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Background: Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the conne...

This chapter looks at the use of theatre as a tool for teaching self-awareness, the effects of bias, the understanding of complex human conditions, empathy, attunement, self-confidence, and decision-making in medical resident education. While more common in undergraduate medical programs and used across the health professions, theatre is emerging as a meaningful tool for education and research in the resident experience. The chapter is set within a performance studies paradigm that includes current understanding of the neuroscientific effect of theater on the body and in relationship, information that provides an explanation of how and why theater is an effective educational tool. It includes a brief literature review and examines four different projects that reflect the ways that theater is being used with Canadian residents in programs across the country.

Background: Ed's Story: The Dragon Chronicles is a verbatim play based on the journal of a 16-year-old with advanced cancer and transcripts from 25 interviews conducted after his death with his family, friends and health care team. After cross-country performances directed at health professionals and the general public, a viewing was incorporated into core undergraduate medical curriculum at our institution. We collected and compared responses of trainees who viewed the play voluntarily in extra-curricular settings and those who viewed a mandatory curriculum performance. Methods: Trainees completed confidential, online surveys within one year of viewing. A total of 46 trainees from five Canadian medical schools completed surveys after voluntary extra-curricular viewings (60.9% female, 39.1% male, mean age 26.2 ± 3.2 years). Of 84 eligible second-year medical students, 60 students completed surveys after mandatory curricular viewing (68.3% female, 31.7% male, mean age 26.0 ± 2.9 years, response rate 71.4%)...

Translation of curriculum materials to digital formats has become increasingly common. Medical humanities, typically reliant on human interaction to generate emotional impact, represents an interesting means to study engagement with digitised content. While technology-enhanced learning may provide opportunities to integrate humanities into curricula, redesigning sessions for digital use can be resource intensive and ‘requires consideration of the affordances’ of different media.1 As previously reported in BMJ Medical Humanities , guidance for this process—beyond simply, ‘digitising existing content’—remains limited.1 We present a five year educational case study that outlines our successes and struggles with digitising a medical humanities session for undergraduate medical education. Our model uses, Ed’s Story: the Dragon Chronicles, a verbatim play based exclusively on the journal of a 16 year-old boy with terminal cancer, and 25 interviews conducted after his death with his family, friends and interdisciplinary healthcare team.2 We have described the play’s development and initial curriculum integration elsewhere.2 Concepts of autonomy, interprofessionalism, end of life care, and moral distress were introduced to second year medical students with the play during an oncology block in lieu of a lecture. The session met objectives outlined for both the oncology unit and a longitudinal professional competencies curriculum. A mandatory live viewing (at a theatre venue outside the classroom) received positive feedback.2 To address feasibility challenges, including delivery to distributed sites, subsequent annual sessions employed a digital video disc (DVD.) The DVD was filmed at live performances with audiences present and used multiple camera angles; however, performances and staging were not altered. The in-classroom DVD and postperformance discussions were facilitated by technology-enhanced lecture theatres. Feedback was collected with Research Ethics Board approval using anonymous, web-based …

The field of arts and health is rapidly gaining momentum in Canada despite the challenges of integration across a vast geography, two official languages and multiple interdisciplinary cultures. Although the field is young, there is a solid foundation of innovative work and great enthusiasm on the part of diverse practitioners about the field's salience and impact. This article provides an overview of the arts and health in Canada and considers work that spans health policy, healthcare practice, individual and community health promotion, health professional education and arts-based health research. A final section offers reflections and recommendations on arts and health in Canada. We provide an online appendix through the journal's website that refers the interested reader to Canadian programs, resources, networks and other materials on the arts and health.

Cystic fibrosis (CF) has been transformed from a fatal diagnosis in infancy to a chronic disease of children and young adults. Symptom patterns and disease burden in CF may be shifting to reflect the relatively healthier, older population with the disease. Self-management of symptoms is a hallmark of chronic illness, and yet we do not have a good understanding of how CF patients monitor or manage their symptoms. Children and adults were recruited through clinics in three Canadian provinces. Questionnaires with open-ended and close-ended questions in English and French, designed to assess the frequency, severity, and self-management of pain, breathlessness, and cough, were mailed to all the eligible participants. One hundred twenty-three respondents completed the survey, for a response rate of 64%. Eighty-four percent (103 of 123) of participants reported having pain. They reported an average of 2.1 locations of pain, with headache and abdominal pain most frequently described. Sixty-four percent (76 of 123) of participants reported having breathlessness, and 83% (99 of 123) of participants reported experiencing cough. Sixty-three percent (62 of 99) of participants with cough reported that cough always or sometimes interfered with their sleep. A variety of pharmacological and nonpharmacological treatments were used to manage symptoms. Pain and dyspnea are more common than suspected and a wide variety of pharmacological and nonpharmacological measures are used to treat symptoms. Cough is difficult to assess, but disturbed sleep may be an indicator of cough severity and an important symptom to consider when evaluating the overall burden of illness in those with CF.

Pain management in the context of pediatric palliative care can be challenging. The present article reviews, through a case-based presentation, the nonpharmacological and pharmacological methods used to ensure adequate pain control in children facing end of life. Details on the impressive range of opioid dosages required and routes of administration are highlighted from published literature and clinical experience. Where available, evidence-based recommendations are provided. Potential side effects of pain medication and barriers to good pain control are discussed. Novel analgesics and innovative delivery methods are presented as future tools enhancing pain relief at the end of life. Some challenges to ethically grounded research in this important context of care are reviewed.

Purpose The aims of this study were to map the problems and needs of children with cancer and their families with regard to possible psychosocial interventions, and to do an acceptability study of different ways to provide support. Methods The authors performed a cross-sectional structured telephone interview with 56 parents of children with cancer and 13 adolescents from these families. On 0 to 10 analog scales, parents and adolescents rated the importance of different needs, how these needs had been met, the acceptability of different ways of providing supportive interventions, how often these ways had been used, and comfort using them. Results Parents' mean rating of importance of information needs was 9.42, peer social support 7.84, and self-management therapy 9.21. The ratings of how well these needs had been met were 8.05, 5.30, and 7.13, respectively. Both parents and adolescents ranked getting information written on paper highest, preferred to communicate in a face-to-face support group for peer social support, and preferred a therapist for self-management therapy. The comfort ratings for using different ways to provide the interventions were all high, as was access; 89% of families had computers in their homes, 76% had Internet access. Conclusions The needs for information, peer social support, and self-management therapy are all high. There is still room to meet these needs better. Using paper-based, telephone, computer CD, or an interactive Web-based intervention package all seem to be acceptable and accessible ways to meet the needs and might reduce the risk of families developing psychosocial problems.

It has been some 20 years since I started working in paediatric palliative care. What propelled me into this field was, paradoxically, the exposure during my training to tragic instances involving individuals with critical illness and at the end of life. It was not the fact that these people were up against great sadness; it was that the sorrow they were facing was compounded by poorly managed pain, inadequately addressed symptoms and discommunication. It was not that the clinicians were not caring; they were ill equipped. I was left with a profound sense that we had failed these individuals, their families and the many staff who bore witness to the suffering. Dr Gerri Frager I believe as physicians, when we feel that we have failed the patient, we tend to frame it in the context of not having been able to cure them of their illness, excise the tumour or treat their infection. In the setting of failing to fix the disease process, we tend not to consider other ways we may fail those we are charged to care for. Thinking about those times, I remember the expectant mother with an absent fetal heartbeat, in advanced labour. Much like every patient I have ever known, she sensed something was terribly wrong. At her husband’s and obstetrician’s insistence, we cloaked her in silence and further isolated her in fear. I remember a savvy young woman with a massive and aggressive abdominal cancer. Her surgeon spoke to her about a ‘mass’, never describing or explaining what she was living with, despite her repeated questions. Too many times, even as recent as the days abutting my recent retirement, I would try to dispel frightening misperceptions among my colleagues, patients and family members. Treating pain or breathlessness was proposed as a choice that would help relieve the symptom but draw them closer to death. This barrier to appropriate pain and symptom management continues, despite well-documented studies that refute this association. Misconceptions abound regarding foregoing potentially life-sustaining interventions, euthanasia, pain and symptom management, and assisted suicide. I despair that even after 20 years of practice, so much confusion relating to care at the end-of-life still exists. So, after 20 years of working in paediatric palliative care, what would I like to transfer from my head and heart to yours? I have great respect for mining for evidence. Fear and misconceptions can propel us in unhelpful directions. I believe there is no better way to work than combining evidence with trusting your gut. If something doesn’t feel right – listen to it. Find out why. Talk it over with somebody. Even if not in geographical proximity to a colleague with expertise in the area, these days of great technological capacity enable us to reach across oceans and over mountains for the help we need. This work can be very difficult. You are, however, not alone. I have had wonderful opportunities to present in Israel, Finland, across Canada, the United States, Europe and Australia. Regardless of location, uniqueness of culture or institution, what I have come to truly understand is that what people wrestle with most is ubiquitous. It may feel that the ethical challenges you face or the way you feel personally as a result of your professional care is unique to you. I can tell you this is not the case. I have learned that everyone feels challenged in similar ways and under similar circumstances. It is, however, not enough for me to tell you this. You must find out for yourself that by sharing your distress with another, you will feel less alone and may be surprised at the relief this can bring. I have learned the great value of working as part of a team. I was a nurse for nine years before I entered medicine. This background benefited me greatly in my career as a physician. We could all learn so much from one another by making the space and time to be present for one another. It is interesting that our multidisciplinary colleagues are sometimes referred to as ‘allied’ health professionals. They truly are our allies and it is important that we both recognize and acknowledge this. Many people ask how I have been able to do the work that I have done. Basically, my approach is to not wrestle with the gods. I don’t try to make sense of what is nonsensical. I don’t try to rationalize why this is happening to an innocent infant/child/youth. Where I find comfort is to be able to provide comfort. To be able to ensure that the child and family and the staff who care for them feel that they are as well cared for as is humanly possible and that they are well supported through a most difficult time. I also realize that this is not my loss but that it, unfortunately, is theirs. At one point in my clinical work, I faced a particularly difficult time caring for two adolescents. Both of these individuals were vibrant souls, the kind of people you knew would have grown up to do great things, given the chance. One of the teenagers was at the hospital for many months and the other was cared for in their home. It was a very labour-intensive and physically demanding time, with many nights being up on call. Their care was also very challenging, requiring profoundly complex pain and symptom management. The sense of injustice hit me greater and harder then I had felt in a very long time. I became physically and emotionally exhausted. However, I did not take time or make the space for myself. I did not consider how this care was impacting me. It was not until many months later that I carved out some time to reflect on my work and how I felt about continuing with it. I went away for a week-long retreat, talking over the challenges of work with others in a group format. It was life-changing. I was able to return to work recovered, restored and renewed. That said, I don’t recommend self-care in intense blocks like this. Reflective practice and self-care should be something that is part of one’s ongoing routine, similar to keeping up to date with attending conferences and reading journals. Of everything that can bring relief or generate more distress, I believe that communication may have the greatest impact. I have found that unique approaches can provide unique solutions. I believe greater ease and depth of expression can be facilitated by integrating the arts with communication. I was sharing in the care of Donald, a seven-and-a-half-year old boy with liver cancer, and attempting to assess his pain. Despite being verbal and developmentally intact (in fact, he was precocious), Donald absolutely refused to talk with me. It wasn’t until I started bringing in pictures of animals that we had any form of communication. From then on, it took off like a rocket! He would tell me about his pets at home and those he wished he could have. A conversation initially centred on animals expanded to where he would talk with me about his pain and whether he felt that he was getting enough relief from the medication, and what frightened him. Another instance demonstrating the value of integrating the arts in health care involved a mother who was spending intense blocks of time with her son during a protracted hospitalization, awaiting transfer for his bone marrow transplant. She spoke of missing nature, particularly flowers. I brought in pictures of flowers with which she covered the walls of his room, and she described feeling comforted by them. Another time, I prompted a family travelling to a distant centre for a bone marrow transplant to consider what picture they would bring along with them that represented ‘hope’. I have used visual arts (photographs, images, and collages) in reflective exercises with residents and staff to consider what they find difficult, and help them express what serves to ground and nurture them. I have always found that when I incorporate the arts, our subsequent discussions are much richer with a greater sense of connection. I wish each of you a rich and rewarding work life, and a happy, fulfilling personal life.

Models of providing care at the end of life and the most appropriate time for involving palliative care services are reviewed. The principles of management of pain and other symptoms are highlighted, including the issues related to providing sedation at the end of life. Pharmacologic guidelines are included for various aspects of pain and symptom management, as well as those specific to terminal sedation in children. A brief overview is included on anticipatory grief, bereavement follow-up, and staff support.

Background. This survey documents the strategies used by pain control physicians in the selection of opioid drugs and routes of administration in the management of inpatients referred to a cancer pain service. Methods. The following approaches were prospectively evaluated during the treatment of 100 consecutive inpatients: 1) the influence of the evaluation of the goals of care on decision making, 2) selection of opioid drugs, 3) indications for changing opioid drugs and the frequency with which this strategy is used, and 4) selection of route of administration. Results. Eighty of the 100 patients underwent a total of 182 changes in drug, route, or both drug and route before discharge or death. The major reasons for change were to improve the convenience of treatment regimen in the setting of adequate pain relief (31.4%), diminish side effects in the setting of controlled pain (25.0%), reduce the invasiveness of therapy in the setting of controlled pain (19.3%), and simultaneously improve pain control and reduce opioid toxicity (17.7%). When opioid toxicity was the reason for change, physicians changed the opioid drug in 71% of cases and the route in 29%. When convenience or invasiveness were targeted, the physicians changed the route in 61% of cases and the opioid in 39%. Forty-four patients required one or more change in the opioid, and 20 required 2 or more changes (range, 2-6 changes). At the time of discharge (n = 82), morphine was more commonly selected than hydromorphone or fentanyl (39% vs. 23% vs. 17%) and the routes of administration were oral (57%), transdermal (18%), intravenous (18%), subcutaneous (5%), and intraspinal (4%), Therapeutic changes were associated with improvement in physician-recorded pain intensity and a lower prevalence of cognitive impairment, hallucinations, nausea and vomiting, and myoclonus among patients who were discharged from the hospital. Conclusions. These data illustrate the application of strategies for selections of opioid drugs and their route of administration that are recommended in current guidelines for the management of cancer pain.

This chapter examines various case studies to show the desired skills, attitudes, and knowledge needed for palliative care involving children, whether they are being cared for as patients or as family members. It puts forth several issues, for example: What is known about involving a child in discussions about significant illness and death? What might a child understand about serious illness and death? What are the main elements of sharing information about serious illness and death with a child? What is helpful in supporting a child though a serious illness or death? What do we know about supporting a child's involvement at the time of death?

The pain experienced at the end of a child’s life is a complexity of physical, psychological, social, spiritual, and other factors. All factors in this matrix must be considered and treated to effect a successful system of care for a dying child. It is only in recent years that the special needs of the dying child and the child’s family have been recognized and specialized pediatric palliative care services developed. There is a small but evolving collective expertise that is developing clinical services to care for dying children. The knowledge base also is small but evolving. The collective knowledge base will grow more quickly with time if this endeavor becomes an international collaborative effort.

The medical management of end-of-life symptoms, and the psychosocial care of the dying and their families have not been a specific part of the curriculum for undergraduate medical students or residency training programs. The purpose of our research was to assess family medicine residents’ knowledge of and attitudes toward care of the dying. All entering (PGY1) and exiting (PGY2) residents of the Dalhousie University Family Medicine Residency Program were given a 50-item survey on end-of-life care. The survey contains two 25-item subscales concerning attitudes/opinions toward end-of-life care, and knowledge about care. Thirty-one of the 33 entering PGY1s (94%) and 26 of the 30 exiting PGY2s (86%) completed the surveys. Overall attitude scores were felt to be high among both groups, with little difference between them. Areas of concern regarding the adequacy of knowledge were found in relation to managing opioid drugs and the symptom of dyspnea. Interventions are now in development to address these issues in the residency program. In an era of subspecialties, the challenge of integrating these areas into the curriculum without creating rotations in specialist palliative care is an issue faced by most family medicine residency programs.

Objective. To identify the opportunities for and barriers to medical education about end-of-life (EOL) care in the pediatric setting. Methods. A working group of pediatric specialists and ethicists was convened at the National Consensus Conference on Medical Education for Care Near the End-of-Life sponsored by the Open Society Institute's Project Death in America and the Robert Wood Johnson Foundation. The charge to the working group was to consider the unique aspects of death in childhood, identify critical educational issues and effective instructional strategies, and recommend institutional changes needed to facilitate teaching about EOL care for children. Conclusions. Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planned and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians. Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and developmentally appropriate communication is most effective. 2) Sharing information with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-determination and best interests are central to the decision-making process. 4) Minimization of physical and emotional pain and other symptoms requires prompt recognition, careful assessment, and comprehensive treatment. 5) Developing partnerships with families supports them in their caregiving efforts. 6) The personal and professional challenges faced by providers of EOL care deserve to be addressed. These principles actually transcend patient age and can be used to inform medical education about the care of any terminally ill patient. Similarly, these principles of effective communication, ethical decision-making, and attention to the quality of life of patients, families, and providers apply to the care of all children regardless of diagnosis and prognosis. With this in mind, teaching about EOL care does not require a new and separate curriculum, but rather taking better advantage of the many teachable moments provided by caring for a dying patient.

More than three quarters of patients with advanced cancer experience chronic pain that is severe enough to warrant therapy with opioid drugs [1,2]. The most prevalent pain syndromes are disease related in adults and treatment related in children [3,4]. In adults with metastatic solid tumors, disease-related pains are usually persistent and often progressive, a pattern that reflects the limited availability of effective primary therapies for many of these tumors. In the pediatric population, the availability of effective antineoplastic therapies for the common tumors yields a pattern of disease-related pain that is typically characterized by transitory episodes [5].

To discuss the numerous psychological barriers to optimum pain relief in infants, children, and adolescents.The professional and scientific literature on pediatric pain was accessed by means of Psychlit and Medline searches. Our clinical experience with patients was also used.The potential barriers to optimum management were discussed in terms of cognitive and emotional developmental barriers, perceived lack of control, children's knowledge and attitudes, and characteristics of children.The psychological barriers to optimum pain relief are significant and attention to these barriers could lead to better pain management.

ing a difference in her comfort and survival. It was, and is, unbearable to me that I could not save her, could not protect her. At least, I could ensure that her medical care was carried out as she wished. My medical training made this easier for me than it might be for others. I would do just about anything to have my daughter alive. Nothing can change the relentless reality that she died. However, I am comforted, knowing that she died the death she wanted. I see that as wholly the outcome of mobilizing together to deal openly and honestly with what Liza was facing, of not leaving her alone with her dying. Not all of us will be that lucky.

We were most dismayed to read of the use of a placebo in a study of analgesia and the success rate of cannulation when a topical anesthetic was used on children requiring venipuncture.[1][1] It would seem unethical to expose any patient to unnecessary procedural pain when the efficacy of available