Matters of the HEEART: How to discuss code status when stakes are high in acute care

Author

Dr. Kelvin Lou (biography and disclosures) & Dr. David M. Williscroft (biography, no disclosures)

Dr. Kelvin Lou’s Disclosures: Has received financial payments for a previous This Changed My Practice article. Mitigating statements: Only published trial data is presented. Recommendations are consistent with current practice patterns. Treatments or recommendations in this article are unrelated to products/services/treatments involved in disclosure statements.

What we did before

Discussing code status is a critical part of the larger goals of care discussion. The challenge is that code status discussions often happen in emotional and high-stake situations. Our previous approach was focused on providing information around interventions and letting the patient decide what they wanted. We would start by outlining the evidence around survival probabilities of interventions such as CPR and intubation. We would describe the consequences of such interventions, such as broken ribs and breathing through an endotracheal tube. In an effort to promote patient autonomy, we avoided providing our personal perspective and would encourage the patient to make their own decision. We would treat hesitancy in decision making as an indication of a lack of medical information, and therefore we would continue providing additional information to facilitate a decision. If the patient remained indecisive, we would ask whether they wanted everything done, as a means to reach a conclusion.

What changed our practice

In our experience the challenge around discussing code status is twofold. First, the fear around discussing a sensitive topic can prevent the integration of medical information. Behavioral research supports this observation and demonstrates that overly heightened emotion can interfere with information processing and decision making. Responding to heightened emotion by displaying empathy and building a personal connection can enhance communication around sensitive topics.^1,2

The second barrier stems from the fear and uncertainty of navigating the ever-increasing complexity of modern medical care. Many patients feel they lack the experience to make a decision even after they have been provided with information.³ Patients may default to maximum intervention as a way to compensate for uncertainty. A shared decision-making approach can be a way support the patient in making a decision. Research reveals that merely eliciting preference around interventions such as CPR and intubation is inadequate to promote shared decision making.⁴ True shared decision making requires a synthesis of a patient’s goals and medical expertise around prognosis and treatment options. The clinician offering a personalized recommendation can be a way to reduce uncertainty and transform a patient’s broad goals into a treatment plan. Traditionally, clinicians have expressed concerns that offering a recommendation may infringe on a patient’s autonomy. However, research shows that patients often value a medical recommendation, especially in high-stakes decisions.^3,4 A personalized recommendation therefore can be seen as a form of compassionate guidance and can help alleviate fear and uncertainty.⁴

What we do now

Discussing code status in acute care when there is fear and uncertainty can create a high-stakes and low-trust situation. Directly addressing the high levels of emotion that surround issues of code status can greatly enhance communication and decision making. The focus of this approach is on building a personal connection and fostering trust at each step, in order to address fear that is a core barrier to communication. This approach recognizes that we are not merely asking patients to decide on a medical intervention, but we are asking for their trust. To address the time limitations in acute care, we have streamlined multiple communication tools into the acronym HEEART.^4–10 Tips on word choice and helpful practices are outlined in Table 1.

1) Heart-first approach:

Focus on building a personal connection before attempting to deliver sensitive information (see Table 1). Investing time in this foundational step enhances the rest of the approach and prevents many misunderstandings. Acknowledging emotion throughout the discussion can reduce emotional distress and enhance information processing. Return back to this step and rebuild trust if there is a breakdown in communication. Building a personal connection also gives insight into the whole person and may reveal how to best communicate with them.

2) Estimate and communicate the prognosis:

There are many tools to estimate prognosis (see Table 1). Assessing baseline function and consulting specialists can help shape the probable range of prognosis. Share a prognosis as an estimate of time or expected functional decline. Promoting prognostic awareness will help the patient to weigh the burden versus benefit of interventions. Recognize that this may involve delivering bad news, so respond to grief and emotion accordingly. Holding space for silence can encourage reflection and acceptance.

3) Explore goals and priorities:

Moving the focus away from discussing specific interventions to exploring values and priorities allows for a more holistic understanding of the goals driving decision making. A patient shifting back and forth between optimistic and realistic goals is to be expected and represents normal coping. This vacillation is not a sign of denial but is a form of hope. Hope lives in the space between optimism and realism. Arguing against optimistic goals can be perceived as arguing against hope, and should be avoided. Instead, encourage the patient to express a range of goals to better explore what matter most to them in addition to life-prolongation. Embracing optimistic goals together with our patient will in turn encourage the patient to accept the possibility of realistic goals. Expressing solidarity by hoping for the best and also planning for the alternative allows the clinician to be the bearer of bad news without being the target of the emotional fallout.

4) Affirm ongoing support:

Hearing an unexpected prognosis can cause fear and strong emotion. A common concern patients have during these times is the fear of being abandoned by their medical team. Explicitly expressing a commitment to providing care regardless of prognosis or outcome can continue to build trust and allow the patient to more effectively hear the upcoming recommendations.

5) Recommend a Treatment plan:

Within the shared decision-making framework, the clinician is the medical expert and the patient is the expert on their goals and priorities. Trust is maintained when the clinician expresses confidence in their assessment and still demonstrates openness to discussion about what matters to the patient.

Some patients may perceive anything aside from maximum intervention as giving up. Framing interventions in terms of whether it is goal-concordant care or not avoids the perception of losing out on life-saving interventions. It is reasonable to not discuss every possible non-beneficial treatment as too many choices may produce indecision. Furthermore, in Canada, there is a legal precedent to not offer treatment that is deemed to be non-beneficial.^11,12 Depending on the patient’s information preferences, it may be helpful to explicitly state whether CPR is recommended as the term comes up frequently in medical discussions. The code status designation is most useful as a tool to communicate between clinicians. If sharing this with the patient, it is best left at the end once the full medical context has been discussed.

Encouraging deliberation and reflection allows for true shared decision making. Our primary goal is to make sure the recommendation is heard in its full complexity, not to secure immediate acceptance. As medical stability allows, it is reasonable to defer a firm decision on code status designation to later on in the admission. Framing the decision as an ongoing conversation as opposed to a one-time final decision can also reduce the likelihood of triggering a fight-flight-freeze response that will hamper future decision making and ongoing dialogue.

Table 1. Tips on word choice and helpful practices in high-stakes situations.

Download Table 1 as a PDF.

Examples of recommending possible treatment plans

Recommending aggressive comfort-focused care:

• Comfort-focused care means that we work very hard to make sure you are comfortable. This means aggressively treating symptoms like pain, shortness of breath or nausea. We will watch you closely and you will be looked after by doctors and nurses.
• Comfort-focused care does not mean we do not look after you. We just look after you in a different way. Instead of trying to fix a problem we know we cannot fix, we instead work very hard to make sure you are comfortable.
• What this looks like is that we still give medications, equipment and treatments that enhance comfort and quality of life. This includes injectable medications through the skin and interventions such as nerve blocks and infusions as they are needed.
• Based on the goals you have shared, this is what I recommend.

Recommending full medical care:

• Full medical care means that we work hard to prolong your life and strike a balance between maintaining your function and quality of life.
• What this looks like is that we do medical tests to find things that we can fix and reverse. For example, if there is an infection, we provide you with antibiotics and IV fluids to help you get better. If you have a bleed, we do procedures to fix the source of the bleed and give you blood transfusions as required.
• Based on the goals you have shared, this is what I recommend.

Recommending against artificial life support:

• Has anyone talked to you about life-sustaining therapies before?
• Life-sustaining therapies are used when you are so sick that we need to use machines to keep you alive. For example, a machine to help you breathe and electricity and chest compressions to restart your heart if it were to stop. This is very aggressive and can easily hurt you more than it will help you.
• In your case, based on your goal of [goal], I am worried whether life-sustaining therapies will actually help. Why I say this is because the chances of these treatments working go down when you have [insert patient specific reason].
• In the event it actually does work and we bring you back, you may be so changed that you may not find the quality of life to be acceptable. Especially because of your goal of [goal], going through artificial life support may actually prevent you from achieving these goals because you would be stuck in hospital and dependent on machines.
• Based on what you have shared about what is important, I do not recommend life-sustaining therapies as I believe it will hurt you more then it will help you.

Resources

• Managing Code Status Conversations for Seriously Ill Older Adults in Respiratory Failure⁷
• Serious Illness Conversation Guide 
• Elephant and Rider Model

References

1. Dolan RJ. Emotion, cognition, and behavior. Science. 2002;298(5596):1191-1194. doi:10.1126/science.1076358 (View with UBC)
2. Jansen J, van Weert JC, de Groot J, van Dulmen S, Heeren TJ, Bensing JM. Emotional and informational patient cues: the impact of nurses’ responses on recall. Patient Educ Couns. 2010;79(2):218-224. doi:10.1016/j.pec.2009.10.010 (View with UBC)
3. Einstein DJ, Einstein KL, Mathew P. Dying for advice: code status discussions between resident physicians and patients with advanced cancer–a national survey. J Palliat Med. 2015;18(6):535-541. doi:10.1089/jpm.2014.0373 (View with UBC)
4. Jacobsen J, Blinderman C, Alexander Cole C, Jackson V. “I’d recommend …” how to incorporate your recommendation into shared decision making for patients with serious illness. J Pain Symptom Manage. 2018;55(4):1224-1230. doi:10.1016/j.jpainsymman.2017.12.488 (View)
5. Daubman BR, Bernacki R, Stoltenberg M, Wilson E, Jacobsen J. Best practices for teaching clinicians to use a serious illness conversation guide. Palliat Med Rep. 2020;1(1):135-142. doi:10.1089/pmr.2020.0066 (View)
6. Buckman RA. Breaking bad news: the S-P-I-K-E-S strategy. Community Oncol. 2005;2(2):138-142. doi:10.1016/S1548-5315(11)70867-1 (View PDF)
7. Ouchi K, Lawton AJ, Bowman J, Bernacki R, George N. Managing code status conversations for seriously ill older adults in respiratory failure. Ann Emerg Med. 2020;76(6):751-756. doi:10.1016/j.annemergmed.2020.05.039 (View)
8. Cooper Z, Koritsanszky LA, Cauley CE, et al. Recommendations for best communication practices to facilitate goal-concordant care for seriously ill older patients with emergency surgical conditions. Ann Surg. 2016;263(1):1-6. doi:10.1097/SLA.0000000000001491 (View with UBC)
9. Haidt J. The Righteous Mind: Why Good People are Divided by Politics and Religion. 1st ed. New York: Pantheon Books; 2012. (View with UBC)
10. Childers JW, Bulls H, Arnold R. Beyond the NURSE Acronym: The functions of empathy in serious illness conversations. J Pain Symptom Manage. 2023;65(4):e375-e379. doi:10.1016/j.jpainsymman.2022.11.029 (View)
11. Handelman M. Consent to withdrawal of life support: what the Supreme Court said in Cuthbertson and Rubenfeld v. Rasouli. Whaley Estate Litigation. 2012 (Download PDF from WEL)
12. Oczkowski SJ, Rochwerg B, Sawchuk C. Withdrawing versus not offering cardiopulmonary resuscitation: is there a difference?. Can Respir J. 2015;22(1):20-22. doi:10.1155/2015/508602 (View)

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Matters of the HEEART: How to discuss code status when stakes are high in acute care

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