of compassionate care throughout the continuum of care and the role it has in helping patients reach their goals.
Throughout this experience and my clinical rotation, I wrestled with ethical dilemmas and challenges in making the clinical decision that day, but I also learned a lot about myself, the role of PTs in the ICU, and autonomy at end of life.
From one student to another, please consider talking about difficult clinical experiences and reflecting on the reasoning for your actions. I invite you to consider the role of physical therapy in hospice care and to welcome challenging and difficult situations as a learning experience, because one day we will be the PTs making the decisions that will have the ability to transform our patients' lives and help them maintain dignity, even in the last stage of their lives.
Alexandria Muller, SPT, is a student at Creighton University.