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 A new institute at University Health Network and the University of Toronto will drive research into a controversial and neglected area of medicine: care for patients with life-threatening or terminal disease.

The Global Institute for Psychosocial, Palliative and End-of-Life Care brings together a diverse group of experts from across Toronto and around the world. It will generate research to underpin public policy and health systems, and to help clinicians deliver more effective and culturally sensitive care.

The institute will also educate a new generation of experts and researchers, as well as the public, on issues in palliative and end-of-life care.

“Many of the important questions regarding palliative and end-of-life care lie at the interface of medicine and society, and must be addressed from medical, psychological, ethical, legal, economic, cultural and other dimensions,” says Dr. Gary Rodin, head of psychosocial oncology and palliative care at Princess Margaret Cancer Centre, UHN, and a professor in the Department of Psychiatry at U of T, who will serve as director of the institute.

“The institute will help us build partnerships and collaborations locally and internationally in this emerging research field, to ensure that meaningful evidence informs health policy, clinical practice and public awareness,” says Rodin, who also holds the Harold and Shirley Lederman Chair in Psychosocial Oncology and Palliative Care at UHN and U of T. “Our goal is to ensure timely access to palliative and end-of-life care throughout the world.”

Palliative and end-of-life care is contentious in many cultures, and frequently less effective than it could be. In some countries, for example, people have a fear of opioids that can mean patients with advanced disease suffer excruciating pain. Different cultures disagree on whether to let a child know he or she has a terminal illness, and in some cases, even mentioning cancer can be taboo.

“Many people around the world still reach the end of life with unnecessary pain and other symptoms, and without the support required to maintain their dignity and the emotional well-being of their families,” says Dr. Catharine Whiteside, dean of the Faculty of Medicine and vice-provost, relations with health care institutions at U of T.

“Even in most developed nations, and when patients, families and physicians are in relative consensus on treatment options, the skills and resources necessary for the delivery of palliative and end-of-life care have not kept step with other areas of medicine,” says Whiteside.

The institute will set up research partnerships and exchanges with international institutions and deliver postgraduate research training. Members will come from several departments in U of T’s Faculty of Medicine, and from the Faculties of Nursing, Law, Social Work, Music, Pharmacy, and Arts and Science, as well as the Dalla Lana School of Public Health. The Princess Margaret Cancer Centre at UHN will be the administrative and academic hub for the institute.