Martha L. Twaddle, MD: Updated National Clinical Guidelines for Palliative Care

As seriously ill patients and their families compose the largest growing sector in the health care need of the United States, having access to palliative care is of the utmost importance. With the release of the 4th edition of national palliative care clinical practice guidelines, however, that care is being made all the more accessible.     

“Palliative medicine is, by definition, interdisciplinary care,” said Martha L. Twaddle, MD, clinical associate professor at Northwestern University Feinberg School of Medicine, in an interview with MD Magazine^®. “It’s about working as a team, and the interdisciplinary model is one where everyone of us has the ability to screen for distress for unmet needs outside of our area of expertise. We’re asking health care to get back to what it was originally intended to be—to take care of people in the context of their family and community and personalizing their care.”

“The guidelines are really important because by saying, ‘These are the essential elements, these are essential to have in order to say you’re doing palliative care,’ it helps to turn the care into the model that we say is so important to the care of seriously ill people,” she added.

Originally created in 2001 and published in 2004, the Clinical Practice Guidelines for Quality Palliative Care emphasize critical aspects of the field. In the updated edition, the authors call for critical assessment by the different members of a patient’s interdisciplinary team and emphasize the importance of the family, which includes not only biological family but also the patient’s community and support group. 

Assessing caregiver capacity and stress as well as transitions of care for seriously ill patients are additional areas of focus in the updated guidelines—regardless of prognosis, setting, and age. As a result, pediatrics is also emphasized since Twaddle claims the guidelines are as applicable to 5-year-old as they are to a 90-year-old.

Because of a lack of available literature, the original guidelines were established by a national consensus in the United States. However, the updated guidelines include even more critical stakeholders, with 16 different organizations engaged this edition’s creation. A systematic review of the evidence available to date was also included, which indicated the benefits of palliative care and illuminated areas of research that are still needed.   

“The guidelines have reflected the progression of the field,” added Twaddle. “The AIDS epidemic, quite frankly, is what galvanized the health care field to better care for the seriously ill. In that context, that is where the field of palliative care was really born.”

Twaddle added that a lack of organization largely influenced the standardization of palliative guidelines that are available today, which now form the foundation of all the accrediting that occurs in palliative care. For instance, the Joint Commission uses the guidelines to survey programs to make sure they are doing palliative care.

“The guidelines form the bedrock on which we build our quality metrics and standards,” Twaddle said. “In order to measure good care, it has to link and be related to what the guidelines say are important.”

She added that payment is also largely driven by the guidelines since insurance contracts oftentimes include—sometimes word-for-word—the guidelines for which palliative care is defined.

Another exciting addition the guidelines provide, according to Twaddle, is an emphasis on collaboration. Although specialists are required, in specific situations involving the entire patient team is important. By creating 45 different, real-life practice examples that consist of innovations from individuals who worked to meet the needs of seriously ill patients, the guidelines highlight the importance of collaboration.
  
“We have to create synchronized swimming models,” emphasized Twaddle. “We have to leverage resources from each other and work as a team. Maybe the team isn’t geographically limited or defined; the team might be bigger. [We have to] think of what the capacity is to meet the needs of patients, such as a practice that collaborates with a community hospice or an emergency department that collaborates with a children’s hospital.”  

Looking forward, Twaddle sees the new guidelines as a catalyst for more research as the systemic review revealed gaps in data needed in the field. She claims these gaps provide a framework for which to work off of.   

“One important thing to always emphasize is the difference between palliative care and hospice care,” Twaddle concluded. “Palliative care is for anyone with a serious illness. Hospice is a form of palliative care for individuals at the end of life who have a prognosis of a few months. All that is palliative care is hospice, but not all that is hospice is palliative care. The guidelines speak to the entire umbrella of palliative care—inclusive of, but not limited, to end-of-life care.”