Bringing the Palliative Care Narrative to Critical Care Rounds

As a nurse practitioner with more than a decade of critical care experience, I know that interdisciplinary ICU rounds are evidence-based. If I were giving a podium presentation, I would put on my academic armor and share how the goals of interdisciplinary critical care rounding improve collaboration and reduce morbidity and mortality. But my patients and families are not sitting in an auditorium. They are immersed in the unfamiliar sights and sounds of hospital rooms, while we conduct the familiar daily rounds. Let’s consider the narrative we bring to patient encounters through one family’s story. I believe our best measure of effective rounding lies in these stories.

'But He Was Doing Fine'

Twelve days after John's admission, his palliative care consult appeared on our census. The encounter began with my detailed review of John's medical record. His medical history included recurrent colon cancer with metastasis s/p colon resection and receiving second-line chemotherapy. The reason for the consult was a goals-of-care conversation with his wife, Jane, and his children, Julie and Jonathan. Vital to the encounter was John's social history. For me, the social history must be more substantive than a checklist of smoking, drinking or using recreational drugs. Social history sets the tone for family meetings, bringing authenticity and person-centeredness to the patient encounter. I use social history to gain insight into the person behind the illness.

After the formalities, I opened the family meeting with, "I would love to hear the story behind the choice of all your names beginning with J." John's children graciously responded to the icebreaker. Jane, appearing pensive, uttered poignant statements. "John was doing fine before he came to the ICU. He was still getting chemo, but the cancer was gone." There was so much that could be said here, but I restrained my clinical rebuttal and gave Jane the space and place for her to narrate "doing fine."

She shared that John no longer wanted her to attend his oncology appointments, even when he looked too weak to drive himself. She was unable to explain why he was still receiving chemo, the expected outcome of chemo, if there was any discussion of prognosis or even a shared goals-of-care conversation.

The Illusion of Communication

Where did the failure of communication between the healthcare team and family occur? At what point did we address the serious illness questions?

Serious Illness Questions Regarding This Patient

1. What questions do you have about what is happening to John now?
2. What did the oncologist say about the trajectory of the cancer?
3. What thoughts do you have about the burden or benefits of medical interventions?
4. Did you ask John what he would want if time became short?

Jane expressed her frustration with ICU rounding; it was evident that she questioned its purpose. "All I see is a team of medical people talking from door to door; I guess about patients while families wait in limbo, unclear and unseen."

We should pause here and notice that ICU rounding is failing to have the desired impact.

Consider rounds from the family's perspective. I have observed and participated in daily ICU rounds where lab results, x-ray reports, vital signs and medication administration have the spotlight. Brief conversations with the family are often riddled with medical euphemisms and within normal limits (WNL), CBC and CMP results. I caution us as clinicians to rethink the use of WNL and make sure it's not "we never look (WNL)" for the qualitative impact of medical interventions on families.

COVID-19 Complications

This time, John was admitted for respiratory insufficiency secondary to a pulmonary embolism. John and Jane both noticed his compromised breathing at home, but in the face of COVID-19 feared he would get infected if they took him to the hospital. They opted to remain in the safety of their home with watchful-waiting, hope and prayer. The statistical data on COVID-19 does not capture patients like John who delay care and maximize prayer in fear of succumbing to the virus while seeking other medical care.

When John still had decision-making capacity, he declined mechanical ventilator support. Once hospitalized, his hypoxia and altered mental status shifted the decision-making to Jane and his children. John did not have an advance directive despite a recurrent life-threatening illness. His wife wanted life-sustaining therapies at all costs, and the children wanted more information about the benefits of life-sustaining therapies. This familiar complex case creates moral distress for the nursing staff as they watch an overwhelmed spouse navigate another medical crisis.

Although this is my area of expertise, with every difficult conversation, I connect with the uniqueness of each family, their story, their emotions and can only try to imagine their experience. Jane could be angry and confused or feel unsupported and uninformed. How would her experience be different using a palliative care approach?

Palliative Care

The growing acceptance of palliative care over the past decade has been compromised by the increasing resource gap of board-certified palliative care specialists.

Palliative care provides

• Specialized medical care focused on relieving physiological and psychological illness-related symptoms
• Quality-of-life focused care for patients and families facing serious illnesses

The pandemic continues to shed light on the ongoing need for skilled communication in the face of COVID-19, as well as its related serious and life-threatening complications. As an expert palliative care practitioner, I provided telephonic palliative support to the New York Health and Hospital System when their workforce was overrun with critically ill patients one month into the pandemic. I saw that patients hit hard with COVID-19 were different from patients with chronic conditions who experience a trajectory of disease exacerbation and rally, giving providers time to request a palliative specialist to explore treatment options and goals of care.

In the past 18 months, we have watched many patients who present with COVID-19 symptoms go rapidly from diagnosis to decline and even death. There was no prior opportunity for advance care planning to discuss what mattered most to them. VitalTalk has crafted language and videos to help providers, even those with little experience in palliative care, address difficult COVID-19-related conversations.

Palliative Care Narrative

November is National Hospice and Palliative Care Month, and while discussing the results of labs and radiographic images is pertinent to patient encounters, I offer an additional narrative for critical care nurses during rounds:

1. The patient is complaining of uncontrolled (pain/nausea/anxiety/breathlessness) that must be addressed.
2. The family is struggling with fragmented medical information. They do not understand that the chest x-ray looks better, yet their loved one is still on a ventilator.
3. Both patient and family have questions about prognosis, interventions/treatment (chemo, trach, feeding tubes, antibiotics) being offered and the potential outcomes.
4. A family meeting is warranted and should be beneficial.
5. As nurses, we may experience moral distress, and we need to pause and address team well-being.

Just as nurses should not graduate without understanding and articulating the nursing process, they should not practice without understanding the palliative care narrative. The American Nurses Association's position statement charges us to attain a standard of primary palliative care where all nurses have basic knowledge of palliative nursing to improve the care of patients and families, such as the next Jane and John.

Additional Palliative Care Resources

To learn more about palliative care and the role of critical care nurses in the palliative care narrative, review these resources:

• AACN Webinar Series — "Palliative Care in the ICU: Critical Communication Skills"
• ANA/HPNA - "Call for Action: Nurses Lead and Transform Palliative Care"
• Center to Advance Palliative Care (CAPC) — open-access COVID-19 resources

How can we use communication tools and training resources to shift the experience from anger, confusion, and uninformed and unsupported care, and create a narrative that is hopeful, comforting, informed and supportive for patients and families who face serious or life-threatening illness? Please add your comments below.