Critical Care, Critical Care Roadblock, Palliative Care

Roadblock: Goals-of-Care Conversations

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Welcome to EMRA Critical Care Committee's Roadblock series - the resuscitationist's guide to overcoming the obstacles in the normal algorithm of critically ill patients. Through this series, we will ask the opinions of both EM and CCM fellows/attendings on their approaches to the most common obstacles encountered in a treatment algorithm. 

GOALS-OF-CARE CONVERSATIONS

In this edition, we wanted to focus on strategies to bypass the most common roadblocks when initiating goals-of-care conversations with critically ill patients and their families in the ED. Effective communication with patients and their family members is a very challenging skill that needs continuous practice. Therefore, in this series, we asked Trevor Pour, MD, Assistant Professor of Emergency Medicine at The Mount Sinai Hospital, and Shunichi Nakagawa, MD, Associate Professor of Medicine and Hospice/Palliative Medicine at The Columbia University Irving Medical Center, how they approach some of the most common obstacles when they initiate goals-of-care conversations and how we can become better advocates for our patients and families in the ED.

Q: How do you respond to a family member when they ask you to prognosticate their loved one's illness?

Dr. Pour: This is always tough. As physicians, we often find ourselves struggling to strike a balance between the gentle provision of bad news while being clear, honest, and accurate. We also recognize our limits, and we have a reasonable and natural fear of giving the "wrong" prognosis. However, with that being said, we should - to the best of our ability - use our medical knowledge and experiences to make an informed prognosis of a patient's illness. It not only helps to set expectations, but also allows a family to prepare for a potential outcome. When I provide a prognosis, I avoid using percentages, numbers, and statistics, and instead give the family a clear understanding of possibilities – "Your loved one could die from this injury" – and for the actively dying patient, I give rough time ranges:  hours, days, or weeks.

When asked this question by families, I preface my answer by stating: "As your doctor, I do not have a crystal ball. But based on my interpretation of your loved one's condition, I anticipate…." This not only acknowledges the limitations that I may have as a physician, but it also helps to build a strong foundation of trust between myself and the patient and their family members. I also like using the tried but true phrase, "You should hope for the best but prepare for the worst."

 

Dr. Nakagawa: This is a very challenging question for an emergency physician because they often do not have all the information and data points that an inpatient team would otherwise have to make the best prognosis. However, I believe that based on the information you have, you should give a rough prognostication in terms of time ranges to set the expectation for the family. I also recommend against using percentages since I believe that it can become more confusing to the families.

It is important to obtain some key information about the severity of a patient's illness and their baseline functional status before giving a prognosis. For example, for individuals who have cancer it is important to know the staging of their disease, their metastasis history, and ongoing chemotherapy as this ultimately affects their overall prognosis. Similarly, for patients with chronic conditions such as heart failure, it is important to know if they are maximized on their medical therapy and the frequency of their exacerbations.

In addition, asking patients directly or their families about their baseline functional status is critical. Questions such as: "When was the last time your loved one was able to use the bathroom by himself/herself? When was the last time they had a good appetite? When was the last time they were able to walk and dress themselves independently?" can help you assess the severity as well as the trajectory to more effectively prognosticate their illness.

Q: How do you handle family confusion when seeking their input on choosing from various medical treatments for their loved ones?

Dr. Pour: Your job as a physician is not simply to give the family a menu of treatment options and leave them to decide on one (unless they're medically savvy and want that). Instead, your job should focus on sufficiently informing the family on the current status of their loved one, gaining an understanding of the patient's values, and then helping them by making a recommendation that aligns with those values.

Once you've gained insight into the patient and their decision makers, using statements such as: "It sounds like based on what I'm hearing, this treatment option makes the most sense…  Does that sound like something that they would agree with if they could tell us?" This empowers the family and encourages their participation in a conversation regarding their loved one's goals of care but doesn't put the weight of the decision entirely on their shoulders.

 

Dr. Nakagawa: Asking what a family member "wants" for their loved ones is a bad question. I have a three-stage approach on how I initiate a goals of care conversation with the patient and their family.

In the first stage, you need to first share all the medical knowledge you have about the patient's condition and give a statement on the prognosis of their illness to set the foundation for the conversation.

In the second stage, "clarifying goals of care," you need to elicit information regarding the patient and their family's goals and values before discussing treatment options. You need to be able to picture in your head who and how he/she was before presenting to the ED. Questions such as: "Tell me about your loved one. What are his/her values? What are you most worried about? What makes his/her life meaningful?" give you insight into which interventions best align with the patient's wishes.

In the third stage, "negotiating treatment options," you then use the information obtained from the first two stages and synthesize a treatment plan. You then confirm that plan with the patient and family by using statements such as: "It looks like that your loved one values their independence and performing an XYZ intervention would force them to lose their independence. We should instead focus on making them comfortable. How does this sound to you?"

This three-staged approach helps to create a more streamlined and effective goals-of-care conversation with the patient and their family.

Q: Given the time and physical constraints of working in the ED, how do you prepare for a goals-of-care conversation with the patient and their family?

TP: This is a conversation you need to make time for. And it's something that should not be rushed. I would treat this conversation as you would a high-risk procedure, ie, you should not be stepping out of the conversation unless you absolutely have to.

This is the time in which I would activate a backup resident or physician to help cover the patients you are actively managing so you can devote the entirety of your attention to the patient and their family. Before you proceed, I would make sure all the key family members/friends are in-person. As a physician, you should also have a concrete understanding of what the goals/objectives of the meeting are, and you need to make sure that it is communicated to the family when you begin the conversation. For example, you need to explicitly state if the conversation involves changing the patient's treatment or pain plan or if it is centered around a decision about their code status.

When you initiate a conversation, you also always need to ask the family for their understanding of the situation before you provide information. This gives you insight into the family's knowledge, which can be corrected by filling in gaps or providing updates on their loved ones. Following this, you can gain an understanding of their core values and then provide recommendations that align their values to their medical care.

Following your recommendation and a decided outcome, it is very important to document this conversation and any decisions that were made in order for the rest of the medical team to be aware.

 

Dr. Nakagawa: This is always a challenging conversation, given the time and physical constraints that an emergency physician has to deal with.

First, I would treat this conversation as you would with any procedure you prepare for, and have a mental checklist. In addition, similar to a procedure, the more you practice having this conversation the better you will be at them.

Second, I would look inside the ED for any private room that you can use for the conversation. If there are no private rooms available, it is still okay to have this conversation at the patient's bedside.

Third, I would know exactly which statements you are going to tell the family in terms of their loved one's prognosis. In addition, I would think of every question the family may ask you depending on the clinical context of the patient and their condition.

Q: How do you deal with family members who disagree with each other on the ultimate treatment plan for the patient?

Dr. Pour: If there is a strong disagreement among family members, it is important to take a step back and bring the conversation back to the patient's values. I would probe to learn why they disagree with a recommended treatment plan and how it may differ from their loved one's values. Statements such as: "It is important to honor the decisions or values of patients even though it may go against our own wishes for the patient" often work well and help put things into perspective for family members.

Ultimately, as a physician it is also important to understand the surrogacy law in the state in which you practice to defer final medical decision making to the correct individuals who do not have clearly documented and legally delineated decision makers.

 

Dr. Nakagawa: By initiating the conversation in the emergency department, you are already doing an excellent job by prepping the family and setting a foundation for future conversations. It is OK to not have a final solution regarding their ultimate treatment plan in the ED. If there are small disagreements, I would always circle back to the second stage of clarifying the goals of care with the patient and family to figure out what the patient truly values.

Q: How do you approach patients and family members who come from a cultural background you are not familiar with or speak a different language from your own?

Dr. Pour: First and foremost, it is a must to always have a language interpreter when having conversations with family members and patients who speak another language from your own. I would also argue that you should make every attempt to find an in-person interpreter if your institution has them to help facilitate the conversation. Concepts and ideas are tougher to translate over a voice interpreter which makes a live in-person interpreter an invaluable resource.

In regard to patients and family members who come from different cultural backgrounds than my own, it becomes even more important to ask them what they value and to gather their opinions on the various recommended medical treatment options. I would advise you to never make assumptions about people, their beliefs, or their practices.

To get more practice, you should get in the habit of initiating goals of care conversations with every patient in the ED! Even with patients who present with something simple like a sore throat, you can have a goals-of-care conversation with them. Establishing why patients came to seek care for their sore throat (A work letter? Antibiotics? A diagnosis? To be sure it is not cancer?)  is important to align your diagnostic and treatment options to their actual concerns and values.

 

Dr. Nakagawa: Don't make assumptions about people. If a patient has capacity, you should first ask the patient how much they would like to be involved in their care or if they would like decisions to be deferred to other family members. It is always important to first speak to the patients and understand their values by asking questions as indicated above and then ask for permission from the patient prior to speaking to other family members.

As mentioned previously, it is important to utilize translation services provided by your hospital or institution.

Q: How do you deal with hesitation from family members who refuse to make their loved ones DNR/DNI despite recommendations from the medical team?

Dr. Pour: You have to remember that in this instance, you are not only treating the patient but also their family members. You should first check any biases you may have and determine if there are any miscommunications which need to be addressed. It is always important to circle back and remind family members of the patient's values to help guide the discussion.

Ultimately, if the decision is made to resuscitate the patient, it is your duty to honor the decision of the family unless otherwise indicated by the patient and/or health care proxy. "Futility" is a term often invoked in these scenarios, but it is important that futility is applied to a discrete outcome. Even if "survival to discharge" or "meaningful neurologic recovery" is medically futile, it may still be deeply meaningful - and achievable - to keep a patient alive a bit longer so their loved ones can fly across the country or drive into the city to see them take a few last breaths. In the absence of harm (to patient or physicians) or excessive resource utilization, that is as equally valid as any other plan of care.

 

Dr. Nakagawa: It may cause moral distress to physicians when family requests CPR for patients when it is clearly futile. I try to make sure the family understands what they are choosing, especially that, by doing CPR, they will lose the opportunity to be at the bedside and to hold their loved one's hand at the last moment.

When a family chooses CPR knowing all the implications, I interpret that their suffering of not trying CPR would be somehow more significant than the suffering of their loved one going through CPR (which will be futile). It happens.

Some studies suggest it may be beneficial for families to witness and be present during a resuscitation. It can help them understand the severity of illness of their loved one and as well as provide closure for grieving family members. But if you were to allow that, it is important for you as the medical physician to assign a nurse, social worker, or other non-essential medical provider to guide and talk to the family throughout the resuscitation.

Discussion

In summary, as emergency physicians we play a crucial role initiating and running goals-of-care conversations with patients and their family members. As Dr. Pour and Dr. Nakagawa have mentioned, it is important to prepare for the conversation as you would for any procedure you do in the ED:

  • Create a mental checklist for yourself. 
  • Secure the appropriate time and space to conduct the conversation.
  • To the best of your ability, know the patient's overall prognosis and their core beliefs before providing recommendations to align their values to their medical care.
  • Practice makes perfect. You should push yourself while on shift to initiate these conversations daily to truly perfect your communication skills.

Through this series, we hope you are a little better equipped to deal with an obstacle the next time you initiate a "goals of care" conversation with a patient and/or their family. Stay tuned for the next series in which we tackle roadblocks associated with having goals of care conversations in the ED.

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