Talking and Working with Dying Patients: True Grief and Loss
Abstract and Keywords
This article reflects on the lessons about grief and dying acquired by a palliative care and hospice physician over the course of her training and career. The article describes how she views, engages, and incorporates grief into her work as a health-care provider based on her personal experiences and lessons learned from mentors, patients, and families. It describes ways to better understand the types of loss one can personally experience and need to “tag your baggage” as a way of loss experiences before patient discussions. The article then emphasizes the importance of managing one’s expectations when working with a patient and/or family facing end-of-life issues, citing a pervasive concept in palliative and hospice care known as the “good death.” Finally, it discusses the role of communication and supportive skills in dealing with dying patients and their families, along with debriefing and self-care.
Like all physicians, I am impacted by the death of a patient. I have patients I remember with a wistful smile as I remember their antics or their laughter. I also have cases that haunt me. I see the patient; I remember the family’s reactions when I spoke to them about their dying child. I ruminate about what I could have done differently, replaying events and decisions. I have moments of self-doubt followed by reassurance that I did the best I could with the data I had at the time. I also have a few cases where that reassurance has yet to come. Unlike most of my physician colleagues, however, I am a pediatric palliative care and hospice physician. As such, I am expected to be “okay” with death and be an expert in managing grief.
Yet when I did my fellowship, there was no evidenced-based practice to teach me how to become comfortable with these expectations. I was given no guidelines, let alone evidenced-based research, during my fellowship on the topic of physicians and grief; rather, I just learned through experience. Certainly, mentorship and apprenticeship are a time-honored tradition in the art of medicine, and I was a recipient of great teaching. However, there is a growing sense in medicine that we can do better.
The goal of this article is to impart how I view, engage, and incorporate grief into my work as a physician. Unlike the other chapters in this book, this one is not driven by evidenced-based research or best practice models; instead, it stems from experiences that I have had and lessons learned from my mentors, patients, and families. My hope is that readers will be challenged toward self-reflection and perhaps provided with some skills to allow them to analyze and, if necessary, adjust their relationship with grief so they can practice both the best medicine and self-care possible.
(p. 203) Identifying Grief
As a second-year resident, I remember a night in the emergency department. A girl came in with profound emesis and profound lethargy. The differential was daunting, but ultimately we determined that she was in diabetic ketoacidosis and diagnosed her with diabetes mellitus. I eagerly entered the room to discuss what I considered to be relatively “good news” as it was a manageable disease process. Clearly I was naïve, for as I relayed the information in my most empathic manner, I invoked a wailing from her mother that lasted forty-five minutes: enter my understanding that death is not a mandate for grief and that one can grieve the promise of a type of life as much or more than the loss of a life.
Since that embarrassing educational moment, I have strived to better understand the types of loss one can experience. I have subsequently learned about the loss of “normalcy” that comes with the diagnosis of a chronic condition. I have also been educated on anticipatory loss, which is the knowledge that loss is coming and the grief one feels anticipating this loss. There is also the grief of an imminent death both for patients and their loved ones who sit vigil. Finally, there is the grief that I experience as a health-care provider.
A grieving health-care provider comes in many forms. I have provided empathic listening to colleagues as they cognitively express their grief by reviewing labs and images and their frustration that their responses to this data did not “save the patient.” I have also been there as colleagues cry and remember what a patient’s life meant to them in a very personal way. Finally, I have had to acknowledge my own grief, which has been the hardest for me to both recognize and accept. My grief is that no matter how good I am as a palliative care and hospice physician, I cannot protect those crying in front of me from the waves of grief that are engulfing them. My grief is one of being so humbled at the idea that I personally have never yet felt the loss that my patients and families are experiencing but knowing that I will, and that anticipatory grief takes my breath away. I package this grief away on the vulnerable days and, in doing so, I risk being a less effective physician.
Evidence supports this risk. Finlay and Dallimore (1991) asked parents who provided better disclosure regarding a patient’s death after a trauma: the police officer at the scene or the physician. Participants found police officers to be superior, noting that they exhibited greater compassion by showing their distress and concern and demonstrated less professional detachment. I first read this study when I was a fellow, and I strongly questioned the findings. However, as my fellowship continued, I reflected again on the study and began to recognize its truth. In general, I think many health-care providers seek restraint over emoting when participating in end-of-life care and view this as a conscious act of professionalism. However, I think this also serves to create boundaries that are often a primary pillar of self-care in medicine. If one does not emote, others do not emote (as much), and thus one can protect oneself from a wave of emotions. We can avoid facing our own vulnerability.
(p. 204) Vulnerability is a scary word for a physician. Many of us, I suspect, are drawn to the profession because we gain comfort in identifying the bucket that a patient’s symptoms fall into, applying the labeled diagnostic sticker on the bucket and then following the evidenced-based algorithm to assist in making a patient’s life better. We feel in control, which minimizes our sense of vulnerability. However, emotions do not often follow algorithms, despite medicine’s attempt to force them into one through communication acronyms, cue cards, and controlled simulation cases with mock patients. And while these educational interventions have improved our ability to communicate, I would argue that these actions have not improved our ability to self-assess and understand our own emotional relationship with death and grief. Yet for me to have the courage to be vulnerable, to be more demonstrative of my grief with patients and families, and to improve end-of-life care, I needed to gain understanding through introspection in two particular areas: my own experiences in death and grief and my expectations regarding how an emotional event such as a death should occur.
“Tagging Your Baggage”
I have coined the term “tagging your baggage” to represent the necessary work of recognizing and labeling prior loss experiences. All of us have experienced loss, and we retain the impact of these losses such that we experience future loss through the lens created by prior losses. The accrual of loss is the baggage we carry with us. The task at hand is to be aware of our baggage and tag it so we know what is shaping our lens.
For me, tagging my baggage is an active step of checking in with myself before entering a room. Am I anxious about the pending conversation? If so, why? Am I overwhelmed with a sense of protectiveness for the patient and/or family? If so, why? Am I emotionally exhausted and pondering the feasibility of having a resident or nurse give the bad news because I just realized I have an email that has become more paramount than the conversation at hand? If so, why?
These are just examples, and I cannot guess what each reader’s baggage might be. The point is that we all have a piece or two of baggage, and if we are not actively identifying and tagging that baggage, we unknowingly bring it into the room with us when discussing difficult news, which in turn may negatively affect our effectiveness as physicians. Two examples follow.
I was consulted on an infant who had just been diagnosed with a lethal peroxisomal disorder. As I approached the room to meet the family, a doctor from a different consulting service emerged from the room. She became visibly upset on realizing that palliative care had been consulted. She then quipped that the “murder for hire service” had just been (p. 205) consulted. Having become used to not being anyone’s favorite consulting service line but surprised by her vehemence, I asked if she questioned the high risk of mortality associated with the diagnosis. She acknowledged the known life expectancy of less than one year but voiced concern that the family was not ready to be devastated and felt that palliative care was inappropriate to insert. Over the next several days, the physician’s discomfort with my participation in the patient’s care plan escalated, and she stated the parents’ discomfort in my presence warranted the discontinuation of palliative care. No one else had detected parental discomfort in my presence, and this was relayed to the physician. Still unsatisfied, the physician asked that I accompany her while she asked the mother if she was comfortable with palliative care’s continued participation in her child’s care. Initially, the mother had difficulty understanding the question or why it was being asked. This awkwardly led the consultant to explain her concerns that my presence made the mother uncomfortable and her desire to protect her from this discomfort. The mother then replied, “My daughter is going to die. Of course I want the person who specializes in this to be in the room.”
After this encounter, I gave the physician full credit in her willingness to collaborate with me. I had the sense that the tension had broken and her fears had dissipated. The patient lived for six more months, and, per the family’s wishes, she died at home in her mom’s arms.
Since that encounter I have had the opportunity to develop a very good working relationship with this physician. A year after our initial encounter and over an innocent cup of coffee, the physician relayed that in her childhood, she once had a sibling. At approximately six months of age, her sibling fell ill and went to the hospital but never returned home and was never spoken of again. It was not until adulthood that this physician insisted on knowing what had happened to her sibling. She admitted that pediatric death was and would continue to be traumatizing to her. This baggage had colored her interpretation of this mother’s actions and intentions.
When I was completing my palliative and hospice medicine fellowship, my grandmother’s overall health status rapidly declined. My aunt summoned me to her bedside, and there I realized that my grandmother was actively dying. My aunt inherently must have understood a part of my grandmother that I did not, for she comfortably decided that it was time for her to go home. I decided that I would stay and give the gift of presence as my grandmother died. I called my father, an internal medicine physician, and discussed my grandmother’s current status. He lived approximately eight hours away and, based on my assessment, would not arrive in time to be with her. I thought my presence would bring him comfort, so I emphasized this over the phone. To my surprise, he announced that I was incorrect and that my grandmother was not dying. To this day, I am uncertain how I so easily abandoned my professional self and became just a daughter. Yet I did, and as such, I immediately agreed with him and followed his directions to go home. That night, my grandmother died, and no one was with her.
(p. 206) To this day, my guilt regarding this is a piece of my baggage. I catch myself needing to be superhuman and trying to be present and available to all of my patients and families as a child lies dying. However I have also come to realize that this baggage can impede my ability to correctly read a situation. The reality is that I am not the perfect fit for every family, and my presence does not bring everyone solace. Some people need to complete this journey by themselves, and my baggage creates a risk of me not detecting this nuance and inserting myself where it is not desired. Additionally, I do not have the emotional capacity to be that present for every patient, so I run a real risk of this baggage inducing burnout.
Now I check in with myself on each and every case. I label my baggage and determine whether or not it goes into the room with me. I hope that it allows me to be the best fit I can be for each patient while simultaneously allowing me to remain balanced and fulfilled in my interactions with my patients.
Like our own baggage, we need to also be aware of our expectations when working with a patient and/or family facing end-of-life issues. A pervasive concept in palliative and hospice medicine is known as the “good death,” and it is a noble and worthwhile concept. However, I worry that we unknowingly assign a unidimensionality to the concept, which then undermines our intent and our ability to assist a patient with attaining a good death. Two cases to illustrate follow.
I had the opportunity to work with a reticent seventeen-year-old male with terminal sarcoma. Due to refractive pain, he was admitted for inpatient end-of-life care. We spoke with him about his goals for end-of-life care, but he retained his quiet ways and would discuss only his desire for better pain control. We also had several conversations with his mother regarding his imminent death, but she voiced an inability to come to the hospital and no other family was available to visit. The patient ultimately died with a familiar hospital chaplain at his bedside and nursing support that expertly managed his pain. Afterward, I overheard a distraught oncology nurse voicing her anger that he had “died alone” and labeled it a “horrible death.”
I also had the opportunity to work with a hospitalized six-week-old identical twin with a glycogen storage disorder who was actively dying. His twin was also affected but not as (p. 207) severely and currently lived at home with his mother. We had a series of conversations with the mother regarding his declining status and his imminent death. She visited but ultimately stated that she could not bear witness to his death, only to go home to his twin who would also one day die. The nurses were stunned and scared by her absence, voicing their lack of experience with pediatric death and a worry that he would die alone. They came up with a schedule whereby nurses volunteered their time to hold him. This schedule lasted for five days until he died in the arms of one of the nurses. The nurses described his death as “beautiful” and the event as “an honor.”
I was struck by these two cases, for they involved patients dying without the presence of their families yet the staff’s interpretation of their absence was received so differently. I believe that the different expectations of the two nursing staffs impacted their perceptions. Death is an expected part of an oncology nursing job description and, as such, they frequently experience death. To manage this difficult part of their job, they have an expectation that, should their patient die, they will have the opportunity to provide the patient with a good death. In speaking with the oncology nurses in this case, a good death meant having family present. Conversely, the other group of nurses had no experience with death and thus no voiced expectations of what would constitute a good death. They were able to accept the situation and define a good death for this individual based on this individual situation. As such, they experienced a good death and felt that their patient did as well.
While I too strive for a good death, I often quip that its acquisition is the holy grail of hospice medicine. There is no one set definition of a good death, and the reality is we do not get to define a good death for others. The definition of a good death is intimate, unique to the individual, and based on past experiences, cultural norms, and ongoing hopes. As much as it upsets me to see a cystic fibrosis patient with profound dyspnea refusing opioids based on a long history of fear of opioids or a young adult telling me that he will pursue inpatient palliative chemotherapy solely for the sake of his mother, I remind myself that a good death is not mine to own or define. I try to modify my expectations to permit these nuances and refocus myself on what I can impact: for example, the best pain management I can offer in light of a patient’s wishes, the attainment of a legacy piece, or helping a physician forgive herself for not curing the patient.
To manage all one’s baggage and expectations while simultaneously utilizing exceptional communication and supportive skills to dying patients and their families is a daunting task. I wish I could simply provide a hand-out with the algorithm that would ensure, based on evidenced-based medicine, success in all of these arenas. I have even gone so far as to create the algorithm in the figure. However, I present it with the disclaimer that it is not foolproof.
Medical schools have done admirable work increasing medical education on end-of-life care. Through simulated patients and didactics, physicians are gaining the foundational tools to help patients and families through decision-making and symptom management. However, the task of assisting patients and families with their grief still remains daunting to many physicians. Some of that is grounded in the fear of opening Pandora’s box: If one starts a conversation, there is no telling where it will go, and for people who love algorithms that uncertainty can be terrifying. Some may also fear the emotions inherent to loss and would prefer to neither witness nor experience them. Finally, we fear that we could fail at being supportive and cause more harm than good. I have no simple answers to any of these concerns, but I do believe that conscious efforts to learn a patient’s communication style and needs in addition to develop one’s own communication toolbox can allay fears and maximize one’s impact.
Identify One’s Communication Style
I completed my fellowship in palliative and hospice medicine under the guidance of seven physicians, a nurse practitioner, an art therapist, a social worker, and a chaplain. In other words, I trained with eleven people with eleven styles and confirmed the old adage that there is more than one way to skin a cat. I also learned that the singular theme that allowed each of them to be superb communicators was their willingness to be authentic. Patients and families perceive this authenticity as humanity and, through (p. 209) this, partnerships are created. These partnerships then create trust so that hard conversations can occur. I soon realized that I needed to incorporate authenticity into my communication style if I was going to succeed.
Over time, harnessing my authenticity has unintentionally led to a communication style that is antithetical to any professionalism ever taught to me. I speak to families and patients as I write: casually, with an assumption that I am somewhat amusing, and absent any assumptions of intellect. I assert myself as such because that is my comfort zone, and it has allowed me to best partner with my patients and families. I acknowledge to patients that I was a feisty kid who landed herself in the principal’s office for fighting, so I get what it means to fight the good fight. I announce that I was an average medical student, so I am incapable of effectively using fancy doctor words but pretty good at translating what my smarter physician colleagues say to patients and families. I confess to reading trashy gossip magazines instead of medical journals at home, because I too need distraction at times of stress. I weave these tidbits of myself into our conversation regarding goals of care and how to help a child die with dignity and I hope that parents will see my humanity and open up. It also reveals my fallibility, which helps me at my job because I can focus on being present in the moment, since perfection is no longer an option.
Identify the Audience’s Communication Needs
It would be incorrect to say my preferred communication style is the only style I use. Patients bring their own communication needs, and to be most effective in assisting them with their grief process, I need to identify their style and then modify my own to maximize the experience for both of us. I have learned to pay particular attention to the following:
1. What are the patient’s goals?
This question appears self-evident. Most answer “a miracle,” and then they give the look of “Why would you entertain a miracle?” I ask it because I prefer hearing it out loud than trying to avoid it. Asking the question allows me to provide empathic listening while they discuss this hope and acknowledge it as a commonality of the human spirit to desire a miracle in times of need. I also ask it so I can then ask what other goals they have—for most people have other goals. Armed with this list, I can partner with them to mitigate their suffering through the acquisition of goals such as improving pain control or obtaining forgiveness from others. When I know this list, I can modify my communication style accordingly.
2. What cultural norms do I need to know about?
I ask these both in regard to patient’s self-identified communities (i.e., Islamic, Japanese, lesbian, etc.) but also in regard to a patient’s family microculture. The family may identify with a culture in which women defer to their male partner’s opinion, but this same family may have a very influential granddaughter who holds a subtle but important position when decisions are made. Similarly, just as (p. 210) individuals have baggage and expectations, so too does a family unit, and these will similarly alter the family’s filter for incoming information. To best partner with a family and have a message received well, it behooves one to assess these dynamics and adjust communication accordingly.
3. How does the listener like to receive information?
Some patients love data and others appear overwhelmed by it. While this likely represents a learning style, it also can reveal how much information a listener can emotionally absorb at one time. Both of these issues, learning style and emotional capacity, are paramount when gauging communication style. Sometimes one can easily detect their styles. When I cannot ascertain it, I just ask the patient or family. “How do you like to receive information? For example, some families prefer lots of data while others prefer their doctors to deliver a summary statement. “We have a lot of complicated and difficult stuff to discuss. Which way would you prefer us to speak about your health-care issues?” I have been impressed by how many times patients and families have a clear understanding of their style and a strong sense of how they wish to receive information.
I have also encountered families in which individual members have differing styles. I once had a patient whose father was an extrovert who needed to know every lab value, every medical consideration, and everyone’s opinion. It was also clear that his wife preferred not to ask or be asked questions unless absolutely necessary. I had an open conversation regarding my observations to determine if I was correct. My first communication step was to make some general rules of communication, which included having separate conversations with the father in addition to those I had with the mom. Despite these different communication styles, they were able engage in collaborative decision-making and, as a result, made excellent decisions for their daughter. However, to have a maximal relationship with them, I needed to adopt different communication styles for each of them.
4. Is the patient ready to hear the news?
Patients’ and families’ readiness to receive difficult news as a requisite for successful, collaborative communication at the end of life cannot be overstated. Often mislabeled as “denial,” lack of readiness is subtly different. Denial is often a word we invoke when a patient “does not get it.” I am always amused, in fact, when I have a consult as a palliative care physician to essentially eradicate the patient’s denial. I then need to reveal to my colleagues that I do not own a magic wand that will dispel denial, nor am I necessarily in agreement that it is the right thing to seek. Denial is a healthy coping mechanism that permits our patients to withstand the burdens of medicalization in an attempt to cure. It allows patients to persevere when we wonder where they get their resolve to do so. Denial also allows every health-care worker to come to work every day. How else do I look at a seven-year-old with cancer and not panic that my own daughter is in jeopardy?
So I do not view denial as my enemy in palliative and hospice medicine. Rather, I see it as my job to assess readiness: readiness to receive information, readiness to grapple with the notion that God did not answer prayers, readiness to tell one’s (p. 211) wife that she will be a widow, or readiness to face the unnatural status of being a parent to a child that has died. Sometimes health-care providers do not have the luxury of time to await readiness because clinical needs are urgent. Often, however, we have some time. I spend that time looking for the clues and teach people that the patient’s or family’s readiness journey mirrors that of a smoker pondering cessation. They are precontemplative for a long time and utilize denial during that time as they prepare themselves for the realization of what they must do and endure. Our job as we wait is to have faith that the listener will come around and to modify our communication to acknowledge gently those touch-points of reality, to not pressure the listener to move faster than he or she is able to, and to listen for the cues that the tide has changed and that we may communicate in a much more forthright manner.
Create a Communication Toolbox
It is often around this time in my didactics that a look of fear with a hint of discomfort emerges on readers’ or listeners’ faces. Comprehension of the task at hand occurs: I expect them to present with authenticity but to simultaneously be communicating chameleons that effortlessly adapt to the needs of their listeners. They are officially terrified at the idea of opening Pandora’s box lest they lose all control of the situation and the feared complication of making a bad situation worse materializes. This is when I introduce the notion of creating an individualized communication toolbox.
A communication toolbox is a self-identified collection of phrases we feel are consistent with our individual communication styles, have shown effectiveness in discussing end-of life issues, and that we believe will help us manage the feared complications. Such a toolbox is indirectly referenced when medical students are asked to review cases where bad news was delivered effectively and to remember these phrases when it is their time to give bad news. While I agree with this exercise, I would insert that not all phrases are meant to be uttered by every individual. I learned this all too well during my fellowship.
I was the very first fellow at my hospital; therefore, my teachers were learning how to teach palliative care through me. I had an esteemed attending who eagerly wanted to impart all of his knowledge to me, and I desperately wanted to learn from such a skilled physician. We shared many cases together, and, after some time, I reflected on my observation that men responded better to him than me. He doubted it, but we decided to dissect his approach with the mutual assurance that I would add a tool to my toolbox as a result.
We came up with a communication plan and I applied it to the next grieving father that we met. I walked into the room with a decidedly solemn look on my face. I acknowledged both the mom and the dad in the room but went to the dad’s side. The mom was tearful; the dad appeared stoic. I remained, as planned, pensive, and then after approximately ten seconds, I placed my hand on his shoulder and paused there. I then let out (p. 212) what I thought to be an empathic exhalation just as my mentor often did, utilizing his words, “You have been a good father.” Silence ensued, and not the type of silence we palliative care physicians like. Rather it was an awkward, “please, just let this end” moment as the father purposefully shrugged my hand off of his shoulder, thereby requiring my attending to intervene and repair the damage I had just caused.
My attending and I walked out of the room soon after and just stared at one another. Neither of us had an immediate answer as to why the very tactic when taken by my attending often created tearful, emotive, collaborative fathers but had, when utilized by me, caused a near palliative care disaster. However, I was able to immediately process how I had felt when approaching the dad and especially when I had placed my hand on his shoulder. I felt awkward and imposing. I do not like physical contact with my parents even with a gesture as innocent as the one I had performed. Upon further reflection, I am certain that the dad felt my hesitation and assumed I was uncomfortable with the material at hand, not with the physical contact, and he assumed insincerity in me to the point that I could not make the connection my attending could. Then I began to realize that a toolbox is an individualized collection based on some degree of trial and error. Some tools I could wield with greater ease than others, and I was going to have to risk failure in order to ascertain the comfort and effectiveness of each tool I came across.
These days I tell people that they need a communication toolbox, but it has to be filled with phrases that they have tried and that they feel comfortable utilizing. I encourage them to listen to others but to be prepared for epic successes and failures when trialing out new tools. I also encourage them to reassess their toolbox continually, for the phrases that worked for them in one part of their career will likely grow stale or become ineffectual for them over time.
My communication toolbox includes the following (note that my mentor is in full agreement that the dramatic sigh has no place in my toolbox!).
1. I am a fighter and will fight alongside you, but we need to make sure we are fighting for the right thing. Let’s talk about what equals the good fight these days.
2. I am worried …
3. I have been thinking about your child a lot and I am fearful that we have some hard choices to make together today.
4. Well, this stinks.
5. I am so frustrated for you.
6. I cannot promise you a crystal ball, but I promise you my honesty.
None of this work comes easy. It is emotionally draining to have difficult conversations, even with a communication toolbox at hand. We as physicians also experience grief (p. 213) when a patient dies, and so we have our own grief work to attend to. Grief work is the process one must complete in order to resolve grief. Created as a concept by psychiatrist Erich Lindemann, it suggests that one must actively work toward resolving one’s grief rather than passively experience it. While there many books written on the topic that are outside the scope of this article, I do encourage readers to create a grief plan that incorporates, at a minimum, debriefing after an event and creating an identified self-care plan.
At each hospital I have worked, I have been asked to participate in the creation of a formalized debriefing program for employees. The discussion typically reveals that prior attempts have been made but have faltered secondary to poor participation. This is not unusual in my experience. There is also ongoing debate regarding the effectiveness of formalized debriefings and even the suggestion that they may cause more harm than good, for they may disrupt the natural grieving process that is required to maximize recovery (Bledsoe, 2003). Because of this, I encourage institutions to await the creation of a systemwide debriefing program until more is known.
For individuals, however, I do encourage finding some way to debrief, especially if one recognizes signs of acute stress disorder. This may involve seeking out a mental health professional or having a cup of coffee with a close colleague to discuss the events. It may be a simple acknowledgement of “Whoa, that was a rough one,” with the person who accompanied and then no further acknowledgement. Note that I encourage people to always have a fellow health-care provider accompany them when giving difficult news. They then have someone who can review the meeting with them and assess if it went as well or as poor as the physician suspected. It also means companionship. Even if it is never verbally acknowledged, having someone in the foxhole with us means we will always have a sense of unity when we encounter them in the future. Through this, the loneliness that can accompany this difficult work may dissipate.
I present this article as a lecture to second-year medical students every year. When I get to this point in the discussion, I see the immediate rift in the audience: some welcome conversations on self-care, and others are leery of it, for they have visions of having to overshare or emote, and neither resonates with their coping style. Readers may have the same response, but hear me out!
Self-care is a very idiosyncratic, malleable technique. Do not assume that it must be meditation or incantations and then disregard it if that is not appealing to you. Rather, each person needs to find out what refills his or her gas tank at the end of an emotionally draining day. Next, identify it and distinguish it as part of a self-care plan and utilize the (p. 214) activity only when actively seeking self-care. I find this to be of the greatest importance; otherwise, its impact gets lost in the fast-paced lives we all lead. Also, people must complete a self-care plan each and every time they identify having had a taxing, emotional day. Some examples of self-care elements I have encountered are
1. Playing a specific song only when having an identified need for self-care
2. Drinking a cup of tea out of a particular cup reserved for self-care events
3. Going to the gym and completing a particular workout reserved for self-care days
4. Going to a place of worship during off hours with the sole intention of self-care, not to complete a duty to attend
5. Playing a particular game with one’s children
6. Meeting girlfriends for dinner with a publicly announced need for self-care
Not all of these will resonate with all readers. Each person needs to find his or her equivalent. The most important part is to establish the tradition and be true to it.
When I was a fellow, I met a beautiful, sixteen-year-old girl with an equally beautiful personality. She did not walk down the hallway in the oncology outpatient clinic so much as she appeared to float down it as she giggled, smiled, and engaged with everyone she met along the way. When she was in the hallway, multiple exam room doors would fly open by excited staff and fellow patients who wanted to be acknowledged by her. I was equally infatuated by her. She was an extraordinary girl with an extraordinary gift, but she was also a patient with a terminal diagnosis, which made knowing her a gut-wrenching experience. She was also very intelligent and courageous, so she asked questions like “What is it like to die? What will my younger brother witness as I lay dying?” Most stressful to me, she relayed that she had befriended another patient of mine, also an adolescent girl with terminal cancer. She told me they would stay up for hours at night discussing their impending death over the phone, but she never told me the details of those discussions. To this day I cannot determine if that omission is a blessing or a curse, for I have never been able to shake the image of the two of them sitting up in their beds, in the dark, on the phone looking terrified. I do not even know if they were terrified, but that is the image I retained for a long time, and it negatively impacted my grieving for I felt that I should have been able to better help this vivacious, intelligent, brave girl.
My team of mentors encouraged me to attend her funeral as part of my grief work. It seemed like sound advice. However, I was ill prepared for the throngs of sobbing teenagers that barricaded the entrance to the church and even less prepared for the panicked parents of these teenagers who had no idea how to comfort their children. I felt powerless and disoriented. In the hospital, we have crowd control by virtue of the size of the room. We also have rules and policies. And it is true that I have a sense of control in my domain that I woefully lack once I leave a hospital. All these realizations and emotions came crashing onto me as I sat trapped in a pew for an hour and a half long service. After this encounter, I took time to process all of my feelings from that day. In the end, I realized that my self-care plan needed to include not attending funerals. Now I go to (p. 215) viewing hours only, and, even then, I attend just as it starts because fewer people are typically present. For me, this has been an effective self-care strategy because it allows me to acknowledge the family’s loss but also gives me a small space to say my own good-byes and begin my grief work.
My intentions in this article were to impart whatever pearls about grief and dying I have acquired through my training and career as a palliative care and hospice physician. I restate that I do not assume to have a perfect or singular solution that helps all. However, I do hope that readers now have something to consider: either about themselves, the grieving process, or how to engage with a terminal patient. I also hope that they strongly consider retaining my greatest pearl, which is authenticity. Authenticity allows us to partner with patients, better see our own blind spots, and identify our baggage, expectations, and grief work to best assist our patients.
Bledsoe, B. E. 2003. “Critical incident stress management: benefit or risk for emergency services?” Prehospital Emergency Care 2: 272–279.Find this resource:
Finlay, I., and D. Dallimore. 1991. “Your child is dead.” British Medical Journal 302: 1524–1525.Find this resource: