Meet Our Team
Q&A with Dr. Spandana Rayala
Dr. Spandana Rayala is the Associate Director of our Sunflower Children’s Network and the Assistant Program Director Fellowships for TWCC.
Dr. Rayala is a palliative care consultant at Kuwait Association for the Care of Children in Hospital and Bayt Abdullah Children's Hospice. She is from Hyderabad, India and did her pediatric palliative care fellowship at MNJ Institute supported by TWCC starting in 2016.
What has been your association with Two Worlds Cancer Collaboration and what is your role today?
I'm a pediatric palliative care specialist currently based in Kuwait. I was born and brought up in Hyderabad, India. My association with TWCC started in 2016 as a pediatric palliative care fellow supported by them in Hyderabad.
After my fellowship and working as a palliative care consultant, I volunteered as the Education Lead for the Sunflower Children’s Network (SCN) the pediatric palliative care program with TWCC.
I would like to say that it's important to me that I give my time, energy and the experiences I have received from TWCC back to the world. I get satisfaction, sense of community and belonging – they're family to me.
Today, I am excited to be the new Associate Director of the Sunflower Children’s Network and the Assistant Program Director Fellowships. At the same time, I am very aware of the high standards of the organization in terms of equity, encouragement and empowerment that inspired me in the first place.
How did you bridge from pediatrics to palliative care?
For me, those are two different parts. The first part, my daughter now almost nine was little back then, and I was looking for courses to do after I completed my residency. My father, with no medical background, went on Google and found this fellowship at the Mehdi Nawaz Jung Institute of Oncology and Regional Cancer Centre in Hyderabad, my hometown. He came with a printout of the program that TWCC offers in partnership there.
I had never heard about palliative care until then. Reading on the internet about it, I got the feeling that, ‘Oh, this is a 100 percent morbidity and mortality. I don't want to do this.’ Lucky for me, there was a one month course also offered and I ended up joining that thinking I will find out more. During the course, I got to meet the whole team from Hyderabad and see their work. And I was deeply moved. In the meanwhile, I was officially offered the opportunity to enroll in the Fellowship program.
The second part was to stay, finding value and meaning in trying to relieve the suffering even though it affects us. This was the hard part in some ways.
During this period of hesitation and doubt, I got to meet the bigger TWCC team. It connected me to a community who are not in it for themselves, but for something beyond. This association with TWCC has brought into my life some of my closest friends because of the work we do together.
It would be remiss of me not to mention Dr. Megan Doherty, Director of the Sunflower Children’s Network with whom I work most closely. I met her during my fellowship and she personally mentored, showed up for every meeting I requested, taught me that the more freely we give away our ideas, thoughts, encouragements and presentations the easier it is to see the change we want to see in the world.
And Dr Gayatri Palat, leading TWCC activities in India, with her ingenuity brought this vision of an inspiring palliative care program and made it a reality. I shall be forever grateful for the opportunity to train, work and develop the program with her.
What has been the impact of TWCC’s support for children’s palliative care?
TWCC filled a void where there was no pediatric palliative care. The children and families with pediatric palliative care needs were suffering with pain, struggling with health issues and the social impact these illnesses cause.
I think one thing TWCC has done extremely well in Hyderabad is that they started supporting the whole program themselves, picked the right persons to lead – leaders with a vision. The Hyderabad program has grown so much. The work has been impactful directly to so many the children and their families.
Then there is this whole other aspect of TWCC where they lead and promote education and training. When we try and share this, people keep asking about the direct impact for the children from their donations, which I understand, but what these education and training programs do is give a 100 fold, maybe even a 1000 fold impact to children and their families because training that one healthcare professional who is going to work with so many patients builds up the healthcare system.
When I joined MNJ and the Pain Relief and Palliative Care Society (a local NGO) TWCC had been involved with the adult and pediatric programs. As the Hyderabad program has become more and more sustainable with the constant efforts of Dr Gayatri Palat and the team, the focus has kept shifting and expanding. I think involving local communities over a period of time frees up TWCC funds to help with other programs, extend the program reach, and reach more patient populations.
In Hyderabad you were instrumental along with Dr. Gayatri Palat in developing the neonatal and pediatric palliative care team at Niloufer Hospital, what were the challenges?
The biggest challenge was convincing the staff that we are genuinely trying to help these families and children. They could not wrap their head around the concept of a team coming in and actively seeking and interacting with them every day to advocate for these ‘hopeless’ children.
To give you an idea of the sense of the numbers, we were receiving roughly 600 new patients every year from Niloufer Hospital. These are both neonatal (newborns) and pediatric patients.
What are your thoughts about online education and the Project ECHO model?
TWCC was probably the first to run a pediatric palliative care ECHO in the world. We started in 2018, before the COVID-19 pandemic, so we were out there and this was something that Dr. Megan Doherty initiated with a lot of conviction and we did it in collaboration with the Hyderabad team.
We had the infrastructure. TWCC funded the videoconference room [through a grant from The Rix Family Foundation]. And when we started, it was for the palliative care physicians to reach more children through those already working within the community. We then narrowed it down to palliative medicine residents, hoping the next generation gets more comfortable caring for children with serious illnesses.
And now we do then internationally. Last year we just completed the third ECHO series for Nepal. We did the first ECHO series with Bhutan and Sri Lanka too. This year we ran two series for the Eastern Mediterranean Region.
We customize the course based on the participant needs. It’s not that TWCC decides that Bhutan needs this, so we are going to do it, but rather we have collaborators from within Bhutan whom we meet multiple times. I think for the Sri Lanka ECHOs, we had seven or eight meetings hashing out the topics and expectations from these sessions.
Is there an experience with a patient or family that stays with you?
We saw this child in the emergency department because sometimes children don’t get moved to the ward or the ICU because there are no beds. He developed Meningoencephalitis [inflammation of the brain] and was developing hydrocephalus [increasing water in the brain] Without explaining to the family, the full implications of what a shunt would mean, the family was shifted to neurosurgery in a different hospital, underwent surgery, and came back to our hospital. The shunt didn’t work and he was just worsening. We saw the child at this stage. And the mother would share her thoughts with us while we were doing everything possible to make her child comfortable.
There were a 1000 things that I couldn't do anything about; none of us could do anything about. But a simple thing like explaining to the family about what the surgery would mean, what the outcome could be, and examining and touching the child even though the child is dying, would have made a difference.
I think this stuck with me, because a lot of the times when you are in that “treat, treat, treat” mode, you're trying to save your energies for the “salvageable” children, but we don't see the damage that we do to the family, to the parents, and to the child sometimes.
This stuck with me. This is physician induced trauma. This mother is going to have PTSD… because of us.
How did you become involved with The Sunflower – Pediatric Palliative Care Podcasts?
When I was in India, I would drive to work close to two hours in the morning and two hours in the evening, so podcasts were the way I would fill my time. They have opened my mind to ideas and concepts I would not have known otherwise. There are some other good pediatric palliative care podcasts out there and I have interviewed with one of them.
I had been thinking about it for some time. With Megan’s energy it became a reality. Now it is a community project. All our team members are contributing and it is turning out amazing. So I'm really excited.
How do you cope with the heavy emotions of your work?
Palliative care, irrespective of how well-intentioned you are and how much you want to give back, it gets heavy often seeing so much suffering. If organizations or institutions are not able to address the motivation of their employees and what their needs are, it's much more difficult to retain people in this field.
Initially, there was crying and pondering about philosophy of life. The meaning of life. Then again, I did not have peers that I could talk to. There were few pediatric palliative care physicians at that point. Over a period of time, trying different lenses to look at the suffering and the impact of work, the growing tribe of similar minded people within TWCC but also at Hyderabad made a huge difference. Also, prioritizing our self-care and breaks, and having the purpose as the centerpiece of our work has helped too.
I believe palliative care has taught me and made me a much more grateful person than I would've been otherwise.