Marie Bakitas, DNSc, CRNP, AOCN®, FAAN, was honored with this year’s ONS Distinguished Nurse Researcher Award. She detailed her career and the evolution of palliative care for patients with cancer in a moving presentation that earned a standing ovation during a session at the 41st Annual Congress in San Antonio, TX.
“Palliative care is really at a tipping point,” Bakitas shared. “We are ready with the evidence to make this a reality and to help improve the care of all of our patients. Oncology palliative care is still very much uncharted territory.”
Bakitas currently serves as the Marie L. O'Koren Endowed Chair and Professor at the University of Alabama at Birmingham School of Nursing, though she got her start as a staff nurse at Dartmouth Oncology. In her early work, she made significant research contributions as a member of a National Cancer Institute-designated comprehensive cancer center prior to earning her doctoral degree in 2006. Toward the end of the 1990s, however, Bakitas realized that although pain and symptom management were improving for patients with cancer, the overall progressive illness and end-of-life experience was in critical need of attention.
“My career was at a crossroads,” she explained while referencing the famous Robert Frost quote: “Two roads diverged in a wood, and I—I took the one less traveled by.” From there she transitioned in her career to a palliative oncology clinician and scientist, and much of her work has impacted the recent acceptance of palliative care as a crucial component of cancer treatment.
She detailed the timeline of introduction of palliative care, beginning with the 1990 World Health Organization recommendation for early palliative care, noting that it should be introduced up-front when patients are getting curative treatments and continue to increase as curative treatment diminish over the course of the treatment journey. During that time, Bakitas and her team launched Project ENABLE (Educate, Nurture, Advise Before Life Ends), an approach that encouraged incorporating palliative care at the time of diagnosis in an effort to change what happens at the time of death. This became the primary focus of her subsequent research career.
With Project ENABLE, Bakitas and her team asked patients “What do you wish you had known at the beginning of your diagnosis that would help you now?” They found four main themes in the patient responses.
- More empowerment and information in an effort to be part of the treatment planning
- Symptom management
- Support and communication
- Advanced care planning, loss, grief
In 2001, when most oncology professionals were unaware of the potential benefit of early palliative care, Bakitas received the ONS/Trish Greene Quality of Life Lectureship award to present the findings of Project ENABLE.
She went on to publish three ENABLE trials. ENABLE I found that incorporating early palliative care into standard of treatment is feasible. ENABLE II had even more exciting results: early palliative care improved depression, patient quality of life, and symptom management compared with standard of care and it also improved overall survival. “Palliative maintains or improves survival,” Bakitas noted. ENABLE III was recently published that compared early palliative versus delayed palliative care.
Bakitas lamented that gaps in research still exist and impede the successful integration of palliative care, including
- Late referrals to palliative care
- Inability to translate feasible and scalable models for patients in the community and rural settings
- Inadequate palliative care generalist and specialist workforce.
Another hurdle is that state-by-state inconsistencies in uptake of palliative care exist. In the report, “America’s Care of Serious Illness,” published by the Center to Advance Palliative Care and the National Palliative Care Research Center, much of the Southeastern United States received a grading of C or D for lowest uptake in palliative care. “This is why I made my way down to Alabama,” Bakitas joked, noting that there is much work to be done (the state received a D rating) and she will not be retiring any time soon.
In 2014, ONS released a position statement in support of palliative care for patients with cancer, with the following recommendations.
- Palliative care should begin at the time of diagnosis
- Physical, psychological, social, cultural, and spiritual assessments are key
- Family is unit of care
- Provided by inter-professional team
- Stress advance care planning to ensure patients’ wishes are honored
- Palliative care principles incorporated into all oncology care sites
The statement also encourages that oncology nurses
- Advocate for quality palliative care.
- Possess knowledge and skills in National Consensus Project domains of quality palliative care.
- Engage the public and provide fact-based information about advance care planning and informed choice based on individual patient needs.
“This is your call to arms, if you will, to indicate that [palliative care] is part of the oncology nurse’s role,” Bakitas encouraged the audience. “Oncology clinical nurses and researchers have long been on the cutting-edge. Through palliative care, we will make a difference.”
Bakitas, M. (2016). Distinguished nurse research award lecture: Reflections of an oncology palliative care researcher. Session presented at the ONS 41st Annual Congress, San Antonio, TX, April 29, 2015.