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Thursday, July 30 • 1:40pm - 3:10pm
Psychosocial Care as a Human Rights Issue - Challenges and Opportunities

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The International Psycho-Oncology Society (IPOS) Human Rights Task Force has been working since 2008 to raise awareness and support within IPOS and the IPOS Federation for the relevance of Psychosocial Cancer Care as a Human Rights issue. We seek to advocate for this issue internationally and nationally through existing Human Rights laws, in a fashion similar to what has been done by the organized palliative care movement. In November 2014 at the World Congress of Psycho-oncology in Lisbon, Portugal, the IPOS Board endorsed the “Lisbon Declaration: Psychosocial Cancer Care as a Human Right”.  In this session we will discuss psychosocial care as a human rights issue, the challenges and opportunities in different contexts, and how to move forward a declaration towards its implementation into clinical practice globally.

Chair: Luzia Travado  PhD, IPOS President; Champalimaud Cancer Center, Lisbon, Portugal

Discussant: Michelle Fingeret PhD, APOS President; University of Texas MD Anderson Cancer Center, Houston TX, USA  

Speakers:

William Breitbart MD: 

The IPOS Lisbon Declaration of Psychosocial care as a Human Rights Issue

Dr. Breitbart, Chairman, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, is chair of the IPOS Human Rights Task Force. He will describe the details of the Lisbon Declaration and the plan for dissemination and creation of an international community of supporters from individuals, organizations and advocacy groups globally.

Andrea Patenaude, PhD:  Defining psychosocial care as a human right for children with cancer: Illustration of challenges at the extremes 
Dr. Patenaude, Director of Psychology Research and Clinical Services, Center for Cancer Genetics and Prevention, Dana-Farber Cancer Institute and Harvard Medical School, Boston MA USA, is member of IPOS Human Rights Task Force, will describe ongoing human rights challenges in Africa and worldwide facing children with cancer and their parents. 

In many parts of the world it remains standard to deny children with cancer the right to know what their diagnosis is, what the treatments are they will receive and what their current status and likely outcome of their cancer will be. Part of the imperative for children with cancer to receive concurrent psychosocial care involves their need to have a caring, informed, trusted adult with whom they can discuss their feelings and fears about being ill, having cancer and enduring cancer treatment and about possible separation from family members and peers. Beyond the right to accurate medical information there are many examples of challenges to the ethical care of children with cancer. In Kenya, there are repeated reports of the detention of children with cancer in hospital after they have completed treatment, often without the comforting presence of their parents or much attention from hospital staff, because their parents have been unable to pay the hospital bill. This represents an extreme denial of human rights to both children and parents. In more developed countries, less extreme but important ethical issues arise in the psychosocial care of children with cancer about how to define minimal, essential services which should be available to all children with cancer. We will discuss these ethical challenges for pediatric cancer patients and their family members and the importance of universal psychosocial care for children enduring the stresses of cancer. 

Lea Baider PhD: Cancer Care:  Human Rights within the Cultural and Religious Beliefs  of the Middle East 
Dr. Baider, is Full Professor Health Psychology, Director Psychosocial Department at Assuta Medical Center,Tel-Aviv, Israel. As a member of the IPOS Human Rights Task Force she will discuss specific Human Rights challenges for women in the Middle east with cancer and their ability to receive supportive cancer care. 

Human Rights ethics now face the increasingly relevant challenge of pursuing how to handle conflicts that are deeply embedded in diverse cultural and religious outlooks on life and death. Health care is rife with cultural differences and potential conflicts that must be considered in order to provide effective psychosocial care.. The most intimate events of life -  reproduction, birth and death - draw us into the health care system and expose the most fundamental attitudes, moral values and beliefs. Religion, and systems of beliefs also directly affect psychological and physical health, for they influence coping strategies, social and family behaviour, and health attitudes. As with the Middle East, many societies are becoming increasingly multi ethnic, and multicultural. The family system of beliefs and health rituals in the Muslim countries, may appear "unscientific" and contradictory in comparison to the "evidence-based" western medical care.  There is then, a risk of misunderstanding and conflict, particularly when Human Rights are totally ingrained with traditional norms of behaviour, and within the society traditional cultural and religious values. 

Luigi Grassi, MD: Psychosocial care as a Human Rights Issue Around the World: the IPOS Federation perspective 
 ***Daisuke Fujisawa MD PhD (Japan) will be presenting in place of Luigi Grassi MD

Psychological distress, anxiety and anguish, helplessness-hopelessness conditions and depression, difficulty in coping and adjustment affect at least 30% of cancer patients. Furthermore, psychosocial needs (including feeling of meaninglessness, lack of purpose, dependency, loss of social role functioning, feeling a burden to others) are common but, extremely  frequently, unexplored and unmet in cancer settings. These aspects are reported in all the phases of cancer, with particular reference to palliative care. The main consequence of this situation is a negative impact on quality life, on the sense of self and on the perception of one’s own dignity, as the whole of physical, psychological, social, and spiritual/ existential issues. Many of the statements related to human rights declaration in mental health, such as the right to be treated with dignity as a human being; the right of everyone to enjoy the highest attainable standard of physical and mental health; and the right to have to psychosocial  services and psychosocial intervention in the event of sickness, are also part of psychosocial oncology programs in many different parts of the world. One of the roles of the federation of psych-oncology societies is to help those countries where psychosocial oncology is less developed and psychosocial needs of cancer patients and their families not explored and/or not addressed.

Stephen R Connor PhD:  The Next Steps: Implementing Declarations into Practical Clinical Care Changes Globally- The Palliative Care WHO Experience 

Dr. Connor is Senior Fellow to Worldwide Hospice Palliative Care Alliance (WHPCA), and Member of the new WHO Ad Hoc Advisory Group on Palliative and Long Term Care. He has worked in hospice and palliative care for the past 38 years as a licensed clinical psychologist, researcher, executive, advocate, consultant, educator, and author. He is also an international palliative care consultant to the (Soros) Open Society Foundations. 

Connor will describe the experience of the palliative care field in moving Human Rights advocacy from “Declarations” to practical clinical implementation globally. The session will draw parallels between the experience of the international palliative care community’s advocacy efforts to advance palliative care globally and the IPOS’s efforts to advance psychosocial cancer care as a human rights issue.

Like IPOS the WHPCA’s advocacy began with a Seoul declaration in 2005 calling access to palliative care a human right. The WHPCA emerged as an alliance of national and regional hospice and palliative care associations after the Seoul meeting of the Asia Pacific Hospice Network and was formalized as a UK charity in 2009. A series of global summits and further declarations on palliative care (including the EAPC/IAHPC Prague Charter “Palliative Care as a Human Right”) were held. Work began to create a stronger international voice for palliative care and WHPCA was admitted into official relations with WHO in 2012.

From 2011 to 2014 the global palliative care community, working with Human Rights Watch, pushed to have a stand-alone resolution brought before the World Health Assembly (WHA). In May of 2014 the WHA unanimously passed a resolution calling on member states to “Strengthen Palliative Care as a Component of Comprehensive Care Throughout the Life Course.” The resolution was based on a report from WHO that used the Global Atlas of Palliative Care at the End of Life, a joint WHO/WHPCA publication and calls on countries to use a public health approach to advancing palliative care in policy, education, medicines availability, and implementation. Implementation of the resolution has recently begun and will be described. 

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Thursday July 30, 2015 1:40pm - 3:10pm
Liberty Ballroom Meeting Level 4

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