Abstract
Abstract
Background:
While caring for critically ill and terminal patients can elicit grief symptoms in health care professionals, few studies have examined oncologists' grief over patient loss using a qualitative approach to inquiry.
Objectives:
To explore what makes patient loss difficult for oncologists and to explore the context in which these losses were occurring.
Method:
Twenty oncologists were interviewed at three oncology centers in Canada about their experiences of grief over patient loss. Exclusion criteria included never having lost a patient in their care and being unable to speak English. Data was analyzed using the grounded theory method.
Results:
Oncologists found patient loss particularly difficult for relational reasons including instances where they felt close to patients and their families, when they had a transference to the patient, when patients died young, when they had long-term patients, and when deaths were unexpected. Contextual reasons included when patients and their families were unprepared for death, had unrealistic expectations about cure, when excessive treatments were perceived to be used, when physicians were blamed for the loss, or when families were chaotic or had high needs. Findings further revealed that these losses were occurring within a physician culture that had a stigma around death and dying, viewed emotion as weakness, was focused on cure, and was gendered.
Conclusions:
Effective interventions to help oncologists cope with grief must identify the expectation gaps between physicians and patients when it comes to end-of-life care.
Introduction
Despite the evidence that grief over patient loss is a part of the oncology setting, few qualitative research studies have explored how oncologists deal with the grief of continually losing patients and more specifically, what makes some losses more difficult than others in the oncology context. The purpose of this analysis, which was part of a larger study examining oncologists' experiences of patient loss, was to explore what intensifies grief over patient loss for oncologists and the workplace context in which these losses occur.
Methods
Study design and participants
The grounded theory method was used. 17 Twenty oncologists were recruited and interviewed between November 2010 and July 2011 from three adult oncology centers in Ontario, Canada. Purposive sampling was used to target three groups of oncologists who were at different stages of their career trajectory (e.g., oncology fellows; junior oncologists with less than 10 years experience; and senior oncologists with more than 10 years experience, and who varied in their subspecialties, gender, and ethnicities [see Table 1 for participant demographics]). Exclusion criteria were the inability to speak English and never having had a patient die in their care.
Procedure
Research ethics board approvals were obtained at each participating health care center prior to beginning the study. Participants were approached by the oncologist co-investigators (MK, PM, and RT) at their respective study sites via email and were asked if they could be contacted to hear more about the study. If the oncologist agreed to be contacted, LG, the principal investigator, who is a psychologist and who did not work with or know any of the participants, followed up with a telephone call to describe the study and schedule an interview. An email was sent out to approximately 65 oncologists in the first wave at all three study sites. Fifteen oncologists responded to the recruitment email and agreed to be interviewed. After conducting and analyzing 15 interviews, participants who were not represented in the sample were targeted. An additional email was sent out to 5 oncologists and all 5 responded to the second email and were subsequently interviewed. During the initial contact with the oncologist, LG described the purpose of the project as well as the interview structure and time commitment. All interviews were conducted by LG, an experienced qualitative researcher, and informed consent and participants' agreement to the interview being audiorecorded were confirmed at the beginning of each interview. We used a semistructured interview guide with questions designed to encourage oncologists to discuss their experiences in depth. This interview guide was revised throughout the process of data collection and analysis. (See Appendix A.) All interviews were recorded and transcribed and all identifiable information was removed from the transcripts. Each transcript was assigned a participant numerical ID number.
Data analysis
We used the grounded theory method for coding and analyzing our data. 17 LG and a research assistant separately coded the first five transcripts; this was followed by several team discussions with the research team on the developing coding scheme to ensure consistency between coders and validity of the emerging findings. Data collection and analysis took place concurrently and line-by-line coding was used. The process involved separating sections of text that carried a uniform meaning into codes that were labeled descriptively to capture the meaning of the text. As the analysis continued, the descriptive codes were further distilled to capture the themes and subthemes emerging from the text.
The coding scheme was revised throughout the process of data analysis and was developed through ongoing discussions with members of the research team. Data collection stopped when the team determined that we had reached saturation and that no more new codes were created. NVivo 8 computer software was used to organize, code, and store the data.
Findings
In Table 2 we present the findings and outline the descriptive categories, the themes, subthemes, and supporting quotations that illustrate each finding from our analysis.
Difficult patient loss
The majority of oncologists in our study reported seeing between 40 and 90 patients a week. Many were experiencing several deaths in their practices, sometimes as many as three a week. When asked to reflect on what made patient death difficult, physicians talked about a number of relational factors including being close to the patients and their families; dealing with patients who had children; dealing with patients with whom physicians felt a ‘transference’ or an identification; dealing with long-term patients; and deaths that occurred unexpectedly. Contextual reasons were also named as making patient deaths challenging and thus exacerbating a physician's grief. By contextual reasons we mean factors that oncologists considered outside of their control and that did not pertain to their emotional or relational attachment to their patients. These included instances where the families and patients were unprepared or ‘in denial’ about what was happening; where patients were perceived to be given excessive treatments; when physicians were blamed for deaths or negligence; when families had unrealistic expectations; and/or when families were particularly chaotic or perceived as high-need.
Relational factors
Close patients and families
Oncologists reported having a harder time with patient loss when they were close to the deceased and their families. Patients who had an extended, close family and who the oncologists knew well made the loss more emotionally challenging, because the oncologists could see the impact of the loss on relatives and the patients' community.
Patient transference
Identification with the patient meant he or she either was close to the physician's own age, was from the same ethnic or religious background, had children who were the same age as the physician, or simply resembled someone the physician knew. In other instances the patient reminded them of their own family members (e.g., siblings or parents) and thus elicited a stronger attachment in the oncologist and subsequently more intense grief when the patient died. The more the oncologist was able to identify with the patient, the more he or she was able to empathize and imagine being in the patient's shoes.
Young patients
The deaths of younger patients were particularly emotionally draining and elicited feelings of grief in oncologists. There was a sense among physicians of injustice around these losses since they had not lived out their life goals yet.
Long-term relationships
Depending on their specialties, oncologists could follow patients and their families for as little as three months to as long as 25 years. The longer the patient was in the practice, the more oncologists got to know them and their families and this made the loss more difficult.
Unexpected deaths
When a patient was doing well and suddenly deteriorated or died unexpectedly, oncologists were taken off guard and experienced grief over that loss. The more hope there was for the patient's recovery, the harder the death was to accept, and the more grief they reported experiencing because they had expected that patient to survive and be cured, and were not anticipating this loss.
Contextual factors
In all of the contextual instances, the oncologist was experiencing grief because of factors considered to be outside his or her control, but that nonetheless were impacting the oncologist because the patient was suffering, which in turn caused the oncologist to suffer as well.
Unprepared families and patients
Families and patients that were not well informed or who did not know their family member was terminal were particularly hard patient deaths for the oncologists. These cases might involve a patient being referred to palliative care later than desirable because the family was reluctant to accept that the patient was dying.
Unrealistic expectations
As with families being unprepared, oncologists noted that when families and patients had unrealistic expectations for cure or were focused too much on keeping the patient alive, the patients suffered emotionally and physically, which in turn, caused stress for the oncologist and exacerbated his or her grief when that patient died.
Excessive treatments
When oncologists perceived that excessive treatments such as chemotherapy, clinical trials, or surgery that had no curative or palliative purpose were being offered to please the patient's family or to avoid the conversation on the patient's death, it made the loss harder. This was especially marked when oncologists worked on a health care team in the hospital setting and were not solely responsible for making treatment decisions for their patients. In other instances, oncologists spoke about feeling pressured by the family or the patient to provide more treatment than they felt was necessary because the patient or family did not want to give up active treatment.
Physician blame/negligence
In instances where oncologists felt that their patient's demise was due to another physician's negligence or in cases where the patients or their families had blamed the oncologist for their deterioration, the loss was described as particularly stressful and eliciting grief.
Chaotic, high-needs families
Another frequently named source of difficult patient loss had to do with the stability of the patient's family and how chaotic and/or needy family members were when they reached the patient's end of life.
Physician culture
Our analysis revealed that some of the factors that made patient loss difficult were the more elusive cultural undercurrents around what oncologists felt was acceptable to talk about, experience, and acknowledge in themselves. Several themes emerged in this category including stigma around death and dying, viewing affect as weakness, the “culture of cure,” and the gendered aspects of showing emotion in the oncology setting.
Stigma around death and dying
Throughout the interviews the oncologists noted that talking about death and dying is a stigma in society at large and that physicians are not extinct from this culture. Although they were immersed in and surrounded by death on a daily basis, they were not immune to the cultural messages about avoiding it, or their grief.
Affect as weakness
There was also a stigma in physician culture about emotion in general. Since showing emotion was considered weak, acknowledging or showing grief or experiencing sadness over patient loss was also stigmatized as unprofessional.
Culture of cure
As was the case for some of the patients and their families, some oncologists noted that the discourse around oncology is focused on cure as opposed to death, dying, and end-of-life care. This culture of cure or what one physician called “the death defying mode” was one in which the focus and the training was almost entirely on curing and controlling the disease, thereby making it hard to acknowledge one's grief when the patient died.
Gendered
This stigma around showing emotion in the workplace affected how oncologists thought about grief. Female oncologists reported that it was more acceptable for them to speak openly about their grief over patient loss in the workplace and at home. Male physicians reported that they were more likely to talk to female colleagues than male colleagues about their feelings, or that it was more common and acceptable for women to acknowledge and express their grief than for men, even if it was having an impact on both genders.
Discussion
In this study we explored the factors that make patient loss particularly difficulty for oncologists. Our participants spoke about both relational and contextual factors as exacerbating their grief when patients died. The analysis also identified a physician culture in which these losses were occurring that added another layer of complexity in dealing with grief over patient loss in the oncology setting. As reflected in the physicians' thoughtful quotations (Table 2), the relationships physicians developed with their patients and their families were braided with affection, attachment, and closeness; it was a benefit of the job, but also what made it challenging when patients died. The literature in the field supports the notion that the patient-physician relationship is one of the most gratifying aspects of practicing medicine but can also be the most stressful.18,19 This is particularly true for physicians who deal with patients at the end of life and has been associated with burnout in some oncologists.15,20
Some of these difficulties were caused by relational factors and had to do with identification with the patient, closeness with the families, and the nature of these long-term relationships.3,9,20–22 Others had to do with contextual reasons considered outside of the oncologists control such as unprepared families and patients, unrealistic expectations on the part of patients and families, physician blame, and high-needs families.3,9 Wallace and Lemaire 4 found that in a sample of 182 physicians, the emotional demands of their work including coping with suffering and death were reported as more detrimental to physician well-being than any other challenge they faced, including working long hours and juggling work-life demands. 4
What this research indicates in the context of our own is that emotional difficulties including grief are a part of the oncology setting, and yet these experiences are occurring within a culture that does not allow for free expression of this affect. As with North American culture where death, grief, and loss are stigmatized topics, 23 we found that there was also a reluctance to talk about death and dying in the oncology context, and physicians associated affect, especially grief, with weakness and vulnerability.24,25 The focus on cure within the culture of oncology and the norms around curbing emotions were salient and made speaking about grief and loss difficult for oncologists. While there has been some literature published on a physician's reluctance to seek help when facing emotional distress in general 18 and some literature on physicians' emotional reactions to patient death, 9 to our knowledge no other study has revealed the intricacies of physician culture within the oncology setting when it comes to the expression of grief over patient loss using a qualitative approach to inquiry.
Implications for practice
In one of the few papers on the inner life of physicians in coping with end of life, Meier and colleagues suggest that developing self-awareness and encouraging physicians to acknowledge their emotions when caring for patients at end of life is a key intervention to avoid unintended negative consequences for patients. 3 They further suggest that this self-awareness may be beneficial to physicians and can help with difficult aspects of the job such as professional loneliness, frustration, burnout, and depression. They lay out a four-step process that involves naming the feeling, accepting it as a normal emotion, reflecting on the possible consequences, and consulting with a trusted colleague about what steps to take next. 3
Similarly, Kearney and colleagues recommend “self-awareness to enhance self-care” in physicians. 26 As with Meier, Back, and Morrison, 3 they conclude, “self-awareness may both enhance self-care and satisfaction.” 26 Their proposed methods in developing self-awareness include mindfulness meditation, reflective writing exercises, and self-care. While these are promising entry points in dealing with the emotional stresses of oncologists, they do not go far enough. Our qualitative, contextual analysis revealed that the issue is more layered and complicated than it first appears.
Oncologists in our study did not suffer from a lack of self-awareness about their emotions. Indeed, they were not only able to identify their grief over patient loss, they were also able to name which factors caused them the most distress when it came to their grief, and furthermore, to situate these difficulties in the context of an emotionally constricting work culture. The issue was less about self-awareness than about the acceptability of expressing this grief in the workplace given the physician culture they were immersed in and socialized in. The question becomes, how and in what capacity do interventions get incorporated given the stigma around death and dying and the emotional and professional struggles the oncologists are facing in the context of patient loss?
Identifying the gaps
In designing effective interventions to help oncologists cope with their grief, we identified several gaps that need to be addressed. The first has to do with the expectation gaps of physicians and patients. From the physician side, we found that oncologists were experiencing grief over patient loss, but expressing this grief was stigmatized. Normalizing and acknowledging this grief as an expected part of the oncology setting, as opposed to a private burden on the oncologists, would be one important entry point.27,28 In addition to focusing on self-awareness, normalizing and acknowledging the affect as suggested by Meier and colleagues 3 would make room for these feelings as an expected part of the workplace and in the process make it more acceptable to speak these difficulties out loud.
While this study was not about the patient perspective, our analysis pointed to the fact that it would aid oncologists if patients and their families had realistic expectations about cure versus management of disease. As the physicians noted, the discourse around the culture of cancer is primary focused on cure. That, in combination with the cultural context around avoiding death, was making oncologists' work particularly challenging and may be the crossroads where oncologists were facing pressure to give what they perceived to be excessive treatments. For example, one qualitative study conducted in a general physician population corroborates our point about grief and “overtreatment.” In a sample of physicians the authors noted, “care of overtreated patients was frequently described in terms of conflict that interfered with emotional closure and resulted in long-lasting anger and frustration.” 9 As with our study, perceived “excessive treatment” deaths were particularly disturbing to the physicians and the conflict over treatment could occur within the medical team or between the medical team and the family members of the patient. 9
In closing, we note a few limitations to our study. First, we recognize that addressing and identifying the gaps is the theoretical first step to designing more practical interventions for oncologists coping with grief over patient loss. Further research on what types of interventions oncologists desire is needed.29–31 Second, we acknowledge that our sample was limited to academic cancer centers within the Canadian context. The physician culture described in our findings is situated within the larger North American cultural context in which death, dying, and grief is stigmatized, 23 and this had an effect on the way the physicians in our study understood (and allowed for) their own grief to be expressed. Further cross cultural research on the topic is highly desired and needed.
Footnotes
Acknowledgments
This work was supported by the Juravinski Cancer Centre Foundation, Hamilton, Ontario, Canada.
Author Disclosure Statement
The authors have declared no conflicts of interest.
