Caring from Cradle to Casket: Dr. Jennifer Kennedy, National Hospice and Palliative Care Organization
It is often said that nothing in life is certain except death and taxes. While she cannot do much about taxes, for the past 20 of her 35 years as a nurse, Dr. Jennifer Kennedy has been on a mission to ensure that death is as comfortable and fulfilling as possible through her work in hospice care and as senior director for quality and regulatory with the National Hospice and Palliative Care Organization.
Last year, St. Christophers Hospice recognized Dr. Kennedy as one of 30 Nursing Pioneers in Palliative Care worldwide. Her work advocating for higher quality practices in hospice care as well as supporting the adoption of quality palliative care in the U.S. is a model for an association career with heart.
Association Adviser: Tell us about your professional background. What interested you in nursing, and in working for hospice organizations in particular?
Dr. Jennifer Kennedy: I was a candy striper in my early teens at my local hospital. I knew then that I wanted to be a nurse and felt my path was pretty set. I went to college to become a nurse but pursued broader healthcare advanced degrees because I have a passion for teaching current professions as well as “up and coming” ones. Regarding my nursing career, I like to consider myself a “cradle to casket” nurse because I started in neonatal intensive care and progressed throughout my career to caring for adults at end of life.
Initially, I worked for Children’s Hospital in Washington, DC in their homecare unit and was introduced to pediatric hospice care. This was in the late 1980s when hospice care was being established in the United States. I felt comfortable in the D.C. community visiting children who were seriously or terminally ill and needed help.
AA: What interested you in working for a hospice? And how do you manage the heavy emotions that must come with working with terminally ill children?
DJK: In the early 90s, my mother was diagnosed with metastatic breast cancer. She eventually passed way from it, but she and my family had a wonderful hospice experience with the local provider. Unfortunately, I was living across the country during her hospice care but visited her when I could. I was awed by the care she received from the hospice team. After she died, I decided to dedicate my career to hospice.
Caring for children who have been admitted into end-of-life care is extremely sad, but when you think about the premise of hospice, we are not going to change the diagnosis. What we can do is to meet the needs of the patient and family in the time they have left to sustain or improve their quality of life and have the death experience they want. We help them get to a place where they can be comfortable and have closure. I have always felt that the day I stopped crying with my patients and families is the day I need to move on from this work.
AA: How did you make your way to NPHCO?
DJK: I had a friend who worked at NHPCO. She called and said they were looking for someone with my skill set to be a regulatory specialist. I went in for an interview and decided I wanted to do it. That was more than 15 years ago. My first position involved answering our members’ questions as they related to regulatory compliance. As years went on, I morphed into the Director for Regulatory & Compliance, and I was asked to step into the quality space in 2016. I have been serving as the quality lead at NHPCO since 2018. No matter the position I have had, I maintain a connection to the hospice staff doing the “boots on the ground” work whether it is answering their individual questions, speaking at a conference or developing resources. In my position now as Sr. Director for Quality & Regulatory I am teaching providers about the relationship between compliance and quality and that quality is the cornerstone of a good hospice care experience, like my Mom’s.
AA: NHPCO’s vision is “A world where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer.” What does that look like in your role as senior director for quality and compliance for NHPCO?
DJK: I see my current position at my organization as a lead to developing quality focused initiatives, tools, and resources and helping organizations know what they need to know to be compliant and provide quality care. I’m still a nurse at heart, so I strive to take care of our members and am at their service. Even though I’m a couple times removed from the bedside at this point in my career, I feel like I’m contributing to the quality hospice care by helping our members.
AA: What does your daily job look like?
DJK: I am responsible for all things quality, so my daily focus is ensuring we are supporting our members to know what quality hospice looks like and how to provide it. I am also the lead for our COVID-19 team. That initiative takes time to ensure that all the information we collect and distribute to our membership is accurate and timely. We are very proud of the advocacy we completed with federal entities and Capitol Hill, and the resources we developed in 2020 to help providers with managing hospice and palliative care during a pandemic.
I also serve as lead for NPHCO’s emergency preparedness and management activity. We have an internal team that monitors all types of emergency events and we provide information and support to those affected.
AA: Congratulations on your recent honor as a Nursing Pioneer in Palliative Care from the UK’s St. Christophers Hospice, Celebrating Palliative Care Nursing in 2020 Project. One of the eight characteristics the St. Christophers award seeks to honor in nurses is being a “super connector.” Why is this award and the connections you’re making with the other award recipients so special?
DJK: First, some background about St. Christophers Hospice. It’s seated in London, and the concept of hospice care was developed there by Dame Cicely Saunders in the 1940s and 50s. She was the real pioneer of end-of-life care and developed the holistic “total pain concept” that is the foundation of the hospice approach. Hospice care recognizes that patients with serious and terminal illness can experience physical, emotional, social and spiritual sources of pain and suffering, and the hospice team works together to address the patient’s and family’s needs. St. Christophers is considered the mecca in the hospice community and to be recognized by them is huge.
To celebrate Florence Nightingale’s 200th birthday, the World Health Organization declared 2020 the Year of the Nurse and the Midwife. To participate in this initiative, St. Christophers chose 30 nurses from around the world to be honored as pioneering nurses and to participate in peer meetings to exchange ideas for advancing the palliative nursing profession. To be honored as one of their pioneering nurses during the Year of the Nurse is an honor I can’t even explain. It’s that big! It has been humbling and quite exciting because I am able to engage with the 29 other nurse pioneers monthly to talk about the future of palliative care (which encompasses hospice).
We meet on Zoom once per month for a topic-driven discussion and engagement. Sometimes there are subject matter experts that present, or we simply come together and talk about a predetermined topic. It’s been really interesting to see how unalike but also alike palliative nursing is across the world. It’s unalike because of country specific laws and policies, but the basic premise of clinical palliative care is the same in Israel, the U.S., or the U.K. It’s validating to learn that the heart of what we do is the same.
It’s also interesting to learn how other counties are moving palliative care forward. Incorporating successful hospice practices from other countries into the advancement of hospice and palliative care in the U.S. is something I want to learn more about. Part of this project is that everyone contributes their voice to moving the palliative nursing profession forward.
AA: Is it difficult to communicate with people from other cultures and languages?
DJK: Not really! We all speak English on the calls. While it is relatively easy to understand each other, the biggest barrier is deciphering colloquial phrases from another culture. But we all speak “palliative/hospice care.”
AA: You’ve recently spearheaded the launch of “Quality Connections,” a national program with the goal of improving hospice and palliative care. How is that going? Where do you hope to take the program this year?
DJK: Quality Connections is a shared labor in my department and across others at NHPCO, so I do not claim sole kudos. It has been two years in the making and launched at the end of January! Within 48 hours of the launch, we had almost 100 participants enrolled. Everyone is very excited about the program, and now that it’s open, we’re watching how people engage with it so we can improve it this year and beyond.
What it is: The program is about engaging hospice providers in continuous quality improvement that will drive quality care provision, performance improvement, and service excellence. Quality Connections is very focused on drilling down into actual operations and care provision so participants can identify opportunities for performance improvement.
We developed the program in response to a couple things that are happening at the federal level. Hospice care has been under scrutiny from federal agencies for the past several years and Medicare is moving providers towards “pay for performance” care models. NPHCO felt the timing was right to help providers move the needle forward on their practice by helping them drive their quality of care upward. This year, we will establish and grow the Quality Connections program for hospice providers, and we will also be developing and adding a community-based palliative care track.
AA: What’s the difference between hospice and palliative care?
DJK: Hospice care is recognized in the U.S. and funded by Medicare. An individual needs to be diagnosed with a terminal illness and have six months or less to live to qualify for the Medicare hospice benefit. Palliative care, on the other hand, is a comprehensive care approach for seriously ill individuals who need holistic care but who are not in the 6-month or less prognosis bracket. Currently, palliative care does not have a dedicated reimbursement stream from Medicare. It exists kind of nebulously in the healthcare U.S. healthcare continuum.
AA: What leadership lessons have you learned from your predecessors?
DJK: Good leaders establish a culture of support, transparency, and professional growth. They really listen to their staff. They set reasonable goals and celebrate successes. The best leaders I’ve had made me feel like I walked shoulder to shoulder with them and I was truly a colleague. They also imparted their professional experience and knowledge to help me grow in positive manner. I feel that the best leaders walk the walk with their staff.
AA: What advice would you give to someone wanting to advocate for nurses through an association?
DJK: I always tell people, “Nursing has been good to me” because there are so many opportunities in nursing today. I started my career in 1986 as a bedside nurse in a hospital, and now here I am as a subject matter expert in my field working at a national organization for hospice and palliative care and speaking at conferences all over the country. And I am recently recognized as a pioneering nurse by the mecca of hospice! I feel that nurses can achieve whatever they set out to do in this profession because there is so much opportunity.
I think joining a professional association a great idea. I’m a member of the American Nurses Association and several others. The ANA does a lot of advocacy for the whole profession of nursing without distinguishing between types of nurses. I keep that membership because it’s part of my professional core. Maintaining membership in an organization provides access to education, resources, and information about professional growth in one place. There is no downside to joining an association no matter your profession.
AA: In terms of your job, what keeps you up at night?
DJK: First, because I am a nurse, the nursing shortage is troubling. Enrollment in nursing programs and colleges is down across the board because of so many other job opportunities available now that were not available for my generation. People are not considering nursing as a career as much. There is a huge hole in my profession that’s growing.
Second, change within the healthcare continuum needs to happen sooner rather than later. Services like palliative care must be incorporated into our overall healthcare continuum. I am also concerned about health equity and access issues for underserved populations. I want all people to have the care they need throughout their life and especially at the end of their life.
