How to have a “goals of care” discussion when patients near the end of life
Emergency physicians (EPs) often presume that critically ill patients presenting to the emergency department (ED) are in need of life-sustaining interventions. At the end of life (EOL), many patients are caught between the need for our expertise and assistance and the desire to avoid invasive procedures. Unfortunately, our current training models have left many of us ill-equipped to understand and handle the unique needs of dying patients. Contextualizing acute disease presentations in the larger context of chronic illness, communicating with patients and families about prognosis and realistic treatment options, and managing the complex suffering of the dying patient are well within the realm of emergency medicine. As Dr. Mark Rosenberg (Chairperson, the Palliative Medicine Section of ACEP) stated in his EP Monthly interview a few months ago, we are the clinicians who most commonly encounter EOL patients; thus, we “need to be able to manage their symptoms better than anybody else on the planet.”1 We need novel approaches to the ED patients with advanced illness. By working through the case of a patient with advance dementia, we will demonstrate how a patient-centered palliative care model can be used to guide care in the practical realities of a busy ED. In this issue, we will discuss the structured Goals of Care (GOC) discussion.
Mr. B., an 89-year-old man with advanced dementia and multiple comorbidities, is brought to the ED for “not acting himself.” His son, the primary caregiver and health care proxy, reports that his dad has not been eating or drinking and “seems dehydrated.” He has been bedbound for the last six months as a result of progressive dementia and is entirely dependent on his family for Activities of Daily Living (ADL’s) such as personal hygiene and feeding. Mr. B. has presented to the hospital on two separate occasions over the last few months for a UTI and for aspiration pneumonia. Throughout your assessment the patient remains obtunded; you suspect severe sepsis.
As ED team members initiate care, you consider your next step. Nothing would be easier than to fall back on habit: obtain blood cultures and X-rays, give IV fluid boluses and a dose of mega-cillin, and admit to the ICU. But instead, you pause to consider this episode within the context of this patient’s progressive terminal disease and his trajectory of illness. Mr. B is in fact at the end of his life.2 It is with this knowledge that you approach the patient’s son, who is at the bedside, to have a discussion about the best way to care for his father.
“Goals of Care”
Establishing Goals of Care (GOC) can be a complex and time-consuming process, often falling beyond the scope of an EP’s practice. This is particularly true when prolonged illness and complex family dynamics lead to caregiver conflict. Indeed, EPs, and the healthcare system as a whole, expect the GOC discussion to be held by the primary care physician (PCP) well in advance of the ED visit.3 However, in reality, EOL encounters in the emergency department without prior GOC discussion are common, as mentioned by Dr. Greg Henry in his review of the book, “It’s OK to Die.” EPs often struggle by being “caught in the middle between the suffering patient and the unprepared families.”4 To complicate the matter further, the GOC discussions are often not feasible prior to the ED visit,5 but even if they did take place, clinicians often misinterpret living wills.6 Fortunately, even in the harrowed, resource-limited setting of the ED, simple, compassionate communication can often elicit appropriate, patient-centered, treatment goals. An EP’s ability to elicit such goals of patients in hectic ED environment has previously been identified as an EM core competency in geriatrics, and the same is true to all EOL patients regardless of age.7
Various approaches to the GOC discussion have been described (Figure 1). All models share the following elements
1. Appreciating the values of the person behind the disease
Honoring patient autonomy at the end of life must begin with an understanding of who the person is behind the patient. Consider the following phrases:
“Can you tell me a little bit about the patient?”
“What kinds of things were most important to her/him?”
“Has he/she had previous medical experiences (personally or through friends/relatives) that were particularly challenging?”
“Did he/she ever talk about what would be most important at the end of life, particularly if the doctors thought time might be short?”
2. Eliciting the understanding of the disease process
This is a key step in establishing a plan, as poor health literacy and understanding about overall disease trajectory and prognosis can lead to patient and family decisions inconsistent with their underlying values. This is the place to identify such knowledge gaps. Start by asking:
“Can you tell me what the doctors have told you about your condition/illness?”
3. Communicating medical information in laymen’s terms
Using the information obtained in step two as a starting point, the patient/family should be updated on the overall condition. The key to success here is eliminating as much medical jargon as possible. Start with big picture information before going into medical details. Also, a “warning shot” prior to delivering very bad news can be helpful. For instance, “I’m afraid I have some bad news.” This can be followed with a big picture statement like “I think your father is dying.” Check in frequently to ensure that the patient/family is comprehending the medical information and is still able to receive more information.
4. Offering recommendations based on patient/caregiver’s goals
By clarifying which intervention can best achieve the goals previously discussed, this step allows physicians to advocate for patient/family preferences.
“Based on what you’re telling me about what’s most important to you right now and what we know about your overall prognosis, I would recommend that…”
For a code status discussion, avoid mechanical phrases like:
“Do you want to be resuscitated, which means we’ll do chest compressions and shock you if your heart stops?”
A better expression of recommendation may be:
“Since you’ve told me it’s important for you to die at home, surrounded by your family, and that you don’t want to spend the end of your life on machines, I recommend that we allow you to have a natural death and not try to interfere when your heart stops.”
Understandably, families often feel burdened and stressed by EOL decision-making. It can be helpful to remind them that they are acting as the voice of their loved one, rather than making decisions for them.
“He Hated Hospitals”
You find a quiet place to sit down with the patient’s son and learn that the patient “was stubborn and independent” and that “he hated hospitals.” The son adds that he “would die if he saw himself like this” because his greatest fear was “being a burden on others.”
While exploring the son’s understanding of the patient’s condition, you realize that while he was aware that his father’s dementia would be progressive, he was less informed about the expected complications that accompany the terminal stages of this illness. He did not know that most patients with advanced dementia eventually lose the ability to swallow and/or interest in food and that repeated infections are typical in the final stages of dementia. Most importantly, he did not know that there was another treatment path available to his father. He had come to believe that trips to the ED and stays in the ICU were necessary routines.
After assimilating the patient’s values, disease trajectory and acute illness, you introduce a different care plan to the son. First, you inform him that his dad is likely at the end of his life and that he might die from this infection. Second, you say, “Based on what I’m hearing, it seems like your dad would not consider his current quality of life acceptable to him and would not want his life to be artificially prolonged in this state.” His son nods in agreement. You make a recommendation “to focus our care on maximizing his comfort and dignity for the time that he has while allowing him to have a natural death” when his time comes. His son is saddened by this discussion and yet agrees that this plan makes much more sense and is exactly what his father would choose, were he given the opportunity. You are not surprised that the patient would select this path, as studies have demonstrated that over 90% of seniors endorse a comfort-only treatment plan when fully informed about the nature of advanced dementia.8
The GOC discussion is a critical component of the care provided to patients with advanced illness. As EPs, we are accustomed to jumping immediately to life-saving interventions rather than exploring GOC in the critically ill patients. This is precipitated by a sense of urgency – we would rather resolve the unstable airway and turf the bigger questions to the folks upstairs. And yet, there is almost always time. Thinking of the GOC discussion as a “critical intervention” may help EPs find time for these conversations. However, in EOL patients who do not require immediate interventions, a hospital-based palliative care specialist can provide a more comprehensive GOC discussion after admission. As with any other decisions that we make in the ED, EPs must recognize when to postpone GOC discussion based on patient’s clinical status.
Kei Ouchi is an EM/IM resident at Long Island Jewish Medical Center. Ashley Shreves is an assistant professor of emergency medicine and palliative care at Mount Sinai School of Medicine in New York City. Additional editorial assistance by Tara Liberman, DO, Bethann Scarborough, MD & David Marcus, MD
2. Morrison RS, Sie AL. Survival in end-stage dementia following acute illness. JAMA 2000;284:47-52.
3. Grudzen CR et al. Does Palliative Care Have a Future in the Emergency Department? Discussions with Attending Emergency Physicians. Journal of Pain and Symptom Management 2012;43;(1):1-9.
5. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010 Aug 17;153(4): 256-61.
6. Mirarchi FL et al. TRIAD III: nationwide assessment of living wills and do not resuscitate orders. J Emerg Med. 2012 May;42(5):511-20
7. Hogan TM et al. Development of Geriatric Competencies for Emergency Medicine Residents Using an Expert Consensus Process. Acad Emerg Med. 2010 Mar;17(3):316-24
8. Volandes AE, Paasche-Orlow MK, Barry MJ, et al. Video decision support tool for advance care planning in dementia: randomized controlled trial. BMJ 2009;338:b1964.