Mastering the art and science of end of life care to support nurses in their daily work
Jennifer can’t remember a time when she didn’t want to be a nurse. From as soon as she was allowed, she volunteered in her local hospital. As it turned out, hospital nursing was not for Jennifer.
“As soon as I graduated, I couldn’t wait to get out of hospital and into the community, into patients’ homes, out there where people are their most comfortable.”
Paediatric home visits were Jennifer’s first taste of palliative care and she immediately felt like she’d found her calling. That sense of vocation was cemented when in 1998 she experienced the care her mother received when diagnosed with Stage 4 breast cancer.
“It was the worst you could have and yet the hospice care she received at the end of life was just tremendous. From then on I decided I needed to dedicate my nursing career to hospice care because I wanted every family to have the experience we had with my mother at home and able to die in my fathers’ arms. That’s what motivates me to do what I do every day.”
Jennifer completed a bachelor’s degree in nursing, a dual master’s degree in health education and case management, and a doctoral degree in healthcare education and policy.
Her current role ensures that her passion and commitment to influence the palliative and end of life care of all, is a reality and not just a pipe dream. As Senior Director, Quality & Regulatory for the National Hospice and Palliative Care Organisation (NHPCO), she’s been guiding hospice programmes across the country for the last 14 years.
“I have the honour of connecting with hospice providers every day. The are invested in making sure people have the best end of life care they can, and they rely on me to answer clinical questions or clarify the regulations under which they serve.”
By gaining their trust, Jennifer says she is now the ‘go-to’ person for validation. In this role, Jennifer also facilitates the COVID-19 team at NHPCO and together they have developed a set of pandemic resources, including 34 free resources to support colleagues across the US. She also serves on the National Quality Forum committees, and Joint Commission Home Care Accreditation Council, as well as collaborating with federal government agencies in a bid to embed improved palliative care in the health care system.
What drives you to make a difference?
It’s a combination of enormous positivity, a desire to keep learning and boundless energy to support other nurses as they endeavour to deliver the best care they can, that keeps Jennifer motivated.
Much of this still stems from that experience of the care her mother received in her final days and weeks. Indeed, a photograph of her mother stands proudly on Jennifer’s desk and serves as a constant driver keep going and do more.
“Even when I feel exasperated with the regulatory burden that I have to navigate some days, I look at the picture of my Mom and say, ‘Ok, Mom, we’ve got to do this and make sure everyone has the end of life that they want, that’s the best that they can have’. That’s what motivates me.”
The failure of US healthcare and health education to give palliative care the standing it deserves is another constant driving force for Jennifer.
“There is no palliative care recognition and yet it would fill so many gaps. My vision for nursing is that it can fill the gap with what’s needed, but you have to do so much proving of cost savings before you receive any funding.”
The third source of inspiration for Jennifer is her ongoing fight to see palliative and end of life care embedded fully into nursing education.
“We have an ageing population that will need care for the next 20-30 years at least, and I think it’s irresponsible for universities not to include palliative care approaches in their curricula.”
Jennifer’s organisation has taken the fight to the corridors of power, lobbying Congress to mandate that palliative care is included in universities. They have not succeeded to date but we aren’t giving up just yet.
How do you inspire others to give their best?
Pre-Covid, Jennifer spent as much time as possible sharing her knowledge and vision, locally, state-wide and nationally at conferences and events. Now frequent appearances on webinars are the most effective way for Jennifer to inspire and inform her nursing colleagues.
“My mantra is, I’m still learning. I am a lifelong student and I always tell students that there this is something new to learn.”
Jennifer knows that it’s her glass half-full approach and constant search for solutions that characterises her best.
“I think if you asked others it would probably be my positivity that people noticed most about me. I like to push people forward and make sure they have what they need.”
While Jennifer has been stuck at home she’s been busy planning for even greater impact, establishing NHPCO as a hub for Project ECHO (Extension of Community Healthcare Outcomes). This project uses tele-mentoring to provide education & peer learning with shared interests.
As she puts it, it’s the culmination of 14 years hard work, and will see the organisation firmly established in clinical excellence.
“I am so excited about this, as it will mean we can up our game even further and provide more evidence-based practice support for nurses and others in interdisciplinary teams.”
What is great about being a nurse today?
For Jennifer, one of the greatest appeals of nursing is its flexibility; the huge number of different roles it offers. It’s allowed her to live all over the country while providing care for people in the community and in their homes.
For her colleagues in nursing, Jennifer highlights the integral role they play.
“I have always felt that nurses are the backbone of the healthcare system. I’m not saying our role is more important than anyone else’s but we are the link between physicians and aides and social workers – the hub to make sure patients have what they need whether an acute or serious illness, chronic disease, or end of life.
In palliative care we are there to ensure the best quality of life, to hold their hand, to hug and provide touch and compassion; I always see us as the backbone.”
Washington DC United States