Summary

Goals of care (GoC) are a person’s clinical and personal aims for the management of their condition.1 People with cancer in the US have reported low rates of GoC conversations with clinicians, and clinicians report a lack of preparedness in conducting these conversations.2 3 The Improving Goal Concordant Care Initiative was launched in 2020 by the Alliance of Dedicated Cancer Centers to address the gaps in the provision of GoC conversations.4 This initiative involved training clinicians in formal communication skills for GoC conversations, integrating the documentation of GoC conversations into electronic health records, and establishing target patient populations and the timing of these conversations.4 Early evaluations of the intervention have found that most patients feel heard and understood by their clinician, and clinicians have positively evaluated their GoC conversation training.5

Challenge

Goals of care (GoC) are a patient’s clinical and personal requests for their care.1 They are commonly used in palliative care and can include a person’s wishes for their treatment, such as attitudes to resuscitation and intensity of intervention, as well as their emotional and spiritual needs.6

Among people with serious illness, discussing GoC has been shown to lead to a better care experience, longer survival, lower health costs and a better quality of life.7-10 Including GoC discussions during clinical consultations has been shown to reduce the hospital readmission rate among people receiving palliative care from 15% to 5%.11

Even though GoC discussions have a documented improvement on care, only 11% of people with cancer (stage II diagnosis or higher) in the US report having a GoC conversation with their clinician.3 Even when GoC are discussed, only 15% of patients report having their emotional and spiritual concerns addressed.6 GoC discussions also tend to occur too late in the care pathway.12 This issue is exacerbated by the fact that only 29% of US clinicians have received formal training in conducting GoC discussions and thus many feel unprepared for these conversations.2

Solution

In 2020, the Alliance of Dedicated Cancer Centers (ADCC), a collective of the leading cancer centers in the US, launched the collaborative Improving Goal Concordant Care (IGCC) Initiative.4 13 This three-year programme aims to address the GoC discussion gaps across all ADCC locations and establish new expectations for when and how GoC conversations occur. Its underlying vision is to ensure that ‘all patients with cancer and their families should receive care that aligns with their values and unique priorities’.5

The IGCC was developed with palliative care and oncology experts, as well as patient and family advisers. The core components of the initiative are:

  • providing formal communication skills training, based on proven GoC communication education, for oncologists and other advanced practice professionals
  • implementing structured GoC documentation in electronic health records
  • establishing expectations regarding target patient populations for GoC discussions and the timing of these discussions
  • conducting an evaluation and measurement framework.

What has been achieved?

The IGCC has been implemented across all 10 ADCC sites. There have been quarterly reports from each center feeding back on the IGCC Initiative, which have been used to assess the core components of the initiative. Each site has chosen its own priority population definitions.5 These range from providing GoC conversations to all inpatients to only offering them to terminal solid-tumour stage IV patients aged over 65.5 Training in GoC conversations has also been offered to clinicians across the sites, with uptake ranging from 8% to 100%.5 The training has been evaluated positively by participating clinicians. The use of GoC conversation documentation when discussing GoC with patients has been varied, ranging from 3% to 100% of conversations.5

Patient feedback on the initiative has shown that over 80% of people with cancer across all sites feel they have been completely heard and understood by their healthcare provider, as well as feeling their provider put their best interests first and understood what is important in their life.5 In contrast, only 33% of people receiving palliative care who did not participate in the IGCC Initiative reported feeling completely heard and understood.14

Comprehensive hospital management support, early agreement on programme design from all stakeholders, and flexibility regarding clinicians’ behaviour and local context have been identified as critical elements to ensure successful implementation of the IGCC Initiative.5

Next steps

A full evaluation of the IGCC Initiative is planned for 2024. This will be an opportunity to gain further insight into issues such as perceived barriers, enabling factors and sustainability. The results from this evaluation will be used to hone the target population criteria for GoC discussions, as well as the timing of these discussions. The evaluation will also assess clinicians’ self-reported preparedness for holding GoC conversations 6–12 months after receiving training.5 This feedback will help to streamline the training and documentation process.

References:

  1. Comer A, Fettig L, Torke AM. 2020. Identifying Goals of Care. Med Clin North Am 104(5): 767-75
  2. Fulmer T, Escobedo M, Berman A, et al. 2018. Physicians' Views on Advance Care Planning and End-of-Life Care Conversations. J Am Geriatr Soc 66(6): 1201-05
  3. Hamel L, Wu B, Brodie M. 2017. Views and experiences with end-of-life medical care in the U.S. San Francisco, California: The Henry J. Kaiser Family Foundation
  4. Alliance of Dedicated Cancer Centers. 2023. Improving Goal Concordant Care Initative. [Accessed 03/10/23] Available here: https://adcc.org/goals-of-care/
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  10. Mack JW, Weeks JC, Wright AA, et al. 2010. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 28(7): 1203-8
  11. O'Connor NR, Moyer ME, Behta M, et al. 2015. The Impact of Inpatient Palliative Care Consultations on 30-Day Hospital Readmissions. J Palliat Med 18(11): 956-61
  12. Yung VY, Walling AM, Min L, et al. 2010. Documentation of advance care planning for community-dwelling elders. J Palliat Med 13(7): 861-7
  13. Alliance of Dedicated Cancer Centers. 2023. About. [Accessed 03/10/23] Available here: https://adcc.org/#our-impact
  14. Gramling R, Stanek S, Ladwig S, et al. 2016. Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting. Journal of Pain and Symptom Management 51(2): 150-54