Palliative Care & Cancer: Bringing CALM to cancer patients around the world
By: Alaa Youssef
Patients with advanced cancer often find themselves struggling to achieve “double awareness”, that is, to manage physical symptoms, depression, fear, anxiety, and demoralization while also trying to spend their remaining lives meaningfully. For decades, palliative care was marginalized, poorly funded, and not recognized as part of the mainstream care, leading to a reduced quality of life in patients with advanced cancer. However, important new developments in palliative and supportive care have the potential to improve these patients’ quality of life.
Pioneering work at the Princess Margaret Hospital (PMH) under the leadership of Dr. Gary Rodin has led to impressive progress in the field of psychosocial and palliative medicine. Palliative care is now recognized as a vital component of care for patients with terminal conditions, such as late-stage cancer. Dr. Gary Rodin is the Head of the Department of Supportive Care, Director of the Global Institute of Psychosocial Palliative and End-of-Life Care (GIPPEC), and a Professor of Psychiatry at the University of Toronto. A recent interview with Dr. Rodin highlights his team’s significant contributions to the field.
Until recently, there were large gaps in research, knowledge, and clinical care in palliative medicine. Patients with advanced diseases often suffered unnecessarily, and might spend their final days in a hospital or emergency department instead of the comfort of their home. Dr. Rodin’s team began to study this problem through observational studies, which showed that patients with metastatic cancer face a set of predictable challenges that can be addressed. Further, Dr. Camilla Zimmerman, clinician-scientist and collaborator, has shown that patients who referred to palliative care earlier in the course of their illness had a better quality of life compared to those seen near the end of life.1 Evidence from these extensive studies has allowed us to develop targeted interventions such as CALM to address gaps in care for advanced cancer patients.
Managing Cancer and Living Meaningfully (CALM), is a brief evidence-based counselling intervention designed to help relieve psychosocial distress and promote psychological growth and development for these patients.2 The intervention is delivered by a highly trained multidisciplinary healthcare team over three to six semi-structured sessions. These sessions are tailored to address patients’ specific needs across four key domains: 1) symptom control and relationships with healthcare providers; 2) self-concept & personal relationships: helping patients maintain their sense of identity and self-esteem while restoring equilibrium in their relationships; 3) spiritual well-being or sense of meaning and purpose; and 4) future oriented concerns and planning for the end of life. According to Dr. Rodin, there are predictable challenges in each of these four key domains, but there was not a systematic approach to help patients face these challenges.
“We can compare this to mountain climbing. If you were to climb a high mountain, you would prepare, and we haven’t had a systematic approach to help people with metastatic cancer prepare in this way.” says Dr. Rodin. “We haven’t prepared and supported these patients enough to manage this journey.”
A cancer patient in the CALM intervention describes how CALM has impacted them, “I have to prepare myself for death, and [the therapist] is managing to [help me] because feeling that I’m able to grow as a person, makes me feel like I will be able to handle death in a peaceful way.3”
CALM’s systematic approach has been well-received both nationally and internationally, and the intervention has significantly impacted the well-being of patients with metastatic cancer. Dr. Rodin’s research has shown that patients with advanced cancer who received the CALM intervention were less depressed, better able to plan for the end-of–life, and better at communicating with their health care providers compared to those who did not receive the intervention. Qualitative research on CALM has highlighted the meaningfulness and importance of this intervention to patients, who often referred to it as a “reflective and safe” space for them to talk about their fears and wishes. Notably, CALM has had a global impact, as trials in Italy, Germany, and other parts of the world have replicated its effects.
Recently, Dr. Rodin’s team developed another intervention known as EASE (Emotional and Symptom Focused Engagement). This intervention focuses on patients with acute-onset diseases, such as acute myeloid leukemia (AML). This disease may be cured, but requires intensive treatment and has a high risk of mortality. These patients face a different set of challenges compared to patients with solid tumours. Patients with AML may not have had physical symptoms before being suddenly admitted to the hospital, but the intensive treatments they receive can cause distressing physical symptoms. These sudden changes can be highly distressing and many patients experience Post Traumatic Stress Disorder “PTSD”-like symptoms.
EASE is a combined psychosocial intervention that focuses on psychological support to manage anxiety and a palliative intervention that focuses on symptom control, starting early in the patient’s hospitalization. After demonstrating the feasibility and potential benefit of EASE in a pilot study, Dr. Rodin’s team will soon be launching a multi-centre trial in Toronto and Vancouver, which may expand to additional sites.
Internationally, there has been great interest in training healthcare professionals to administer CALM and other psychosocial interventions. Dr. Rodin’s team have trained healthcare providers in Asia, the Middle East, Europe and South America, including China, Japan, and more than 20 other countries around the world.
Dr. Rodin is also the director of a network called the Global Institute of Psychosocial and Palliative Care (GIPPEC). The GIPPEC and CALM training initiative initially developed independently, but both have grown through their synergy and common goal to improve quality of life for patients and families living with advanced disease. Efforts at GIPPEC are focused on building global networks in palliative and supportive care, with partnerships in China, Europe, and Africa. They have held workshops in many countries, training healthcare providers to deliver these interventions systematically and to engage more comfortably in sensitive conversations with their patients.
The GIPPEC is currently conducting studies in Kenya and Uganda, examining the quality of dying and death. This research is intended to deepen our understanding of how to improve the quality of death in these countries. Through these international collaborations, GIPPEC aims to generate meaningful evidence that advances clinical practice and enhances global access to psychological and palliative care for individuals with advanced and terminal diseases.
“We teach doctors how to do many things, but we haven’t paid enough attention to teaching pain and symptom control, communication, and how to provide emotional support,” says Dr. Rodin. “At one time, these skills were the core of medicine, but with the development of technology in modern medicine, they became neglected. We need to train health care providers in these skills, as we do with other important skills in medicine.”
According to Dr. Rodin, training health care providers in how to provide supportive care is an important goal in medical education. The integration of education in supportive care with that of other aspects of medicine, will help us to graduate health care providers with the skills to care for patients with complex needs, and to provide medical care that is humane and holistic.
Dr. Rodin wishes to acknowledge the Canadian Institutes of Health Research, the Canadian Cancer Society and the Princess Margaret Cancer Centre for their support of his research program.
- Zimmermann C, Swami N, Krzyzanowska M, Hannon B, Leighl N, Oza A, Moore M, Rydall A, Rodin G, Tannock I, Donner A, Lo C.Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. 2014;383(9930):1721-30.
- Lo C, Hales S, Jung J, Chiu A, Panday T, Rydall A, Nissim R, Malfitano C, Petricone-Westwood D, Zimmermann C, Rodin G.Managing Cancer And Living Meaningfully (CALM): phase 2 trial of a brief individual psychotherapy for patients with advanced cancer. Palliat Med. 2014;(3):234-42.
- Nissim R, Freeman E, Lo C, Zimmermann C, Gagliese L, Rydall A, Hales S, Rodin G.Managing Cancer and Living Meaningfully (CALM): a qualitative study of a brief individual psychotherapy for individuals with advanced cancer. Palliat Med. 2012;(5):713-21.
Anna Badner | IMS Magazine