Empowering Goals of Care for Vulnerable Communities During COVID-19

By Julia Randall, MD, Yamini Saravanan, MD, and Janice John, MS, MHS, Cambridge Health Alliance


Cambridge Health Alliance (CHA), a public ambulatory care and hospital system in the Boston area, serves communities in the epicenter of the Massachusetts COVID-19 outbreak in Middlesex County. Our commitment to caring for a diverse, largely immigrant population, with a strong focus on primary care and population health, has always meant thinking differently about care delivery. When COVID-19 struck, our system rapidly adapted to increase inpatient capacity in anticipation of the surge. CHA developed an outpatient clinic and care model for continuous management of COVID-19 in outpatient settings. To date, the CHA Respiratory Clinic has cared for more than 3,000 patients.

Our approach to caring for patients with COVID-19 in the ambulatory setting initially focused on triaging patients needing urgent transfers to higher levels of care. This quickly transitioned to include intensive outpatient management of sick patients who didn’t yet qualify for inpatient admission or chose to be followed in the outpatient setting. This approach evolved as we began caring for patients discharged from the hospital on oxygen, still very sick, symptomatic, and appropriately scared. We have been witness to the darkest moments in our patients’ lives: a woman who came in short of breath, sharing that she had found her husband dead at home the day before; a Spanish-speaking immigrant single mother of three who had to be transferred to the ICU from our clinic and was unsure about who would care for her children; or the many patients with unspeakable fear that they might be next, just like their many friends and family members who disappeared into hospitals.  

The pandemic brings a sense of urgency in all health care settings which, consequently, can further silence the patient’s voice and autonomy in their care. Helping patients find their voice and share their needs and values with us became a guiding principle in integrating goals of care conversations at the CHA Respiratory Clinic. Within two weeks of opening, we realized that the clinic was sometimes the last opportunity for patients and families to be in the same room with a provider before a patient might need hospitalization or even intubation in the ICU, without the benefit of familiar visitors. In response, CHA enacted a proactive approach to initiate goals of care conversations with high-risk patients.

    Challenges to Goals of Care Conversations Exacerbated by the COVID-19 Pandemic

    Goals of care or advanced care planning are often misperceived as conversations about end of life choices. However, the underlying principles of goals of care conversations are to humanize patients and care, integrate the patient’s priorities into management, and align the goals of health care teams and patients. Goals of care conversations have added complexity in vulnerable patient and immigrant communities. These communities have a higher prevalence of trauma histories, rightful mistrust of health care systems, and have different beliefs on life, illness, and death. Studies show that a lack of trusting relationships among patients and providers promotes more health disparities.

    There are also systemic challenges to routinizing goals of care conversations during telephonic or in-person visits during the pandemic. Health systems had to reorganize care as primary care providers (PCPs) were deployed to inpatient or other services. Patients and families with long-term relationships with PCPs are seeing new unfamiliar providers masked and gowned in urgent settings. Inpatient and outpatient providers, for purposes of infection control, were asked to minimize time spent face to face with patients, and usual physical contact of holding a patient’s hand or a hug became off-limits. Patients are without family members in the room to hear prognostic information, support the patient, and discuss collectively.  


    Partial List of Systemic Problems Exacerbated by the COVID-19 Pandemic
    • Urgency to get things done right away.
    • Patients are alone more than ever before; family advocacy is broken down.
    • Increased fear and distrust in the medical system.
    • Further decreases in patient/provider face to face time.
    • Disrupted longitudinal provider relationships.
    • Increased focus on the tangibles like number of ventilators and Medical Orders for Life-Sustaining Treatment (MOLST) rather than what is important to or the worries of a particular patient or family.

    Integrating a Trauma-Informed Framework to Goals of Care Conversations

    To design the first iteration of the goals of care processes at the Respiratory Clinic, we worked in an interdisciplinary team consisting of providers working at the clinic and the Outpatient Community Management team, a palliative care hospitalist at CHA, and a psychiatrist with a focus on palliative care. We also reached out to our language interpreters to share patient stories and serve as cultural ambassadors. During our initial meetings, we listened to patients’ voices and shared stories from our clinical encounters, including the number of times patients asked us about treatment options for COVID-19, disbelieving that we had none to offer that were evidence-based. There were many stories about patients who delayed seeking care because they expressed extreme fear of catching the virus or shame in getting sick. We heard from a provider conflicted about her role during these visits: “I knew there was a chance that the patient would be intubated on arrival, but hadn't yet shared that with him. In the few minutes we had before the ambulance arrived, he called his wife to talk about their car. I should have told him sooner, he could have used that time for an “I love you.”

    This pandemic is stressful and traumatizing to both patients and providers. From these patient stories, we wanted our processes on goals of care conversations to be tailored for our culturally and linguistically diverse patient population. In order to prevent further mistrust and/or re-traumatization, we used trauma-informed care principles of ensuring emotional safety for providers and patients and humanizing the patient-provider relationship to structure our goals of care processes. Using goals of care conversations offers a powerful tool to form deeper connections with patients by shedding the identities of "patient" and "expert". 

    Our aim during COVID-19 is to routinize goals of care conversations in our clinical work at the Respiratory Clinic. Our process acknowledges the current limitations of time in a fast-paced clinic, of provider comfort and skill in having goals of care conversations, and of patient desire to have these conversations in clinic. This systematic review dissected the many operational definitions housed in goals of care conversations. We designed our goals of care processes to meet three overarching aims: (1) to elicit the patient’s needs/goals at every clinical visit; (2) to provide patients with clinical information; and (3) to effectively communicate the patient's goals to all care team members.

    Our approach to the goals of care process was to create a structure within every clinical encounter at the Respiratory Clinic to address common aspects of goals of care, which can be expanded based on patient need and provider comfort. All providers were trained and expected to: (1) elicit and document the patient’s worries/needs/priorities; (2) share information about the course of COVID-19 and patient’s risk of severe disease, after getting the patient’s consent; and (3) update the health care proxy for the patient after a discussion on what this means. At this point, if the patient was interested or needed more time for further discussion, patients could be referred to providers with more expertise in goals of care conversations and/or advanced care planning. These “expert” providers called patients within 24 hours and continued these conversations with the patient and family members. All the Respiratory Clinic notes have a pull-down menu of the different tasks included in goals of care, including a section to document the patient’s worries, questions or, concerns. Additionally, this drop-down menu was included in a more centralized section of the electronic medical record that was used by all care teams addressing COVID. Therefore, all team members had ready access to this information and could add on to pre-existing conversations without repetition or confusion. We also kept an adapted script from Vital Talk in every patient room to help providers start these conversations. 

    Lessons Learned

    COVID-19 took clinicians out of their comfort zones. Goals of care conversations became a tool for us to understand the concerns of our vulnerable patients. Giving the patient a few minutes to speak uninterrupted about their concerns and worries was the best tool that we had. Allowing patients to speak of their concerns opened a window to the factors and life experiences that contributed to their fears. We heard from a young Spanish-speaking immigrant who asked whether “we were saving medications for the privately insured” and from a young man who shared that his symptoms of COVID-19 had triggered traumatic flashbacks from his immigration journey of feeling suffocated in a box with no control. We did not solve problems with this information, but we were able to acknowledge the mistrust or the context of a patient’s current symptoms with much more empathy and understanding.

    CHA workflow
    Workflow to Enhance Goals of Care Conversations

    We need more systematic change if we want to witness the full potential of goals of care conversations as a tool of patient empowerment. Institutions will often measure the number of health care proxies or code status (whether a patient wants resuscitation or not) as proxies for goals of life conversations and advanced care planning. Even though those are important outcomes, process measures of showcasing the patient’s voice are essential for this to be done well. In our quality improvement process, we focus not just on the number of updated health care proxies, but also on the narrative data such as the number of visits where patient worries were recorded. This process has been iterative, with two distinct chart reviews in the past month to assess and document if our providers were having these expanded goals of care conversations. We targeted larger interventions including a standardized portion of the note after the first review, and will speak to individual providers to find out what is allowing or preventing them from having these more robust discussions in the second review. 

    Finally, we have shown that it is sufficient for us to start an open goals of care conversation and transition this conversation to a group of providers with more expertise when needed. This is not only time-saving in a fast-paced clinic, but we believe it leads to better care by giving patients time and space with other family members present, even in a pandemic. Our process in integrating goals of care conversations in an urgent care setting amid COVID-19 demonstrates the therapeutic potential of these conversations for both patients and providers while opening a conversation that can potentially lead to true healing.