Improving Goal Concordant Care Among 10 Leading Academic U.S. Cancer Hospitals: A Collaboration of the Alliance of Dedicated Cancer Centers Open Access

Patients with cancer in the U.S. benefit from a health care system that fosters innovation and discovery. The 10 free-standing, academic cancer hospitals (Table 1) led by the authors play a crucial role in advancing the science to assure excellence in treatment modalities; for example, our centers participated in 75% of the phase I studies for U.S. Food and Drug Administration–approved cancer drugs between 2009 and 2015. Our perspective on cancer care spans the continuum, from bench science to supportive end-of-life care; this broad view allows us to identify opportunities for innovation. A critical area for investment across our centers—and throughout the U.S. health care system overall [1]—is designing care environments in which patient values and goals are reliably elicited and honored.

In reality, the goals and priorities of the health care system are not always aligned with those of the patients we serve [2, 3]. Even when caring for patients with a serious illness, physicians do not consistently speak with their patients about their prognosis, preferences, or goals of care [4–7].

Goals of care have been defined as the overarching aims of medical care for a patient that are informed by patients’ underlying values and priorities, established within the existing clinical context, and used to guide decisions about medical interventions [8]. Understanding a patient's goals of care during significant time points of cancer treatment is essential in tailoring a goal concordant recommendation. When faced with advanced cancer and a life-limiting prognosis, patients may prioritize aggressive care, living independently at home, attending a major life event (e.g., a child's wedding), or transition to hospice care. Preferences may shift over time along with changes in factors such as disease status, prognosis, function, and home and support environments; thus, ongoing conversations are required to continue to provide goal concordant care [7, 9].

Research shows that goals of care discussions with patients with advanced cancers begin too late (about 1 month before death) and usually occur in inpatient settings with providers who are not their primary oncologists [5]. Not surprisingly, studies indicate a gap between the goals of patients with cancer and of their families and the care patients actually receive [10, 11]. When we fail to provide care in accordance with our patients’ unique priorities, we are committing a medical error [1].

On the other hand, when goals of care discussions do happen, they are associated with better patient and family outcomes and less intensive care toward the end of life [12–15]. Diverse national organizations that define quality have recognized goal concordant care as one of the most important outcomes for our patients with serious illness [7, 16–18].

Why, then, don't these discussions to elicit patient goals of care occur more often and earlier? First, oncologists lack the training necessary to assure effective and efficient goals of care discussions [19]. Although palliative care specialists may be uniquely qualified to conduct goals of care discussions, there are not enough of these specialists to meet the demand for their services [18]. Furthermore, the established patient-provider relationship (a foundation of trust for these discussions) is typically with the oncologist. Finally, the cancer care system is fraught with barriers to reliable goals of care discussions, including competing demands and priorities for oncologists, challenges in documenting these discussions in electronic health records in a way that can be easily retrieved when needed, and few systematic methods to identify patients in the ambulatory setting who would most benefit from these discussions.

These barriers persist in our cancer centers, and it is our responsibility to find effective ways to address them. Enhancing goal concordant cancer care is one of the most critical improvements we can make, and our hospitals have already started the hard work of implementing the practice and cultural changes required. One option would be to proceed cautiously and independently. A more compelling option—and the one our centers have chosen—is to use a collaborative learning approach to accelerate the learning possible at any individual center.

The collaborative project is the Improving Goal Concordant Care (IGCC) Initiative, convened by the Alliance of Dedicated Cancer Centers. Collectively, our cancer hospitals have embraced the vision that all patients with cancer and their families should receive care that aligns with their values and unique priorities. To realize this vision, we believe that primary oncology teams must take responsibility for timely initiation and ongoing conversations regarding goals of care with their patients. However, we recognize that oncologists need enhanced training and an enabling practice infrastructure to achieve reliable, effective, and efficient goals of care conversations.

The IGCC is a 3-year (September 2020 to September 2023) initiative designed to address system gaps across our centers and to establish new expectations for when and how goals of care conversations occur. The IGCC's conceptual development was led by palliative care and oncology experts across our 10 cancer centers, with guidance from patient and family advisors. The clinical experts were convened in a series of structured consensus building sessions in 2019 and 2020. Modified Delphi processes—including literature review, brainstorming, voting, and refinement—were employed in developing the IGCC core components. Patient and family advisors were convened via focus group, and the themes were derived and disseminated. As further described in Table 2, the IGCC core components are the following:

• a formal communications skills training program for hematologists/oncologists and collaborating advanced practice professionals,

• structured goals of care documentation in electronic health records,

• expectations regarding the patients who are prioritized to receive goals of care discussions and timing for communication, and

• an evaluation and measurement framework.

As our hospitals began to implement these far-reaching changes, we also faced the unprecedented challenges of the COVID-19 pandemic. For our patients and their families, the pandemic has brought a renewed awareness of the importance of advanced care planning. Instead of detracting from our commitment, the pandemic has only reinforced the need to understand and honor our patients’ goals of care. At all times, goal concordant care is the best patient care we can provide for our patients.

The IGCC will be a critical lever for our centers to test care delivery innovation. We believe that accomplishing this initiative will represent a substantive advance in the experience of patients with cancer throughout the centers, allow sensitivity to diverse populations and cultures, enhance satisfaction of oncology providers, and provide a national exemplar for other cancer care providers. The qualitative and quantitative evaluation across our cancer centers will generate pragmatic learning that we will disseminate and publish. As the leaders of our cancer centers, we are each prepared to provide the guidance, resources, and ongoing support required to implement the IGCC core components. We anticipate that the collaborative commitment of our cancer centers greatly increases the likelihood that our findings will then translate to widespread practice change and improve goal concordant care for patients nationally and internationally.

Acknowledgments

The authors would like to acknowledge the contributions of the following Alliance of Dedicated Cancer Centers committee members in the conceptual development of, and planning for, the IGCC implementation: Eduardo Bruera, M.D., MD Anderson Cancer Center; Amy Case, M.D., Roswell Park Comprehensive Cancer Center; Marcin Chwistek, M.D., Fox Chase Cancer Center; William Dale, M.D., City of Hope National Medical Center; Jullian Gustin, M.D., Arthur G. James Cancer Hospital; Joseph Jacobson, M.D., Dana-Farber Cancer Institute; Shirley Johnson, Roswell Park Comprehensive Cancer Center; Elizabeth Loggers, M.D., Seattle Cancer Care Alliance; Judith Nelson, M.D., Memorial Sloan Kettering Cancer Center; Diane Portman, M.D., Moffit Cancer Center; Sunita Puri, M.D., USC Norris Cancer Center; James Tulsky, M.D., Dana-Farber Cancer Institute; and Jeff Walker, Roswell Park Comprehensive Cancer Center. Funding for the IGCC Collaborative is provided by the Alliance of Dedicated Cancer Centers and its member institutions.

Disclosures

Richard I. Fisher: Bayer US, BeiGene (C/A); Laurie H. Glimcher: Bristol-Myers Squibb, Waters Corporation (E—former), GlaxoSmithKline Pharmaceuticals, Analog Devices, Inc. (E, OI), Repare Therapeutics, Abpro Therapeutics, Kaleido Therapeutics (SAB); Patrick Hwu: Immatics, Dragonfly (SAB); Craig B. Thompson: Agios Pharmaceuticals (SAB). The other authors indicated no financial relationships.

(C/A) Consulting/advisory relationship; (RF) Research funding; (E) Employment; (ET) Expert testimony; (H) Honoraria received; (OI) Ownership interests; (IP) Intellectual property rights/inventor/patent holder; (SAB) Scientific advisory board

References

Author notes