Everyone dies; this we all share. Seventy percent of people die in hospitals (1). Every physician, from training onward, will participate in the care of dying patients. Balfour Mount (2), the father of Canadian palliative care, spoke to the challenge of healing dying patients, saying
I am not speaking of physical healing, a person can die healed; what I mean by ‘healing’ is a shift away from anguish and suffering, toward an experience of integrity, wholeness, and inner peace. The ultimate goal of healing is to enable us to be of greater service to others and to the global village of which we are temporary trustees.
It has become increasingly clear that “healing” dying patients is complex and extends much beyond treating symptoms to psychosocial, existential, and spiritual aspects.
It is important that we train psychiatrists in these aspects of caring for dying patients. Anxiety (3) and depression (4) are common in dying patients, but pervasive, less circumscribed concerns revolve around the experience of suffering and inherent psychosocial, existential, and spiritual distress (5). Much of a patient’s experience at the end of life revolves around nonphysical or existential variables, those that relate to one’s sense of meaning (5). For example, one study showed that physical variables, such as pain, factor least in patients’ will to live (6). Similarly, Chochinov and colleagues (7, 8) completed a qualitative study to examine, from patients’ perspectives, what constitutes dignity, a concept that is commonly introduced in end-of-life conversations and decisions. Three broad categories of concerns emerged, including illness-, dignity-, and social-related concerns.
There has been a paucity of research into the knowledge, skills, and attitudes at the core of providing end-of-life care. This research is crucial to inform curriculum development in an area which, in Canada, is now considered an important core competency for all physicians. Educating Future Physicians in Palliative End-of-Life Care (EFPPEC) is the national body charged with competency development for all trainees, ultimately to be reflected on licensing exams (9). Nationally, postgraduate end-of-life care competencies are also being developed for psychiatry. Educational practice must be informed by research if we are to help trainees meet such requirements.
Sullivan and colleagues (10) completed the first large study to assess the status of medical education in end-of-life care. Incorporating data generated from students, residents, and faculty, they found attitudes to be very favorable, but there were notable trainee-reported deficits in such areas as addressing patients’ thoughts and fears, addressing spiritual and cultural issues, managing one’s feelings about a patient’s death, and helping families with bereavement.
There has been no study to examine end-of-life care education from the perspective of trainees in psychiatry. In this study, we aimed to examine psychiatry trainees’ attitudes, perceived preparedness, previous experiences with death, and desired changes in education. Further, given our improving understanding of the experience of dying patients, including perspectives on dignity, we wanted to examine how psychiatry trainees conceptualized good, dignified care at the end of life.
This study was approved by the University of Toronto Health Sciences Research Ethics Board. The Department of Psychiatry at the University of Toronto is a large urban teaching center that trains one-quarter of Canada’s psychiatrists. Although there is a mandatory 1-month rotation in palliative medicine for all first-year residents, in which they function as palliative medicine consultants, this study focused on residents’ experiences of all undergraduate medical and residency training.
A 20-question survey was developed to elicit quantitative and qualitative, or narrative, responses, reflecting on all medical training to date. The quantitative portion was based in large part, with permission, on a survey previously published by Sullivan and colleagues (10). These questions, answered on a 4-point scale, addressed demographics, attitudes, perceived preparedness, and previous experience with dying patients. The qualitative portion was included to gather more descriptive responses and to address concepts that are not quantifiable, such as conceptualizations of dignity at the end of life, perceived preparedness, attitudes, experiences with death, and desired changes in education. The entire survey was pilot tested with 10 psychiatric residents outside of the University of Toronto setting; minor changes were made to the survey on the basis of feedback from the pilot participants, including clarification and length of questions.
One hundred sixteen psychiatric residents training in Toronto were invited by e-mail to participate in this study. As an incentive, participants were entered in a random drawing for the opportunity to win one of five $75 gift certificates for books. Formal informed consent was obtained, and responses were kept anonymous. Residents completed the survey online, using Survey Monkey (www.surveymonkey.com/).
Descriptive statistics were performed on the scalar data. Numerical values of 1 to 4 were assigned to each level of preparedness (1=“not at all” to 4=“very well”). For each competency, the mean level of preparedness was calculated. A single sample t test was performed on each mean to examine whether the competency mean score was significantly above or below 2.5 (the midpoint on the scale between prepared and unprepared).
Qualitative narrative data were coded for emergent themes using meaning condensation (11). Coding was completed iteratively using the constant comparative method by two independent coders until a final coding structure was agreed upon.
A total of 82 psychiatric residents volunteered to participate in this study, for a response rate of 71%. The participating residents, average age of 31 years, were evenly distributed over the five postgraduate training years (PGYs). Of the 82 participating residents, 45 were women (55%). Seventy-two residents (88%) had not completed a rotation in end-of-life care in medical school. However, 71 (87%) had, so far in residency, completed at least one rotation in end-of-life care.
Attitudes toward end-of-life care were very favorable. Seventy-five residents (91%) agreed it was important for all residents to receive training. Seventy-five residents (91%) agreed that psychological suffering can be as severe as physical suffering, while 70 (85%) agreed that it is possible to tell patients the truth about a terminal prognosis and still have them maintain hope. Only 12 residents (15%) reported that they had dreaded dealing with the emotional stress of family members/loved ones of a patient at the end of life.
Mean scores of preparedness in various competencies, with standard deviations, are presented in Table 1. Competencies that reached significance for preparedness included managing pain, recognizing opioid tolerance, discussing end-of-life decisions, talking about fears, and telling a patient that he or she is dying. Competencies that reached significance for lack of preparedness included addressing cultural and spiritual aspects, helping with reconciliation and saying goodbye, and responding to the request for physician-assisted suicide.
Sixty-one residents (74%) rated the quality of teaching in end-of-life care as good. While 50 (61%) reported learning a lot from palliative care physicians, only 10 (12%) said they learned a lot from psychiatrists, seven (9%) from nursing, and four (5%) from chaplaincy.
Only one resident believed that there was enough teaching in the area. Residents desired a more multidisciplinary learning context, including nursing and chaplaincy. Several senior residents perceived an atrophy of their skill since first-year residency and wanted more longitudinal exposure, including during senior rotations such as consultation-liaison and geriatrics. Areas cited for content improvement included existential concerns, depression, anxiety, family care, and ethical and legal aspects, such as the request for physician-assisted suicide, withdrawal of care, and code status. Spiritual, cultural, and physician self-care were also frequently cited. One resident said, “There seems to be a lot of focus on symptoms, such as dyspnea, pain, and nausea, but little focus on the psychological or existential aspects of the dying experience.”
Professional Experiences with Death
Residents reported some negative experiences of patients dying, including unpeaceful deaths, physical distress of patients, medical teams not knowing how to treat distress, and families being conflicted over decision making about their loved one. Only one resident noted the comfort provided by nurses, despite them being an integral part of the team. One resident recalled, as a medical student, “seeing a patient die on the medical ward from lung cancer. He was short of breath the entire time and nobody seemed to know how to treat it, other than give oxygen. I remember thinking that it was a terrible way to die.”
There were also recollections of patients being resilient and inspiring, including one resident recalling, “caring for a single mother with stage 4 breast cancer who had four young children. She had an ethereal acceptance of the terminal illness, but was willing to take whatever treatment necessary to lengthen her quality of life with her children. … She was inspirational.”
Impact of Personal Experiences With the Dying
Several people found personal experiences with the dying to be opportunities for personal growth. One resident said, “This experience increased my commitment to supporting my patients and their families to not only cope but also find growth and opportunity in dealing with the physical, emotional, and social strain which comes with caring for a dying loved one.”
Residents believed that their experiences with the death of a loved one made them more sensitive to the humanity of the patient, more attuned to patients’ wishes, and more able to accept death. One described, “It made me realize how vulnerable we are to medical professionals, and how insensitive and objectifying caregivers can sometimes be. Humbling to realize that I, too, may sometimes have been superficial and glib in the face of a deeply difficult experience my patients and their families have gone through.”
Conceptualizations of Good End-of-Life Care and Dignity
Qualitative data revealed that residents conceptualize the attributes of good end-of-life care as being embodied in the construct of dignified end-of-life care. Analysis revealed five major overarching themes as the constituents of dignity at the end-of-life: the mind, the body, the soul, relationships, and autonomy.
Residents expressed that attention to emotional needs is crucial at the end of life, including management of depression and anxiety. They identified the importance of demonstrating compassion and empathy and inviting patients to voice their needs and fears. Additional dimensions evoked by residents included helping the patient to come to terms with dying, facilitating closure and a sense of a life well lived, saying goodbye to loved ones, and supporting the family through bereavement. For example, “A dignified patient is respected as a complete person with a lived past and current thoughts, feelings, and needs.”
Participants pointed to the importance of physical concerns, including pain, symptoms, and providing a comfortable care setting. Physical independence and control over activities of daily living were also thought to be important.
A significant portion of qualitative responses revolved around existential and spiritual concerns, including helping the patient find meaning in life and death, preserving pride and respect, fostering a sense of agency, and allowing the patient to die without shame. Several cited the importance of spiritual care and preservation of hope and fighting spirit. One resident described this as fostering “a death in which the person feels complete and satisfied and knowing his or her purpose is no longer to be part of the physical world, but to go on to the next journey, whatever that may be in his or her belief system or culture.”
Many residents said they believed that it was important for patients not to feel they are a burden to family and that family should be included in the dying process when desired by the patient. One said a patient “would want to feel that loved ones are cared for and that they have adequate support after their loved one dies.”
Relationships With the Health Care Team
While there were references to holistic care of the dying patient, only a few referred to a multidisciplinary team, including such disciplines as psychiatry, palliative care, nursing, social work, and chaplaincy. In contrast, many narratives centered around the physician’s role in providing dignified care. Such a physician would be honest, attentive, calm, and a good communicator. One described that a physician should “have an ability to tolerate the expression of negative affect and not … get tied up in his own grief and guilt.”
Many residents highlighted the importance of the preservation of a patient’s cognitive, functional, and decisional autonomy. One described the necessity of a “collaborative approach in choosing the circumstances of your death as much as possible, with or without tubes, level of sedation, and patient and family preference for home versus hospital.” Several said autonomy includes “being allowed to end one’s life when prognosis is dire.”
There was a strong sense that dignity at the end of life is an individual concept. One argued that “for different people, dignity will mean something different. For example, it might be important for one person to die at home, where another might not feel her dignity is taken away if she dies in hospital. For one person, being cleaned up after fecal incontinence by a child might feel like a loss of dignity, to another it will feel like love. The point is to have a sense of what the dying person feels is dignified, and to not make assumptions.”
One participant suggested that dignity is a “politicized” concept that may lead us to make assumptions: “The Phrase ‘Dying with Dignity’ is an ideology now. The phrase conjures up a literature with articles on everything from euthanasia to existential psychotherapy, which have little business at the bedside, especially at the moment of death. I prefer the simple, less encumbered question: what does dying with dignity mean to you?”
This is the first study to examine the state of end-of-life care education in psychiatry and how this education is experienced by psychiatric residents. With favorable attitudes and a conceptualization of dignified care that are very similar to those of patients, many residents did not feel competent in many areas they identified as important to patients. These findings are critical for curriculum development.
A central goal of this study was to examine how residents conceptualize good end-of-life care and dignity at the end of life. Understanding how well residents understand the patient experience is relevant to curriculum development. It is notable how well the psychiatric resident-derived conceptualization of dignity maps on to Chochinov’s patient-derived empirical model of dignity (8).
However, it is concerning that residents felt relatively unprepared in the existential, spiritual, and cultural aspects of patient care. That psychiatric residents felt most poorly prepared to respond to patient requests for physician-assisted suicide is especially concerning, given the relationship between the will to live and depression (6). Perhaps the results should not be surprising, given that the most commonly taught topic in end-of-life curricula in Canada is pain management, rather than managing mood disorders and practicing self-reflection (12).
Given that psychiatric residents in this study showed a strong sense of responsibility and obligation, portraying the burden of dignified care as being largely that of the physician, it is troubling that many did not believe that their education prepared them to manage their feelings about a patient’s death. It would seem that in the specific context of end-of-life care, trainees in our setting are not given the opportunity to debrief about clinical encounters. This is consistent with another study’s finding that medical trainees receive feedback about such encounters (10).
As many residents articulated, it may be that a junior rotation in palliative medicine, albeit a source of high-quality learning, does not fully prepare residents to provide clinically contextualized end-of-life care as a psychiatric consultant. It was striking that residents reported learning very little from psychiatrists, despite completing core rotations where dying patients are encountered, including consultation-liaison rotations. One might wonder if the shift toward biological psychiatry has rendered trainees less equipped to engage in the meaning of a patient’s unique experience of illness in general, and that of dying in particular.
Although this study was conducted in one residency program, it is an in-depth examination of the experience of psychiatric residents in the largest training program in North America, one which draws medical students from across Canada and internationally. Despite residents having, at minimum, a 1-month palliative medicine rotation, there were major perceived deficits across all training years. Although it is possible that a survey on end-of-life care might create an expectation of social desirability, thus skewing resident responses, it was notable that no one expressed the opinion that end-of-life care should not be part of psychiatry training. We recognize that some might argue that end-of-life care is not part of the competency set of a psychiatrist. However, the postgraduate psychiatry core competencies in end-of-life care being developed through Educating Future Physicians in Palliative End-of-Life Care make it clear that such training be mandatory for all psychiatric residents in Canada (9).
Assuming, then, that end-of-life care should be part of psychiatry education, the results of this study suggest end-of-life care education should be provided more longitudinally in various clinical contexts. Although a rotation in palliative medicine is good grounding, psychiatry trainees need opportunities to function in a consultant capacity in multidisciplinary teams that include spiritual care, nursing, and other physicians. This could include contexts such as consultation-liaison psychiatry, geriatric psychiatry, and psychotherapy. These are rich opportunities for learning not just about dying, but about helping patients with living.
In this study, residents demonstrated a significant capacity for reflection on experiences with dying and the impact on practice. However, in an area laden with much emotion, trainees caring for dying patients likely also need more formal opportunities to debrief and learn strategies for managing their reactions. This could begin with encouraging dialogue about the experience of caring for dying patients, an experience about which Susan Block (13) eloquently said “challenges the physician to be present in the face of suffering, to find ways of using one’s self therapeutically when medicine’s technical and curative limits have been exhausted.”
Improving end-of-life education requires careful attention to the hidden curriculum of medicine, one which all too often leads to a therapeutic nihilism that can spill into education. We argue that in psychiatry we should take a leadership role in advancing end-of-life care education. As much as curricula continue to emphasize pain and symptom management, we should also advocate education and practice that address the full experience of the patient, including psychological and existential aspects.
This study is the first to examine the perspective of psychiatry trainees on their education in end-of-life care. Although further research is needed to replicate these findings in other settings, the results suggest that education is not currently preparing psychiatrists to feel competent in many of the aspects that both trainees and patients agree are important.
Indeed, as Nancy Andreason (14) said, “Because our minds create our humanity, our specialty cares for illnesses that affect the core of our existence.” As psychiatrists, we must develop expertise in the nonphysical experience of dying patients, through research, curriculum development, and assessment that develop educational experiences to align with the experience and needs of patients, and trainees.
The authors would like to thank Drs. Susan Block and Amy Sullivan for their encouragement, feedback on the survey design, and permission to adapt a portion of their previously published survey. Tina Martimianakis was very helpful in assisting with the coding of the qualitative data. Finally, the authors thank Dr. Glen Regehr for his statistical expertise.
At the time of submission, the authors declared no competing interests.