Abstract
When advance care plans are not communicated or goals are in conflict, significant family and clinician distress may result. The distress is especially high when potentially nongoal concordant care is expected by surrogates in the emergency department (ED). To demonstrate the effect of off-hour, phone consultations by palliative care clinicians in reducing the family and clinician distress when nongoal concordant care is expected in the ED. A partnership between palliative care and emergency medicine can decrease the burden of decision making and provide opportunities for modeling a goals-of-care discussion by experts in this important procedure.
Case Presentation and Palliative Care Consultation
An 80
On the last day, she was only taking in sips of water. Today, she was difficult to arouse from the dinner table, prompting the family to call 911. On EMS arrival at her home, the patient was found to be working hard to breathe with hypoxia to 60% on room air. The EMS personnel asked and confirmed that the patient did not have any advance directive at home. The patient was emergently placed on a positive pressure, bi-level ventilation device in the field for hypoxic respiratory failure.
Upon ED arrival, the patient had stable oxygen saturation at 95%, although in moderate respiratory distress. The ED workup was significant for PCR-positive COVID-19 with diffuse patchy infiltrate on chest x-ray. During the initial evaluation, a signed medical order for life-sustaining treatment (MOLST) from five years prior was found in the electronic medical records, indicating DNR/DNI code status. No further update was available since five years ago. The primary care provider was contacted, but the office was closed, and a voicemail was left with the answering service.
The daughter (the health care proxy) expressed no knowledge of the previously completed MOLST form. Furthermore, the daughter had not discussed with the patient or family about what care might be acceptable for her. Given moderate work of breathing on a bi-level ventilation device, the patient required urgent intubation in the ED. A clear discordance was apparent between the patient's previously stated wishes and the daughter's intentions. The ED clinician recently underwent professional development training in the importance of palliative care involvement in the ED, 1 including off-hour availabilities through phone consultations. Recognizing that opportunities for palliative care involvements are often missed in the ED 2 and the potential benefits of phone consultations up front in this distressful clinical encounter, as demonstrated by recent studies,3–5 instead of reflexively intubating the patient per the daughter's expectation, this ED clinician first consulted the palliative care team to clarify the patient's goals of care.
As the ED clinician spoke reluctantly about the daughter's lack of knowledge about the MOLST form, the on-call palliative care clinician immediately recognized the moral distress facing the ED clinician by explicitly naming the anticipated care discordance. Quickly recognizing the emotional distress the ED clinician will likely experience (“The daughter might get distraught when you bring up what the MOLST states on the medical records”), the palliative care clinician named the distress (“It must be distressful to have to tell the daughter about the potential for care discordance.”) and supported ED clinician's intention to deliver the best care possible (“We will work together to help the daughter make the best choice possible.”).
Knowing nonpalliative care clinicians often describe comfort care less clearly to patients, the palliative care clinician described two potential pathways the patient is facing: Given moderate work of breathing with maximal noninvasive respiratory support, depending on the understanding of illness and patient's values and goals, the patient requires either intubation and intensive care unit (ICU) admission or intensive treatment focused on relieving her shortness of breath and suffering.
If the latter is what we end up recommending, we must describe this as such to the daughter. Then, the palliative care clinician recommended the following best-practice steps to facilitate the conversation before getting the daughter on the phone together. The palliative care clinician listed out portions of the conversation for both the ED clinician and palliative care clinician to complete and set an expectation that ED clinicians might be redirected. 6 The group conversation between the palliative care clinician, ED clinician, and the daughter was set up using a Zoom conference call in the family waiting room.
Solicit understanding: “What have you heard about what happened today?” by the ED clinician
The daughter stated that the patient was having a hard time breathing at home for the last two days, and when EMS arrived, they placed her on an oxygen mask. The patient did not get vaccinated for COVID-19. When the palliative care clinician followed the above question with “What have you heard about the patient's prognosis, and how was her quality of life before this new change occurred?” The daughter had been told that dementia is a progressive, irreversible illness with a prognosis of months to years at this stage. The daughter also stated, “Mom has been doing fine—though she only recognizes me and others occasionally, she sometimes speaks about the time when we were kids.”
Share bad news: “Your mom cannot breathe due to severe COVID infection, and she could even die from this.” by the ED clinician
Before starting the call, the palliative care clinician crystallized the jargon-free headline for the ED clinician to communicate the bad news. The daughter was surprised to hear that the patient had a respiratory failure with severe COVID-19 infection. She was devastated that the COVID-19 infection was so severe that the patient could even die from this illness.
Align: “We will work together to figure out what the best possible care for her.” by the ED clinician
The daughter seemed nervous and committed to making the best decision possible for her mother.
Explore baseline function and values: “To decide on the best possible care for her, I need to know more about her.” by the palliative care clinician Although shared decision-making is commonly practiced in low-stake settings (e.g., chest pain work ups), most ED clinicians do not understand how to incorporate patient's values in clinical recommendations during high-stake, end-of-life care settings.
7
Therefore, the palliative care clinician explained the importance to the ED clinician and led this part of the conversation to model the skills. If procedure-based questions (e.g., “Would you want your mother to get a breathing tube?”) are brought up by ED clinicians, palliative care clinicians would need to re-direct the conversation to focus on exploring the patient's values and goals. By doing this, palliative care clinicians can model how to build a therapeutic alliance. When asked about baseline function, the daughter reported that the patient was “doing well” at home until two days ago. When asked, “what does well look like?,” she shared that her mom could converse, although not oriented to person or time. Her mobility was limited to a wheelchair only and required assistance with most activities of daily living. She was able to feed herself when supplied with food/drinks. When asked about the minimal quality of life acceptable to live, the daughter explained that the patient “wanted to live” because she “was doing fine until two days ago.” The daughter had never had an opportunity to discuss the minimal quality of life that was good enough for the patient to live with her family. The palliative care clinician encouraged the daughter to explore this topic with the rest of the family in the upcoming 24 to 48 hours.
Summarize: “What I heard you say is….” by the palliative care clinician The daughter confirmed that she was not aware of the signed MOLST form five years ago. From her perspective, the patient was “doing fine” until two days ago. The daughter and other family members had never discussed the minimal quality of life that was acceptable to the patient. Understanding that the patient has a very limited life expectancy and is now faced with a new, life-threatening condition, they do not feel ready to “let her go.”
Make a recommendation: “Based on what I heard and what I know about the medical situation, I would recommend…” by the palliative care clinician As the palliative care clinician recognized that the daughter was ill-prepared to “let her go” (i.e., too emotionally distressed, given unaware of prior MOLST completion and hyperacute clinical decline), the palliative care clinician modeled for the ED clinician how patient's values and goals are incorporated into the final recommendation to intubate and continue current resuscitation for now. The palliative care clinician also modeled to set up a time-limited trial
8
to re-evaluate if the current resuscitation is working or not in the next 24 to 48 hours. The daughter agreed to discuss with her family about the patient's minimum quality of life acceptable in anticipation of repeated discussion in the ICU. Palliative care team will evaluate the patient in the morning in the ICU. The patient was intubated and admitted to the ICU on a ventilator.
The entire group conversation lasted for ∼10 minutes, while the rest of the ED team monitored the patient in the resuscitation room.
Case Follow-Up and Outcome
At 48 hours after the patient's ED presentation, the family meeting was convened. Since a time-limited trial of intensive care was communicated to the daughter and the rest of the family, they were expecting the family meeting. The clinical team, along with the primary care physician (on the phone), reviewed that the trial of intensive care is not benefiting the patient getting better, with an increase in oxygen requirement and new acute kidney injury, despite prone positioning.
The daughter stated that she had a chance to review the minimal quality of life acceptable for the patient with the rest of the family. Her baseline function was limited to a wheelchair, and she required help with most of her activities of daily living before this acute health decompensation—the patient had previously expressed her desire not to want to continue living in the current state. Given the escalating clinical severity, poor baseline function, and the patient's minimal quality of life acceptable to live and anticipated poorer quality of life, should the patient survive this acute event, the clinical team recommended comfort care. The daughter and family agreed that the current intensive care is unlikely to achieve the quality of life acceptable to her and elected to pursue comfort care. The patient was weaned from the ventilator and died peacefully surrounded by her family in the ICU.
Discussion
When advance care plans are not communicated, or goals are unclear or in conflict, this can result in significant clinician distress. A partnership between palliative care and emergency medicine can decrease the burden of decision making and provide opportunities for modeling a goals-of-care discussion by experts in this important procedure. This case highlighted important issues related to the role of palliative care consultants in the ED, especially in rapidly declining patients who may require ICU care.
Early identification of the possible discordance between patient advance directives and health care proxy statements is paramount. Given the lack of awareness by the daughter of the MOLST in this case, the palliative care team was consulted promptly from the ED and was able to explore the understanding of the current clinical status by the daughter. This early involvement allowed the palliative care team to establish their presence from the start, supporting this difficult care decision with the ED clinician. The ED clinical team greatly appreciates the support for the timely goals-of-care conversation, even if the palliative care clinician can only join on the phone during off-hours.
Recognize ED clinicians' moral distress with care discordant with patient's previously stated wishes and support them on what they can do now. ED clinicians face substantial moral distress when the care is potentially discordant with the patient's previously stated wishes, and the family expects this care. Naming this distress outright and focusing the actions on what can be done now will enhance the partnership with the ED team.
The flexibility in the method of involvement ensures early palliative care involvement. Patients with serious, life-limiting illness arrive in the ED all hours of the day when palliative care clinicians may not be physically available on site. As highlighted in this case, such patients may have acute palliative care needs for goals of care and emergent decision making. Established ED and palliative care relationship allows timely consultation over the phone, even when the palliative care clinician is physically unavailable onsite. Such timely involvement results in disposition-changing results for the ED team.
Early time-limited trial of intensive care treatments. ED clinicians often deliver bad news and ask about the patient's preference for life-sustaining treatment toward the end of life during goals-of-care conversations. 3 Forgoing life-sustaining treatments, such as mechanical ventilation, can result in death within minutes to hours. Thus, ED clinicians tend to focus on confirming whether or not the patient wishes to forgo or continue/discontinue such treatments. Having the palliative care clinician join this conversation in this case confirmed the daughter's lack of knowledge of the patient's prior documented wishes (i.e., the completed MOLST). This conversation confirmed that it is too soon to make the withdrawal decision, given the hyperacute clinical decline in the ED. Thus, the time-limited trial was set up early to readdress the goals at a later time, which likely prepared the daughter for the upcoming re-discussion of goals in the ICU.
Empower ED clinicians to discuss a trial of intensive care when the family is not ready to make withdrawal decisions. No published data exist on how often or whether time-limited trials are being set up in the ED. When there is no clear advance clear plan communicated between a patient and their family members, the conversation about code status is often distressful for the ED clinicians. 9 Empowering the ED clinicians to recommend a trial of intensive care when the goals are unclear or not communicated can decrease the burden of this decision making. Furthermore, it provides an opportunity for the palliative care clinician to teach the ED clinician how to set up a time-limited trial and its potential benefits in care after the ED in the ICU.
Footnotes
Acknowledgments
Emergency Palliative Care Working Group members include Emily L. Aaronson, MD, Ryan Baldeo PA, Jason K. Bowman, MD, Paul DeSandre MD, Kirsten G. Engel, MD, Brian Gacioch, MD, Corita Grudzen, MD, Vicki Jackson, MD, MPH, Maura Kennedy, MD, Sangeeta Lamba, MD, Shan W. Liu, MD, SD, Carter Neugarten, MD, Kei Ouchi, MD, MPH, Tammie E. Quest, MD, Janet S. Rico, CNP, PhD, MBA, Christine S. Ritchie, MD, MPH, David Wang, MD, and Alex Zirulnik, MD. We thank the family involved in this case for allowing us to depict the story to the audience for educational purposes.
Funding Information
K.O. is supported by National Institute on Aging (K76AG064434) and Cambia Health Foundation.
Author Disclosure Statement
K.O. receives advisory fees from Jolly Good, Inc., which has no relation to this work. No other conflicts exist for other authors.