Katie Leonard, director of pediatrics at Anchor Health, has been named a 2022 Future Leader by Hospice News.
Future Leaders are individuals nominated by their peers. Candidates must be a high-performing employee who is 40-years-old or younger, a passionate worker who knows how to put vision into action, and an advocate for seniors and the committed professionals who ensure their well-being.
The Future Leaders Awards program is brought to you in partnership with PointClickCare. The program is designed to recognize up-and-coming industry members who are shaping the next decade of senior housing, skilled nursing, home health, and hospice care.
Anchor Health provides hospice, home health and palliative care to adult and pediatric populations in California’s Bay Area and the surrounding northern and southern regions.
Leonard is a registered palliative care nurse who oversees Anchor Health’s pediatric program. Prior to this role, she served in various nursing positions in the hospice and palliative care field at Chemed Corp (NYSE: CHE) subsidiary VITAS Healthcare, Aveanna Healthcare (NASDAQ: AVAH), George Mark Children’s House, Stanford Children’s Health Neurology, and at the Contra Costa County Public Health Department in California.
Leanard recently sat down with Hospice News to discuss how reimbursement and access to pediatric palliative and hospice care is evolving.
What drew you to the pediatric palliative care space?
Since high school, I knew I wanted to be a pediatric nurse.
After a brief time in pediatric oncology, I wanted to branch outside of the hospital space. I worked as a case manager in pediatric neurology, and I learned so much about children with life-limiting and chronic conditions.
I found my passion for pediatric palliative and hospice care working at George Mark Children’s House, where I provided respite and end-of-life care to children with life-limiting diagnoses. I discovered that I had the most to offer as a nurse in pediatric palliative and hospice care. I discovered my passion for end-of-life care and realized my strengths in symptom management, facilitating end-of-life goals, and supporting families through this beautiful, but difficult process.
I wanted to become an expert in the field and went on to earn a master of science in palliative care from the University of Colorado Anschutz Medical Campus. That is how I got into palliative care.
What continues to draw me to pediatric palliative care every day is the approach to care. Palliative care is about getting to know the person and family and what is important to them. It is making sure that every decision made about their health care is in line with their hopes and dreams. It is discovering what drives people, what quality of life means to them, and tailoring their care to what is most important.
There is a freedom in practicing palliative care because the focus is on quality of life and relief of suffering. A palliative care provider gets to be creative and curious in order to individualize care.
Children are beautiful, and many people agree they live well. They live in the moment, they play, they forgive, and they have fun. Dying children are no different. They continue to play and give tremendous gifts and lessons to their families through to the end of their life and beyond.
How have you gotten to the position you’re in now, as the pediatric program director at Anchor Health?
Through my experience in the pediatric palliative care field and my capstone project to earn my master’s degree, I found that very few hospices accept pediatric patients. Those that do often have adult nurses caring for children with little pediatric-specific training or experience. Pediatric care is so specialized that hospitals have special units for caring for children. Why, then, would a child be taken care of by an adult hospice nurse?
I made it my career goal to develop a pediatric hospice program. I had no idea where I would start, but then I met Anchor Health CEO Cristi Keith, who was as determined as I was to have a pediatric program. We gathered resources, pediatric staff, and, after much preparation, accepted our first pediatric patient.
As the only pediatric hospice provider in two of the major San Francisco Bay Area counties, we grew. With this growth, I became the director of pediatrics. I coordinate with hospitals and the community, facilitate admissions, provide pediatric hospice care, and educate providers about what pediatric hospice entails and how it is different from adult hospice services. I am grateful to have found Anchor Health, and to be able to be a part of the growth and development of the pediatric hospice program.
What’s your biggest lesson learned since starting to work in this industry? If you could give advice to yourself looking back to your first day in the industry, what would it be and why?
My biggest lesson learned and advice to myself as a nurse new to pediatric end-of-life care would be to trust. Trust the child. Trust the process. There is magic in all of it.
It is easy to worry about how things might unfold, or be anxious when asked to predict end-of-life timing. But I have learned to trust the child. They go when it is the best time for everyone, with whoever needs to be there. Children wait, and there is nothing to do but trust them and trust the process.
What has changed the most since you came into the serious illness care industry?
One of the biggest changes has been the identification of serious illness. With genome sequencing, pediatric diseases previously unidentified are being named. Diseases are being diagnosed earlier, even in utero.
The family’s decision-making process begins earlier as well, as they decide what they want for their child, what quality of life means, and what is most important to them. These are palliative questions that accompany any serious illness diagnosis, and are worthy of attention and prioritization in care.
What do you foresee as being different about the industry looking ahead to 2023? What are you most optimistic about, as well as your biggest concerns?
As research evolves, there will be more children living with life-limiting diseases. I hope that the health care system is able to grow to meet their needs as well as shift to broaden the palliative and hospice realm.
I am hopeful that systems will change to allow pediatric palliative and hospice care to be more available and more sustainable. I hope that education about palliative care will continue to grow and be incorporated at every level of healthcare education.
I am concerned that as children live longer with more complex medical needs, services may not expand quickly enough to meet their needs and have their voices heard. I am also concerned that pediatrics will continue to be considered a life-saving specialty that is rarely considered at the hospice and palliative care table.
Even at the hospital level, providers and families alike struggle to use the term hospice and make the needed referrals, even when it would best serve the patient and families. It is my hope that the word ‘hospice’ will carry with it a sense of hope, comfort, and support, as it has so much more to offer than simply end-of-life care — especially for children.
If you could change one thing with an eye toward the future of pediatric palliative care, what would it be?
Accessibility. I know that is a very broad answer, but the biggest hurdle for children to receive palliative care is finding a provider who is specialized in pediatric care.
I have found that there are very few stand-alone pediatric hospices. I believe that is because it is very hard to sustain fiscally. There need to be major changes to reimbursement for pediatric hospice and palliative care.
With more reliable and sustainable reimbursements, more programs could open to pediatrics, more organizations could broaden their scope, and new organizations could develop. I would change reimbursement first, because it is the first hurdle that must be overcome in order for there to be greater growth in this important field.
What is a quality that you think all Future Leaders in hospice and palliative care must possess?
Curiosity and the desire to learn. Leading starts with investigating and discovering the needs in the community, whether that is the community at large or the work community you lead.
Leaders who foster curiosity are open and willing to learn about challenges people face. They then can be in a position to make a difference and facilitate change.