Stories from an accidental Hospice Nurse by Shawn Brast, MSN, RN, CHPN

Professionally, the strangest thing has happened to me. I fell into my calling! It turns out I am an accidental hospice nurse. My prior jobs were rewarding, exciting, and shaped me in ways I can’t even begin to express. Hospice, however, completely caught me off guard.

At times, I find myself completely overwhelmed, thinking, “I can’t believe I just witnessed that,” or “Oh boy, I am not prepared for this.”

My healthcare career started in 1985 when I got involved with the volunteer fire department and became a firefighter. Later, I became a paramedic and then a nurse. Those who knew me early in life would be surprised to find out that I would become a nurse. I was “conned” into the profession by a brilliant lady named Dean Gertrude Hodges. When I was introduced to her, I gave her 50 reasons why I couldn’t be a nurse, and she gave me 75 reasons why I was going to start my training on the spot.

As a nurse, I have worked in the emergency departments and intensive care units but the bulk of my career has been non-traditional nursing roles. Such as flight nurse/paramedic on helicopters, airplanes, and ambulances.

Over time, I learned my first passion is clinical care and my second is education. When you combine the two, it’s absolutely the best of both worlds. In my career as a nurse educator for a critical care transport team, I arrived at a point where it was time for a change, though I didn’t realize it at the time.

I started working a weekend job as a hospice nurse, in addition to my educator role for the critical care transport team during the week. A 60-hour work week was a bit of a grind. My short-term goal was to make some extra money to support my desire to pursue a doctorate degree. The strangest thing happened: after 30+ years in healthcare, I found my calling as a hospice nurse. Routinely, I am granted special access to some of the most intimate moments in patients’ and families’ lives. With my short experience as a hospice nurse, I have come across some awe-inspiring moments that have provided life lessons that must be shared for the greater good.

 

Story 1: Autonomy Above All

In my training, I learned about three patient archetypes by Dr. Tony Riley: the Warrior, the Diplomat, and the Pacifist.

The Warrior endures pain in the hope of finding a cure, prays for a medical miracle, and fights what they believe to be the “good fight” until the very end. This is a challenging group that may not accept hospice at all or waits until the very end. This is the group I have found to be the most rewarding even though they find their hospice philosophy late.

The Diplomat also endures pain and suffering but was initially voiceless, finding themselves in the hospital, lacking the insight to find their own hospice philosophy. This group takes a roundabout journey and tends to be quite frustrating with the waxing and waning decisions in their wants, needs and desires in and around the hospice philosophy.

The Pacifist figured out their hospice philosophy early on while living with an extended terminal diagnosis. They were able to make their wants, needs, and desires clear to their family and caregivers. They avoided hospitals and medical interventions and prayed for a peaceful passage. This is, hands down, the easiest group to work with.

Our patients are not just “patients.” You won’t hear a hospice nurse yell, “The patient in room 12 is having pain!” We refer to them by name because they are people at the center of their own care. They are, in fact, in charge of the care we provide.

The problem is that I have a bad habit of using the term “patient” from the bulk of my professional career. In part, it was a coping mechanism when I was in uncomfortable situations and needed a barrier. The second challenge is that I am still obligated to protect the anonymity of those I serve. So, I will need to use the term “patient” despite the fact it now bothers my new sensibilities.

The hospice journey a person takes is a reflection of how they have lived.

As an individual, who you were prior to your terminal disease simply becomes accentuated, sometimes dramatically. Anger can become the fuel for life. In hospice, we don’t distance ourselves from any patient or family member. We run toward the ones that others want to distance themselves from because of their terminal diagnosis or the “background clutter” in their lives. Remember, these are the Warriors. There’s no such thing as a difficult patient or family—that is just an opportunity to hone your craft!

I found myself working with a gentleman who was every bit the description of mean and angry. He had managed to estrange himself from everyone in his life but a single neighbor. The challenge: he was dying, and whether he liked it or not, he needed our help. He was a medical shut-in. His only two pleasures were chain-smoking and lashing out at people. He was disagreeable to everything, refused all interventions, and was verbally offensive even on his best days. This wasn’t my first rodeo with angry patients, but it was my first with an angry, actively dying patient with recognized unmet needs for whom I was responsible. All the while, the eyes of my more seasoned colleagues watched from a distance.

When I first encountered this gentleman, my goal was to quickly distance myself. The chain-smoking unfiltered cigarette smoke was sickening in a small home with an ambient temperature hotter than the summer weather outside. In addition, the verbal abuse was more than any healthcare provider should have to endure. He would immediately decline medications and other support without a rationale. If it wasn’t a menthol cigarette, he believed it wasn’t medicinal. How was I to be of any assistance?

However, the uniquely exceptional neighbor kept calling me back and advocating for this gentleman. He was concerned with the progression of his shortness of breath and general pain, despite the repeated encouragement for medications to improve the end-of-life symptoms that were manifesting. Despite multiple attempts, all offers for assistance were declined by my patient. His neighbor was just as frustrated and overwhelmed as the team was. I kept rationalizing to myself that other patients needed my help more.

But here is where it got complicated. How could a neighbor with a rocky relationship be such a strong advocate? Honestly, he advocated harder than most high-performing families I have come across. There were stories about how they had disagreements over the years and did not see eye-to-eye on most everything. My patient’s disposition was frequently no better toward his neighbor during my encounters than it was toward me. But his neighbor continued to support and advocate for him. “If I don’t, who will?” the neighbor would say.

But here is the lesson: my patient’s neighbor understood that a man will die as he lived. The sooner you accept that, the faster you become enlightened to the intrinsic nature of the individual.

The essence of my patient’s needs was for us to respect his autonomy and self-determination over the perceived value I placed on comfort, environment, and safety. I had heard this spoken about by my colleagues prior to this experience. However, seeing it in its raw form now has an indisputable meaning. The lesson here: respect my autonomy over my safety, as I will die as I lived!

 

Story 2: The Big Three

I don’t remember this encounter. My only recollection is what was shared with me by a family member a year after the fact. By this time, I had seen over 1,200 patients. If this sounds impressive, it’s not! In the grand scheme of things, I am still a “baby hospice nurse” at this point.

It was the middle of the week, and by coincidence, I had my work phone on me. Normally, by this time, the battery had died, and I was not expected to answer it until the weekend anyway. But the phone rang, I didn’t recognize the number, and I answered it, thinking it was an issue from the weekend. A middle-of-the-week cell phone call was normally an administrative issue from an encounter with the last cluster of patients I provided care to over the weekend.

The voice on the phone asked if this was, “Shawn Brast?” I said, “Yes, how can I be of assistance?” “You’re not going to remember me, but a year ago, to the date and time, my mother passed away,” the voice said. “I have been waiting a while to let you know that I am OK and I have some things I have been waiting to share with you. I need your time and attention now!”

This just piqued my curiosity! What could the core issue of this call be? At this time, I had a sinking feeling in my gut, probably because of my bias from previous experiences in emergency medicine.

I asked the caller on the phone, “How can I be of help? You have my undivided attention.” The female caller began to describe the situation of her mother being in respiratory distress, in pain, and agitated. This type of situation is very difficult to manage in any care setting, let alone in the home. We refer to this as “The Big Three.” She continued to describe the situation where her mother could not get comfortable, was getting out of bed, fell, and had a profound degree of shortness of breath that she was unable to speak in full sentences.

On top of this, she told me that she had been independently taking care of her mother and there was no other support from family. At this point in her story, I was sure she was going to be angry at me or state that she was suicidal. But again, I was wrong. Remember, “baby hospice nurse!”

She shared that on my arrival, she was at her wits’ end with being awake for the last 72 hours, scared, overwhelmed, and questioning everything. I was told that we were able to get her mother back into bed, cleaned up, and medicated to where her mother’s symptoms were adequately managed. During the visit, I stressed non-pharmacologic interventions. This was the easy part, as it provided the patient’s daughter autonomy in the care of her mother. This is what she focused on the most in her description. What I shared for the non-pharmacologic interventions.

Her story then revealed that I had to have a conversation with her that her mother was actively dying. A discussion no one wants to have, and for the most part, many might be expecting but denying. In my mind, I acknowledged that in the United States, we don’t “die well.” By her report, I shared how the symptoms and my assessment told the trajectory. We discussed self-care for her and how her mother’s trajectory would most likely have a very short course for her death—a matter of hours, at best.

One point of contention was the concept of the last dose of medicine and the last breath taken. I discussed with her that in all conceivable situations, there is always a last dose of medicine and a last breath taken. It’s unavoidable, but not necessarily a cause-and-effect relationship. The best available research tells us that it’s the disease course and not the proper dosing of medications that is at the core of her concern. Lastly, the caller on the phone discussed “what if” scenarios that I had shared with her and the best course of action for her to take with her mother.

The last of the fears the caller described was her fear of not being present for her mother’s passing. She wanted to make sure her mother was not alone. As the nurse, she described probing question I had asked and that I did not give her a “straight answer.” In that moment she shared with me the question I asked her, “Are you sure that is what your mother wants?” The daughter shared with me that she did not have an answer at that time. She then told me I stated, “There is no question your mother knows you’re there, that you love her and have been caring for her. Maybe your mother needs some space and for you to be close by and present.” The caller then described that this conversation gave her permission to step back, care for herself, and that this allowed her to better manage her mother’s care, her self-care in the moment, and her grief later on.

The caller then told me I had left the home and had to return several hours later because her mother had passed. As the story was shared, on my return, the caller’s mother had died comfortably, with her daughter in another room, and there was comfort in that for her, and probably her mother.

Then she shared with me that experience shaped her in such a profound and positive way. The reason that it was positive was because our discussion reframed the event, and that our conversation was successful only because of all the conversations before it that led up to ours. The caller stressed that it was not the medicine she was most thankful for, but the “all in the moment presence” that helped her the most. This led her to feel that she was well-supported. It was all of the intangibles that made such an incredible impact on her life after her mother’s passing. It was at the end of our conversation that I learned my caller was a nurse as well, and this made her feedback to me even more impactful.

The two big lessons with this story are that at the core of a crisis, we all just need to have some sense of control. This was achieved by the education of end-of-life symptoms and the difficult discussion of the prognosis of death.

The second lesson is the reframing of a long-standing belief. I was always under the impression that when I was being thanked for the service, care, or guidance I provided, it was about my tangible skills. It turns out, I totally missed the boat on this one. What I was being thanked for was my active engagement, the ability to help reframe a bad situation, to help a patient or family member gain some sense of control, and my ability to just be silent and in the moment.

 

Story 3: The Lieutenant Colonel’s Question

On my arrival, I was warned by the family the patient can be difficult, and I was asked if “I had my A game on today.” The family mentioned their loved one was retired military and had strong military self-identity as it represented most of his adulthood. Upon coming to the patient’s makeshift bedroom in his library, I knocked loudly three times, asked permission to enter and announced myself as one of his nurses.

As I introduced myself to a patient and the rest of the family, I was immediately asked, “What are the two things in life that all humans must do?” This totally caught me off guard. I had not even fully introduced myself.

As I looked around the room to get my bearings and gather my thoughts, I immediately took notice of the significant amount of military memorabilia, a pipe collection like I had never seen before, and another wall full of academic achievements.

I then responded to the Lieutenant Colonel’s question, “Taxes and death!” “Incorrect,” he said, “not even well thought out. I was expecting better!” the Lieutenant Colonel stated. So, I responded back, “I am pretty sure smarter men than I came up with that one.” For which he said, “Doubtful.”

At this point, I was able to redirect our conversation to the purpose of my visit. Even on hospice and lying in a hospital bed in his living room, my patient had a command presence. There was no doubt who was in charge here and it was not me.

As I was wrapping up my visit, the Lieutenant Colonel asked me the question again. I asked him for more context. “What more context do you need?” the Lieutenant Colonel stated. “Come on, answer a dying man’s question!” I responded, “I am going to need to research this one a little more unless you are willing to share the answer.” The Lieutenant Colonel stated, “You are not getting a free ride here. I expect an answer on the next visit.” I then tried to explain I might not be the nurse on the next visit. He did not want to hear that. As I was walking out, a family member walked me to the door and she let me know that her loved one has always been like this. For which I responded, “A Marine Officer,” and she stated yes.

Strictly by chance, I was scheduled to visit the Lieutenant Colonel the next day. Regrettably, I did not go entirely prepared. I was a bit distracted with the list of patients I was seeing and at the last minute thought the conversation probably would not come up. Boy, was I wrong!

The first question out of the Lieutenant Colonel’s mouth was, “Do you have my answer? What are the two things that all humans must be able to do?” On the fly, I responded back, “Well, Sir, I did a little research (I Googled it) and had a conversation about your question with a couple of trusted colleagues and loved ones. I completely understood why my previous answers were wrong. Not everyone pays taxes, and dying doesn’t have much to do with living.”

“So, what is your amended answer?” asked the Lieutenant Colonel. “Well, Sir, I was not successful in coming up with an answer I believe to be the correct answer.”

He then fired back with, “That’s a shame! I was looking forward to your response.” In an effort to recover, I asked him about the origins of the question in the hopes it would provide some clue to the answer. I was totally unsuccessful, and the Lieutenant Colonel held fast. He was not going to share the answer. By the end of my visit, it was clear that the Lieutenant Colonel was demonstrating signs of decline. He did not have the same level of bravado that he had on my last visit. He knew it, and his family was seeing it as well. With that being said, I fully did not expect to see the Lieutenant Colonel the next weekend.

I was pleased to see the Lieutenant Colonel’s name on our visit roster for pre-scheduled visits and promptly contacted my colleague who was scheduled to meet with him to see if I could switch patient loads. During the week, I had the discussion with many colleagues and friends close to me. I had a variety of answers, but none that I believed were spot on. His question, in fact, even kept me up at night, many nights.

On my third visit with the Lieutenant Colonel, there were clear changes. His family informed me he was not eating, required intermittent doses of Morphine to help with his breathing, and just could not get comfortable. As I walked into the room, I stated, “Top of the Morning, Sir!” His eyes opened and asked me if I came to share my answer. I stated, in part, but I wanted to see how his comfort was and how his night was. He stated, “I am more interested in getting a response to my question. What do you have for me?” Again, it’s clear to me I am definitely not in charge here.

I responded, “I researched long and hard. I reached out to my most trusted mentors and even did a search in PubMed, to no success. I am no closer to the answer than when you originally asked me the question.” After a few minutes of small talk, I was able to transition our focus to completing my assessment, completing some teaching with the family, and reframing some plan of care goals.

The Lieutenant Colonel later stated, “Most people do not get the answer. And as such, I don’t share the answer. But it seems I might be short on time, and you seem to be in desperate need of an answer. Especially if you are going to do the work that you are in. So, this one time, I will make a special concession.”

The Lieutenant Colonel continued on, “The answer is pretty obvious to a few.

The two things all humans must do is learn and then be able to cope with the decisions they made.

In my life, I have lost track of all the things I have had to learn, for one reason or another. That, in fact, was the easy part. Anytime you learn something, you then are bound to put it to use. Frequently, I have found coping to be more challenging than learning any skill or concept. The most difficult of the two is being able to cope with the choices, decisions, action, lack of action, and everything that goes with it.” He shared this earth-shattering information with me all the while being short of breath and well aware he was actively dying.

At first, I was not sure what to make of the Lieutenant Colonel’s feedback. In the moment, I found myself overwhelmed. I knew straight out, this was one of the most powerful gifts I have ever received. I thanked the Lieutenant Colonel for sharing that with me. Those in end-of-life frequently have a moment of clarity that provides the great hidden answers in life, and some even share them.

I informed the Lieutenant Colonel and family I planned to return tomorrow. At the end of the visit, I sat in my truck, perfectly still, engine off, listening to the rain hit the roof of my truck. I just sat there trying to process that encounter, thinking to myself, “What just happened? What a gift!”

His answer just rang in my head as loud as a gong when I think back to my past. I believe his assertion is right on. The things we learn and the choices we make all have pluses and minuses. Most of the time, we don’t think them out for any future ramifications. We take action on the fly, hopefully using our best judgment at the time, considering risk versus benefit. But when we get to the other end of our decision, we must now learn to cope with those decisions—good, bad, or indifferent.

As I sat there contemplating this interaction, the second thing that was clearly evident to me was that I gained a secondary gift like no other gift in the past. It helped me understand the context of how hospice philosophy becomes developed by a patient or family; why the conflict occurs, and how well a family pulls together. The thing that resonated the loudest in my mind is the importance of sharing this story. It’s not uncommon to think back to past actions and to have regrets or joy. But how often do we consider the future as it relates to how we may have to cope with our actions or decisions?

The next day, I came back to the Lieutenant Colonel’s residence. I was met at the door by family, who indicated the Lieutenant Colonel had a restful night but was not responsive to voice. After a thorough assessment, it was clear to me that the Lieutenant Colonel was actively dying. I wanted to get the best assessment I could to help frame my conversation with the family. In doing so, I prepared the family that I needed to yell really loud and at the top of my voice, I then yelled out, “Semper Fi, Marine!” And in return, a very soft “Semper Fi” was heard by the family from the Lieutenant Colonel. His last words.

For the next 30-45 minutes, I then needed to explain to the family, based on my assessment, that their patriarch would die within hours to days. This is always a difficult conversation. My colleagues and I refer to it as the “courageous conversations.” The goal is to figure out how the family wants to hear what is going to happen to their loved one within the coming hours. As a standard practice, I partly gauge this conversation by the family’s willingness to ask the question, “How long do you think he has?” Honestly, for the most part, this is an incredibly complex question to answer. A “right” answer never feels just right, and a “wrong” answer could have a negative impact on planning, arrangements, and long-term outcomes for the family. But in this case, it was pretty clear. I focused on the importance of the major goal—the Lieutenant Colonel’s comfort. His family appeared to be more comfortable receiving my feedback than expected. They were looking for validation of what they already knew.

As I reflected upon my last encounter with the Lieutenant Colonel and family, it was clear that he shared something with me something that has had a profound impact on me for a very long period of time. In fact, I am pretty confident I will never forget his last gift to me.

Somehow, this thought then digressed into, “Why did this happen? Why would I receive such a gift from a dying man?” At the time, I did not have an explanation. Maybe dumb luck, maybe he was reading me as much as I was trying to get a read on him, or just maybe he had something to say.

Much later, my answer for this became clear. I connected with the Lieutenant Colonel and his family in the moment. It most likely happened because he was not a “patient” to me, but a person I was invested in and demonstrated a clear respect for him, his family, and his contributions by preserving his autonomy and title. I know full well that his sharing of that maxim would have never happened in any other situation. Simply because there would be no reason for it. A chance opportunity to receive such a life lesson in any other situation would be unrealistic. There would be no reason to make the connection outside of my professional world.

The strategy of preserving autonomy and title is now one that is hard-wired into me. Time and time again, it pays off.

Two days after visiting the Lieutenant Colonel, I heard from his team that he passed away, comfortable, with his family at his side and by all reports—a good death. This brought me comfort and solace.

These types of “Aha!” moments continued since these three experiences, but it was these three experiences that set my direction to answer my calling. In doing so, I am becoming a better person, clinician, educator, researcher, student, husband and father.

——————-

Shawn Brast, MSN, RN, CHPN, has been the Clinical Education Manager at Gilchrist Hospice in Baltimore, Maryland since July 2015.

He holds an Associate Degree in Nursing (1992) from Baltimore City College, a Bachelor of Science in Health Systems Management (2005) from the University of Baltimore, and a Master of Science in Nursing Education (2011) from Morgan State University. He is currently pursuing a Doctor of Philosophy in Palliative Care from Lancaster University in England, with an expected graduation date of 2027. His research focuses on the withdrawal of life-sustaining therapies outside of a hospital setting.

You can connect with him via his LinkedIn, Linktree, or by email at s.brast@lancaster.ac.uk.