“I Wish Things Were Different”…and six other ways to communicate clearly and compassionately when the end is near
Few emergency physicians have been taught how to communicate with patients and families about end of life care. Unlike the systematic approach taken with procedures like intubation and central line placement, “goals of care” conversations are typically done extemporaneously, using previous experience, observation and tools like intuition and best judgment to get the job done. The hope with any conversation like this is that the patient’s medical condition, coupled with their values and goals, will ultimately determine the treatment path they choose. In reality, patients and families often make decisions about the use of life-sustaining treatments that are not in their best interest because we mislead them with our poorly chosen, but well-intentioned words. It turns out, end of life conversations are also procedures, and intuition is a poor substitute for deliberate learning and practice. While mastering these discussions is a life-long process, some simple skills, strategies and word substitutions can improve your practice immediately.
Don’t: Walk in unprepared
Do: Be prepared for what is a high stakes, emotionally charged conversation
Review the medical chart if one is available. Look for previously completed advance directives in the chart, in the NH paperwork, etc. Maybe you even have time to call the patient’s oncologist or primary care provider to review what discussions have transpired thus far. If the patient does not have decisional capacity, ensure that the appropriate surrogate decision maker has been identified.
Don’t: Wing it
Do: Use a roadmap and actually practice what you’re going to say before you say it
Different roadmaps exist for navigating the “Goals of Care” discussion. Common elements to all include:
- Prepare for conversation (see above)
- Learn what the patient/family know “What have the doctor’s told you about your illness?”
- Deliver information about the patient’s condition, minimizing jargon and emphasizing big picture issues. Precede this with a “warning shot” if bad news is coming. “I’m afraid I have some bad news. Your mom is dying.”
- Learn the patient/family goals and values, in the face of the newly learned clinical reality and prognosis “Knowing that time is short (or that we can’t fix your illness), what’s most important to you/what are you hoping for?”
- Make a recommendation to the patient/family about a medical plan that makes the most sense for them
Don’t: Ask “do you want everything done?” or take requests that “everything be done” seriously
Do: Systematically evaluate goals and then make a RECOMMENDATION about an ideal treatment plan
Doctors often interpret requests that “everything be done” to mean that the patient would want access to every potential life-sustaining treatment, regardless of the burden or potential for benefit. This is rarely the case. Patients do not have the health literacy to understand the consequences of their requests for “everything.” A more nuanced conversation about goals of care can reveal what trade-offs a patient/family are willing to make in terms of quality versus quantity of life.
Don’t: Say “there’s nothing more we can do”
Do: Say “there’s so much more we can do to improve your quality of life”
If there was “nothing more” to be done for patients with terminal illnesses forgoing curative or life-sustaining treatment, hospice wouldn’t exist (nor be the thriving system of care it is in the US). Physicians often use these words when there’s nothing more they know how to do to help the patient. Patients and families hear these words as signs of abandonment by the medical community. If you don’t know how to help, assure the patient/family that you will enlist palliative and/or hospice resources to ensure that they get the care they need and deserve.
Don’t: Ask “Do you want to be resuscitated?” or “Are you full code?”
Do: When appropriate, suggest that it would be in the patient’s best interest to have a “natural, peaceful death”
If more details are needed, indicate that “attempting a resuscitation” would be very unlikely to work and may only rob the patient of dignity and peace in their last moments of life. For patients with terminal or advanced chronic illnesses, resuscitation attempts following a cardiac arrest are rarely successful and when they “work,” typically lead to a prolonged dying experience in the ICU. Doctors spend most code status discussions focused on resuscitation procedures and little time on what patients care about most – their chances of benefiting from the intervention.
Don’t: Say “I’m sorry” after giving bad news
Do: Say “I wish things were different”
While all patients need our sympathy, few want our pity. Though rarely the intent, pity can occasionally convey feelings of condescension and superiority. Using “I wish” statements helps communicate our concern and sadness over the patient’s situation, while avoiding the unintended message conveyed by saying “I’m sorry.”
Don’t: Kick yourself if you’ve made every mistake on this list. I certainly have. The road to a disastrous “goals of care” discussion is paved with good intentions.
Do: Try a new approach in the hopes of communicating more clearly and empathetically with patients facing death and families struggling with the impending loss of a loved one