Young minds concerted for the right approach to palliative care!

Dr. Sanghamitra Bora, Guwahati

Recent years have brought a global recognition to palliative care as a human right to health and as an essential component of primary care available to all. Advocacy by civil society groups and stalwarts of the discipline, have greatly catapulted the awareness about the need for palliative care. Despite this, the access to palliative care service continues to be disproportionate at all levels. The role of our youth cannot be understated where changes in societal culture and perspective is mentioned. History is evidence to many significant breakthrough events brought about and led by the youth which has completely changed the perspective of a whole civilization. This ability to facilitate a behavioural change in the society at large makes our youth a powerful contingent of the community.

Adolescents and young adults have proven instrumental in generating awareness and improving public knowledge of palliative care in line with the discipline of palliative care. It is pleasantly surprising to note that a society’s young populace develops sufficient knowledge to accept palliative care as a priority health issue which is not only relevant to their lives, but also displays an understanding towards their role in developing palliative care to respond to the unprecedented needs in the community. Examples from countries like the UK and Australia in which advocacy by adolescents and young adults have carried forward and penetrated this message effectively within societies, have proved to be extremely useful in bringing about a demand to seek palliative care among the populations.

India is no exception. There are a few but important efforts taken by organizations and individuals with a tryst to educate the youth in this field to bring about a societal change. The SIPC – Students in Palliative Care from Pain and Palliative Care Society, Thrissur, Kerala, is an apt example. The association has seen one of the largest number of student involvement in the palliative care movement. Beginning from volunteering to training peer groups, and conducting international youth conferences, the SIPC has played a huge role in bringing about desired changes in the state. Many students who were actively involved in their college days with SIPC have now become pioneers to initiate palliative care movements in their places of work and carried forward these messages to different parts of the country, while also concurrently taking efforts to initiate Palliative care awareness generation.

In the north eastern state of Assam, Arujivn Healthcare Foundation has been working relentlessly to develop palliative care services and generate awareness within the community. Taking inspiration from SIPC, a Students’ Engagement Programme known as “Young Arujivn” has been rolled out by the organization. Partnering with schools of the city, the program is integrated with the school calendar to allow for students to take part in certified programs on volunteering and awareness generation on ‘Palliative and Supportive Care for the elderly and people with Serious Health-related Suffering’. “Young Arujivn” utilizes young minds and their creativity to spread awareness about the concept of palliative and supportive care. Methods such as art and craft, poetry, photography, street drama and skit, awareness walks, societal group programs, etc. are adopted to help young people focus on this area, while being guided by experienced facilitators to help them realize their creativity. While helping young people realize their natural leadership skills, facilitators bestow small but important interest generation tasks of engaging their peers into the project. Significant changes are anticipated in the long run.

Few important facts need consideration while introducing adolescents and young adults to the concept of palliative care. 1) to ensure that palliative care is not synonymous with end of life, and 2) that hope is the fulcrum between terminality and survival. While being cautious of the slippery slope of imbibing hopelessness into the young minds, the concept and essence of palliative care must not be told as the foretold story confined to death and dying. Nevertheless, compassionate care coupled with hope and acceptance of terminality should be the prime message while dealing with young people.

The future of bringing about a change also lies in understanding the power and potential of educational initiatives to influence attitudes and enable participation of young people in palliative care. Suggestions should be sought from students themselves for the education system to provide a platform where palliative care could be taught, spoken about and placed within a safe environment. Young adults must be allowed and encouraged to have a say in determining and communicating strategies to introduce palliative care into the education system. This shall surely lead to an integration of palliative care with community processes with palpable improvements in understanding and acceptance of palliative care in the near future.

About the Author: Dr Sanghamitra Bora is a Palliative Care Doctor from Guwahati, Assam, with a total of 14 years of experience as a full time palliative care doctor. She is an alumnus of Assam Medical College, Dibrugarh, with an MSc in Palliative Medicine from Cardiff University, UK.

She is currently working in Assam Cancer Care Foundation, a joint initiative of Government of Assam and Tata Trusts, as Lead-Palliative Care. She also volunteers for Arujivn Healthcare Foundation, a start-up section-8 company in Guwahati working towards establishing Home Healthcare Service with a palliative care approach.

Dr Bora is a National Trainer for National Health System Research Centre, Government of India, and a National Faculty for the Indian Association of Palliative Care.

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