By Dr. Lawrence Chow, FRCPC (biography and no disclosures) and Dr. Rose Hatala, FRCPC (biography and disclosures). Dr. Hatala is currently receiving funding through the RCSPC Medical Education Grant, the UBC Faculty Initiatives Grant and from the St. Paul’s Hospital Foundation. Mitigating potential bias: no conflicts of interest.
Contributor: Wallace Robinson (PHC Leader for Advance Care Planning). Disclosures: no disclosures.
What we did before
As internists and palliative care physicians, we have goals-of-care conversations frequently. Whether this is with a chronically ill patient being admitted to the hospital for another acute exacerbation, a cancer patient who is no longer well enough for chemotherapy, or a frail elderly patient with gradual functional decline and loss of quality of life, we have never found these conversations to be particularly easy. However, with deliberate practice, we have certainly become more comfortable.
Like many physicians, our conversations used to focus on discussing possible medical interventions that could be offered, and whether the patient would or would not want them. Sometimes, if we knew a patient wasn’t a candidate for a particular intervention, we were taught not to ask, but to be directive instead. Many of these conversations were narrow in focus and driven with the agenda to “get the DNR” or to fit the patient into a “code status.”
While possibly medically appropriate, this approach left much to be desired. Devoid of clinical context, a compassionately delivered prognosis, and a clear understanding of the patient’s values, it was not uncommon that the patient and ourselves would be on different pages at the end of the conversation. While code status designations are convenient for us, they were not designed with the patient in mind.
In the era of the COVID-19 pandemic, our most vulnerable patients (the elderly and those with chronic illnesses) are disproportionately at the highest risk of mortality. In this difficult and chaotic time, it’s more important than ever that we maintain a humanistic approach to care. This involves keeping the patient, and their values and preferences, front and center in our care. Both prior to, and now during this crisis, we have found it useful to rely on the Serious Illness Conversation Guide (SICG) as a framework for these conversations. A carefully executed “Serious Illness Conversation” may be one of the most important interventions that we can offer in this pandemic.
What changed our practice
The SICG, developed by Ariadne Labs (1), aims to assist clinicians with future health planning. It is a list of patient-centered questions designed to help a clinician gain a better understanding of their patient’s values. The questions in the guide use clinician and patient-tested language and follow a systematic approach. This approach has alleviated our anxiety about saying the wrong thing and helps to draw out invaluable insights into understanding our patient’s priorities for end of life care.
While we may be an expert in the medical aspects of the patient’s illness, it is the patient who holds the expertise about their life journey. The SICG helps to bring these two perspectives together to make a patient-centered recommendation for care, marrying the art and science of medicine.
Our first insight from the guide was delineating the difference between a Serious Illness Conversation (SIC), a Goals of Care conversation (GOC), and a code status designation. These three exist on a continuum whereby one informs another, respectively. For most patients, we should be starting with a SIC and, if done properly, we have found that the rest will naturally fall into place.
- SIC: A detailed exploration of an individual’s understanding of their illness, and their hopes, fears, goals, and values.
- GOC: A process of shared decision making, where treatment options may be discussed in the context of patient-centered outcomes. While it may be a stand-alone conversation, it is also the final part of the SIC.
- Code status: A distillation of the above to form a medical designation for the level/type of care a patient will receive.
The second insight we gained from the SICG is how important a shared understanding of prognosis is in order to provide context for the questions around quality of life; we now ensure that we incorporate this into every SIC we undertake. Prognosis is often challenging to predict and even more challenging to discuss with the patient, particularly for those with chronic illness. The SICG provides various ways of disclosing prognosis that compassionately maintains hope, while also allowing the clinician to discuss and plan for what may be ahead.
In particular, the use of “wish/worry/wonder” statements such as “I wish we weren’t in this situation, but I worry that you could get sick from this quickly, and I wonder if we can plan for that possibility” has been a particularly helpful phrase. Such phrases keep us aligned with the patient’s aspirational hopes, while trying to orient the conversation on preparing for what may be the more realistic and difficult prognosis.
Lastly, a key part of the SICG focuses on exploring patient values ─ their goals, fears, critical functions, trade-offs, sources of strength, and family. As Dr. Atul Gawande outlined in his talk on the development of the SIC: “if you tell me the answers to those questions, I can make a recommendation to you that says: you would not want this towards the end, if these are your goals” (2). We have found this to be true in our conversations with patients. If we take the time to ask the questions and truly listen, we can feel confident in making a medical recommendation that is in line with the patient’s values. GOC and code status then fall naturally into place.
What we do now
While we have never dealt with a pandemic on this scale before, we have dealt with patients with chronic illness presenting with acute exacerbations at risk of deterioration, many times over. The SICG made us feel more comfortable with these conversations, and we realized that this guide would also help us engage in these difficult and pressing conversations with COVID-19 patients.
However, there are some key differences when it comes to patients presenting with severe COVID-19 infection compared to the usual target audience of the SICG. One difference is that patients will not have been living with COVID-19 for a period of time (as in chronic illness where a patient has time to adapt to their changing situation), and the timeline for deterioration may be as short as hours to days. Also, in this busy clinical context, we and/or the patient may not have the luxury of time to repeatedly engage in the conversation. Thus, not all of the questions in the SICG seemed relevant to this clinical context and therefore the guide required an adaptation.
Our Providence Health Care Serious Illness Conversation Education Committee revised the SICG specifically for conversations with COVID-19 patients (3). In this revised guide, the conversation begins as in the traditional SIC with setting up the conversation, assessing the patient’s understanding of the disease and prognosis.
When it comes to sharing our understanding of prognosis with the patient, we use the ‘wish/worry/wonder’ approach.
“COVID – 19 is a viral illness that spreads like the flu. We know it is particularly serious in patients like you. I wish we were not in this situation, but I’m worried that you could get much sicker very quickly. If that happens you are at risk of dying in a short period of time.”
Ensure you allow time and space for the patient to process and to acknowledge emotions. We then move into the heart of the SIC, listening to the patient as we explore key topics:
- “If things get worse, what would be most important to you?”
Fears and sources of strength:
- “What are you most afraid of right now?”
- “What gives you strength as you think about what may be ahead with this illness?”.
Family and preferences for notification
- “How much does your family know about what’s important to you?”
- “Is there anyone you would like me to contact?”
We close the conversation with treatment recommendations, including whether ICU/ventilation would be in line with the patient’s goals. In patients for whom it is unlikely they will regain their quality of life following ICU admission and/or ventilation, we may be more directive about this than in our typical SICs. This is because respiratory decompensation can occur quickly and there may not be another opportunity for this discussion with the patient.
As we’re closing the conversation, we give more emphasis to all the treatments that we are offering to the patient that are in line with their goals, as opposed to focusing what we’re not offering. We check in with the patient as to their thoughts about our management plan and we reassure the patient that our team will care for them throughout their illness, no matter the trajectory.
Please see the Providence Health Care COVID Serious Illness resources for more information: http://covid19.providencehealthcare.org/resources/tools-covid-conversations-patientsdms.
- Serious Illness Care. Adriadne Labs. View. Accessed May 6, 2020.
- Atul Gawande. How to Talk End-of-Life Care with a Dying Patient. YouTube.com. Watch video. Published October 12, 2010. Accessed May 6, 2020.
- COVID Serious Illness Conversations and Treatment. Providence Health Care. View. Updated April 27, 2020. Accessed May 6, 2020.
- Serious illness conversation guide. Fraser Health. View PDF. Updated March 26, 2020. Accessed May 6, 2020.
- Advance care planning resources for serious illness. Fraser Health. View. Accessed May 6, 2020.
- Chen C, Rubensohn H. Serious illness conversations and capturing advance care planning. This Changed My Practice (UBC CPD). View. Published April 12, 2017. Accessed May 6, 2020.
- Andrea W. The unvoiced questions of children experiencing an illness, dying, or death in their family. This Changed My Practice (UBC CPD). View. Published April 29, 2015. Accessed May 6, 2020.