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Journeying with Compassion: Advocacy in End-of-Life Care

Journeying with Compassion: Advocacy in End-of-Life Care | The Cancer Conclave 2024 | UHAPO

Journeying with Compassion: Advocacy in End-of-Life Care | The Cancer Conclave 2024 | UHAPO | CRSF

Thank you, Vivek Sharma, for giving me this opportunity. For these panel discussions, we have 4 panelists. Dr. K.V. Gangpathy CEO-Jascap Foundation, Dr. Biji S – Palliative Physician, Malabar Hospital, Kerala, Dr. Manali Patel – Palliative Care Physician, Mumbai, Dr. Smriti Khanna – Palliative Care, Hinduja Hospital, Mumbai. We have a diverse group of professionals who would speak on a common theme and we will touch on advocacy in several settings. 

So, I’ll start with Dr. Gangpathy Sir, 

Your advocacy work in India has been mainly through disseminating literature in various languages through Jascap books which is very popular in India and which has been a very successful initiative.

I come from a family where I sadly saw two close relatives suffer from cancer. I’m not suggesting we could have saved them, but I remember feeling we might have helped if we had known certain things to discuss with the doctor. Our main goal now is to help others by sharing what we’ve learned from our experiences. Over the past twenty years, the demand for our books on cancer has been increasing, showing a need for information. To meet this need, we started creating books to explain the basics of the disease. Now, we’re working hard to gather more information and reach a better understanding of cancer. We’re collaborating with the Brain Tumor Foundation and involving doctors to write a book specifically about brain tumors. We’re also gathering feedback from patient advocacy groups and patients who have read our books. From the feedback we’ve received, we can confidently say that four out of ten patients have found our cancer-related books helpful.

How do these adolescents cope with the challenges of treatment?

Adolescents dealing with cancer treatment often face special difficulties that can really affect their bodies, feelings, and social lives. To handle these problems, they need to be strong, get help, and have different kinds of care. We’re making something called Advocacy Through Literature Having Empowerment Potential. At Tata Memorial Hospital, we’ve also introduced QR codes for patients getting treated there. With just a of quick scan, they can watch our helpful videos about cancer. This has been getting a lot of praise from patients.

Connecting philanthropy to care

Philanthropy plays a crucial role in advancing cancer care by providing essential resources, funding research, supporting patients and families, and improving access to quality treatment and supportive services. You are effectively connecting philanthropy to cancer care among individuals, organizations, and communities to make a significant impact on the fight against cancer. 

Successes and challenges of philanthropy to care

We have made significant strides in supporting care for patients with bone cancer and acute lymphoblastic leukemia (ALL), but it also faces several challenges in addressing the complex needs of these patient populations.


  • Research Funding: Philanthropy has significantly contributed to funding research aimed at understanding the biology of bone cancer in adolescents and developing more effective treatment strategies. 
  • Supportive Care Programs: Philanthropic organizations have established supportive care programs tailored to the specific needs of adolescents with bone cancer. 
  • Access to Clinical Trials: Philanthropy helps facilitate access to clinical trials and experimental therapies for adolescents with bone cancer. 
  • Advocacy and Awareness: Philanthropic organizations raise awareness about the unique challenges faced by adolescents with bone cancer and advocate for policies and programs that prioritize their needs. 


  • Limited Funding: Despite significant contributions from philanthropy, funding for research and supportive care programs for adolescents with bone cancer remains limited compared to other cancer types. 
  • Psychosocial Needs: Adolescents with bone cancer often face significant psychosocial challenges, including anxiety, depression, body image issues, and social isolation. 
  • Survivorship Care: Long-term survivorship care is essential for adolescents with bone cancer, as they may experience late effects of treatment and require ongoing monitoring and support.
  • Access to Comprehensive Care: Adolescents with bone cancer often require multidisciplinary care involving orthopedic surgeons, medical oncologists, radiation oncologists, psychologists, social workers, and other specialists. 

My next question is to – Dr. Smriti Khanna – Palliative Care, Hinduja Hospital, Mumbai

How are you able to advocate for palliative care among colleagues with many different specialists?

As a palliative care specialist, advocating for palliative care among colleagues from various specialties is crucial to ensuring that patients with serious illnesses receive holistic and compassionate care.

Here are some strategies that I would employ to advocate for palliative care within a multidisciplinary team –

  • Education and Training: I would provide education and training sessions to colleagues from different specialties to increase their understanding of palliative care principles, goals, and benefits. 
  • Case-Based Discussions: I would facilitate case-based discussions with colleagues to illustrate the role of palliative care in complex patient cases. By sharing success stories and demonstrating how palliative care interventions can complement existing treatments and improve patient outcomes.
  • Collaborative Care Planning: I would emphasize the importance of collaborative care planning and encourage colleagues to involve palliative care specialists early in the treatment process for patients with serious illnesses. 
  • Evidence-Based Practice: I would provide colleagues with evidence-based resources and guidelines on palliative care best practices to inform their clinical decision-making. 
  • Quality Improvement Initiatives: I would collaborate with colleagues to develop and implement quality improvement initiatives aimed at enhancing the delivery of palliative care within our healthcare system.
  • Advocacy Efforts: I would advocate for increased resources and support for palliative care services within our healthcare system, including funding for staffing, training, and infrastructure. 

How do you overcome the barrier involving discussion about the disease among patients?

We overcome barriers by discussing cancer disease with patients which requires a multifaceted approach considering the emotional, psychological, and informational needs of the patient. Here are several strategies we use-

  • Build Trust
  • Open Communication
  • Provide Education
  • Address Emotional Needs
  • Involve Family and Caregivers
  • Normalize the Discussion
  • Respect Cultural and Personal Beliefs
  • Offer Continued Support

By employing these strategies we help overcome barriers to discussing cancer disease with patients by facilitating open, honest, and supportive communication throughout the cancer care continuum.

How would you be able to advocate for palliative care where value supersedes revenue in terms of Return on investment?

Advocating for palliative care where value supersedes revenue involves highlighting the holistic benefits of palliative care that extend beyond financial considerations. Here are some strategies we apply-

  • Emphasize Patient-Centered Outcomes
  • Cost-effectiveness
  • Value-Based Payment Models
  • Collaborative Care Models
  • Long-term benefits
  • Public Awareness Campaigns
  • Advocacy and Policy Reform
  • Research and Evidence-Based Practice

By employing these strategies, advocates can promote palliative care as a valuable and essential component of healthcare delivery, where the focus is on maximizing the well-being of patients and their families rather than maximizing revenue.

The next question is to  Dr. Biji S – Palliative Physician, Malabar Hospital, Kerala

How are you practically able to advocate for integrated palliative care among oncologists in public cancer institutes?

Advocating for integrated palliative care among oncologists in public cancer institutes involves a combination of education, collaboration, and policy advocacy. Here’s a practical approach we have adopted to achieve this –

  • Education and Training
  • Interdisciplinary Collaboration
  • Clinical Pathways and Guidelines
  • Quality Improvement Initiatives
  • Advocacy for Resources
  • Policy Advocacy
  • Patient and Caregiver Education
  • Research and Evaluation
  • Pain assessment

Are there any specific community advocacy groups for oncology that exist which help the patients and their families?

Neighborhood networking in palliative care, like IPC Kerala, involves an organization that works with all 14 districts in Kerala. They do this with the help of volunteers who provide care. We have 500 volunteers and 60 care units. They get training to give the best care possible.

Another group is called Canu District Cancer Control Consortium. Their main goal is to find cancer early and prevent it. Most members of this group are palliative care volunteers and cancer survivors. They help cancer patients with tasks like filling out forms, getting financial support, and finding services.

The next question is for the panelist,  Dr. Manali Patel – Palliative Care Physician, in Mumbai

As a critical care physician are you able to advocate with your colleagues for appropriate care of the patients when ICU measures are unhelpful?

I understood about palliative care in 2018 and that’s when I started doing palliative care for my critically ill patients. They feel that death is defeat and patients are not able to accept that defeat. Here are some ways I can advocate with my colleagues in such situations –

  • Interdisciplinary Communication: Engage in open and honest communication with my colleagues, including other physicians, nurses, social workers, and ethicists, to discuss the patient’s condition, prognosis, and goals of care. Collaboratively assess the effectiveness of ICU measures and explore alternative care options that align with the patient’s wishes and values.
  • Shared Decision-Making: Facilitate shared decision-making discussions with the patient, their family, and the healthcare team to ensure that treatment decisions are informed by the patient’s preferences, values, and goals. Help clarify misunderstandings, address concerns, and guide the decision-making process towards a consensus that prioritizes the patient’s best interests.
  • Advance Care Planning: Advocate for advance care planning discussions to occur early in the patient’s ICU stay, ideally before they become critically ill. Encourage patients to express their preferences regarding life-sustaining treatments, goals of care, and end-of-life wishes, and ensure that these preferences are documented and honored throughout their care.
  • Palliative Care Consultation: Advocate for palliative care consultation for patients who have complex symptom burden, poor prognosis, or goals of care focused on comfort and quality of life. Collaborate with palliative care specialists to address the patient’s physical, emotional, and spiritual needs, and provide comprehensive supportive care to enhance their comfort and well-being.
  • Quality Improvement Initiatives: Participate in quality improvement initiatives aimed at optimizing end-of-life care in the ICU, including efforts to improve communication, advance care planning, symptom management, and support for patients and families facing difficult decisions.
  • Education and Training: Provide education and training to my colleagues on topics related to end-of-life care, communication skills, advanced care planning, and palliative care principles. Creating a culture of compassionate and respectful care that values the dignity, autonomy, and well-being of patients and their families, even when ICU measures are no longer beneficial.

So, what we understand today is advocacy can be done at many levels through literature philanthropy, private settings, community levels, and intensive care. 

I am grateful for interacting with you all on the most important topic of advocacy in end-of-life care.

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