Is That Really What They Want?

Ways Your Code Status Conversations can Make or Break Getting to the Heart of a Patient’s Care Goals

Delivering serious news and exploring a patient’s wishes during a medical crisis are among the most challenging things we do as emergency physicians.

As a palliative care and EM physician, I frequently have these types of conversations with patients and families, both in the rapid context of ED care and in methodical detail as an inpatient palliative consultant. Despite our best intentions when approaching a patient or their family, subtle aspects of our communication can dramatically influence these conversations and our conclusions regarding the patient’s care. These conversations are essential in providing appropriate acute care in the context of a patient’s overall goals and can be tremendously beneficial, even in the limited time available for discussions and decision-making in a busy ED.

The following pearls, based on strategies described in medical communication literature and applicable in a variety of situations, can aid effective and time-sensitive ED goals-of-care discussions. In an ideal world, we would have ample time to make decisions and conduct thorough and exclusively face-to-face conversations. Unfortunately, in the ED, we have to balance time sensitivity with the goal to provide critical care in line with patients’ wishes. Therefore, strategies are described that foster improved communication within the context of these constraints.

Pearl #1: If possible, dive into the chart before diving into the conversation.
Sometimes a quick chart dive is not possible (e.g., when patients are registered under an alternative ID for emergency purposes). However, when feasible, even a brief moment of review can be extremely helpful. A review can provide information such as getting a sense for whom the immediate next-of-kin may be, whether there is any prior documented code status, or if there is an advanced directive on file such as a Physician Orders for Life-Sustaining Treatment (POLST) form or an equivalent type of form. This is especially important for patients coming from care facilities, as they may have prior documentation of their wishes and relatives may not be immediately available or aware that the patient has been sent to the ED.

Pearl #2: Give a warning shot before giving bad news.
Keep in mind that, for us, the chaos of the ED and the potential for patients to suffer a life-altering or life-ending event are routine. However, for most of our patients and their families, this is the worst day imaginable. As obvious as it may be to us that a patient is critically ill, a patient’s family or loved ones may not be as aware of the situation’s seriousness. A warning shot before giving them details can be extremely helpful, as a mind braced for bad news is more likely to hear it compared to someone who is completely blindsided.

Pearl #3: Ensure you have the right people and the right place.
Sometimes we truly can’t get a hold of anyone else, but keep in mind that the person standing nearby may not be the only — or even the primary — person who should be aware of what’s going on, is able to speak for the patient, or can help with decisions. There also may be strong feelings about whether to discuss serious issues in front of a disoriented or unconscious patient.

Sometimes taking a moment for a brief assessment of who’s there and who needs to be aware of what’s going on can be combined with a warning shot to promptly set up a conversation for success: “Hello, I’m Dr. Jones. I need to discuss Mrs. Smith’s condition. How are you connected with/related to Mrs. Smith?... Unfortunately, I am very concerned about Mrs. Smith right now, and I need to discuss her condition further. Would that be okay, and is there anyone else with you here who should be involved in our discussion, or whom we need to include on the phone?”

Ideally, conversations occur in person, but unfortunately, we may only have minutes to determine next steps. Offering to include an essential person by phone allows for their involvement while also emphasizing the time urgency of the situation. Often, in urgent ED goals-of-care discussion scenarios, the patient is too ill to participate in the conversation. If another space is available to talk with your decision-maker, see if that is preferred over speaking in front of the patient, if the patient is unable to participate.

Pearl #4: Give the big picture and keep it very simple.
In the medical field, we are used to conveying complex and comprehensive medical information in brief verbal summaries. This does not work well when communicating with families or loved ones in regards to very ill patients. They are more likely to get lost in the depth of details we provide rather than seeing the big picture, so that is what we need to give them. “Your mother has developed bleeding inside her brain, which is extremely serious, and I’m even concerned that she may not survive this.” They will ask for more specific information as they are ready, but often the big picture of the problem can get lost in conversations full of jargon. With a straightforward statement, they immediately are on the same big-picture page, and that becomes the context for the remaining details of the discussion.

Pearl #5: Ask them about the person, not the procedures.
Along with providing too much medical jargon and details, it is easy to move directly to questions about choosing a particular intervention or procedure. Understanding the patient and their goals is necessary before it is clear which course of action will make sense in each case. Ask about how the patient has been doing prior to their acute event. Some may have been functioning independently beforehand. Others may not have, and their acute illness may be coming on the heels of a long decline, which can affect how decision-makers feel about their present condition.

Ask about prior conversations regarding serious illness and what the patient may have previously stated they would want if they were seriously ill. Did they ever discuss their opinions on life-support measures or other aspects of care if they were to become seriously ill? Was there anything in their life of particular importance, such as their independence, mobility, mental capacity, being able to participate in a specific activity, spending time with friends and family, etc.?

Pearl #6: Briefly outline their options.
Instead of running through a laundry list of options, try to distill down potential courses of action in basic terms and outline two or, at most, three. For example, in a seriously ill patient with a life-threatening event, the treatment could be potentially invasive life-sustaining care versus comfort measures, if a middle ground approach isn’t feasible. In many cases, such as a patient with septic shock, care could range from full code to limited interventions, to comfort measures.

Medical decision-makers want to ensure that “help” is provided to the patient, but what constitutes help will vary across the continuum of illness, and it is up to the medical team to help define what may be beneficial in a given context. Some treatments — such as aggressive life-support measures in patients with advanced terminal illness — may represent a greater burden than benefit. In many cases, however, beneficial and life-prolonging treatments can still be provided while simultaneously avoiding the initiation of measures that merely temporize the dying process without moving patients closer toward a longer-term recovery.

Pearl #7: Determine what options might fit or not fit with the patient’s desires.
Describe the likely outcomes of a particular course of action, and see if the potential outcomes of a course of treatment would conflict with a patient’s underlying goals. For example: “It’s possible that your mother may survive this depending on what we do next, but it’s also very likely that her condition is going to be very different if she survives. I suspect that she would likely need long-term nursing care, potentially for the rest of her life, and she will likely not be able to do many of the things she was able to do previously.”

Reference specific items of importance from learning about the patient, which may be relevant to medical decision-making. For example, some patients are adamant about not wanting to lose function to the degree that they would require long-term nursing care. Determining if the expected trajectory of different care options may lead to unacceptable outcomes is essential in providing goal-aligned care.

Pearl #8: Make recommendations that align medical options with the patient’s goals and values.
Based on the discussion, recommend a course of action that seems to fit best with the patient’s condition and previously expressed care goals. It can be helpful to emphasize that all decisions at this point are difficult, so it’s not about deciding on something that feels like a wonderful choice, but to determine the best decision in the interests of the patient for a difficult situation. For example, if a patient expressed a desire to live longer but also expressed a desire to avoid life support or similar measures, it may be reasonable to suggest treatments that could be useful to address the acute issue, while simultaneously setting limits on what happens if the patient’s condition deteriorates. For example: “Based on what you told me about your father, I think it would make sense to start him on antibiotics for his infection to see if he can get better. At the same time, it sounds like he did not want to be on life support if he ever became very ill, and he would not want to live through a serious illness if it rendered him unable to care for himself independently. If he continues to get worse while he is in the hospital to the point that his heart or breathing stopped, he would not only need CPR, but he would also likely be on life support for at least a period of time. I would expect that his condition, if he recovered, would be serious enough to require long-term nursing care. In this case, I think it would make more sense to do the things that we think may get him better, such as IV medications and fluids, while also not initiating interventions that may go beyond what he would want, such as putting him on a breathing machine or starting chest compressions if his heart stops. I am hopeful that the treatments we can offer him will help, and if they do not, it would make sense to consider potentially focusing on his comfort and aggressively treating any distressing symptoms he may be experiencing, rather than starting interventions he would not want and would not likely get him to a condition he would find acceptable.”

Pearl #9: Provide support to the decision-maker.
Substituted judgment is the process of a decision-maker articulating the decision of another, rather than making the decision themselves. It is helpful to ask a decision-maker to tell you what they think the patient would want, or what they would say under a given circumstance if they could be involved in the discussion. This helps to offload the weight of potential guilt the decision-maker may have in the situation, while achieving the ultimate aim of treatment in accordance with the patient’s wishes.

Regardless of decisions made, acknowledge the importance of the decision-maker’s help to the care team on behalf of the patient. Also thank them for the effort needed to engage in difficult conversations. Highlight the goal of following the patient’s wishes to clarify the necessity of such discussions and help prime the decision-maker for future conversations regarding the patient’s ongoing care.

There are countless ways to conduct difficult discussions in the ED. The information and examples above can help you align your care with a patient’s wishes, and can help you provide guidance to families and loved ones who need details about an acute illness translated into layman’s terms. Such discussions can be extremely difficult and stressful, but you may also find it incredibly rewarding to help families dealing with these difficult decisions. Your sincere effort to show regard for what is important to the patient and their family can be tremendously impactful, regardless of the outcome of the conversation or the illness involved.

Additional Resources
Additional resources are listed below to provide further guidance on dealing with serious illness conversations in the ED.

• “Managing Code Status Conversations for Seriously Ill Older Adults in Respiratory Failure” by Ouchi K, Lawton AJ, Bowman J, Bernacki R, and George N, published in Annals of Emergency Medicine.
• “United States Best Practice Guidelines for Primary Palliative Care in the Emergency Department” by Loffredo AJ, Chan GK, and Wang DH, et al, published in Annals of Emergency Medicine.
• EPEC: Education in Palliative and End-of-Life Care. Northwestern Medicine Northwestern University Feinberg School of Medicine. https://www.bioethics.northwestern.edu/programs/epec/
• VitalTalk Evidence-Based Communication Trainings. VitalTalk.org. https://www.vitaltalk.org/resources/
• “PalliEM Pocket Pals: Goals of Care” by Brooten J and Markwalter D, on org.https://palliem.org/home/palliem-pocket-pals-goals-of-care/
• “PalliEM 5 Minute Consult: AID GOALS – Goals of Care Discussion Guide” by Brooten J and Markwalter D, on org. https://palliem.org/home/palliem-5-minute-consult-aid-goals/

References

1. Ouchi K, Lawton AJ, Bowman J, Bernacki R, George N. Managing Code Status Conversations for Seriously Ill Older Adults in Respiratory Failure. Annals of Emergency Medicine. 2020;76(6):751-756. doi:10.1016/j.annemergmed.2020.05.039
2. Loffredo AJ, Chan GK, Wang DH, et al. United States Best Practice Guidelines for Primary Palliative Care in the Emergency Department. Ann Emerg Med. 2021;78(5):658-669. doi:10.1016/j.annemergmed.2021.05.021
3. EPEC: Education in Palliative and End-of-Life Care. Northwestern Medicine Northwestern University Feinberg School of Medicine. Accessed March 15, 2023. https://www.bioethics.northwestern.edu/programs/epec/
4. VitalTalk Evidence-Based Communication Trainings. VitalTalk.org. Accessed March 15, 2023. https://www.vitaltalk.org/resources/
5. Brooten J, Markwalter D. PalliEM Pocket Pals: Goals of Care. PalliEM.org. Accessed March 15, 2023. https://palliem.org/home/palliem-pocket-pals-goals-of-care/
6. Brooten J, Markwalter D. PalliEM 5 Minute Consult: AID GOALS – Goals of Care Discussion Guide. PalliEM.org. Accessed March 15, 2023. https://palliem.org/home/palliem-5-minute-consult-aid-goals/