Goals of care discussions have always been important. In the face of the COVID-19 pandemic, they are essential.
“Conversations are my procedure.”
-Dr. Sunita Puri, Palliative Care Physician
As a palliative care doctor, I have difficult conversations with patients and families in the face of serious illness every day. These conversations strive to balance the hopes and expectations of our patients with the medical realities of their situation. They marry the art and science of medicine.
In the medical world, these conversations are called “goals of care discussions”. They involve a detailed exploration of an individual’s hopes, fears, goals and wishes in the context of their illness. At the end of these discussions, healthcare providers should have enough information to give medical recommendations that align with a patient’s expressed wishes and priorities.
Goals of care discussions should strive to appreciate the physician as an expert in medicine, while honouring the patient as an expert of their own life story.
People who lead these discussions frequently will see common themes emerge. For many individuals, independence, communication, cognitive awareness, spending time with loved ones, and being free of suffering are all important aspects of an acceptable quality of life. Most people do not want to be kept alive if there is no hope for meaningful recovery.
For the majority of patients who are frail, elderly and living with underlying conditions, critical care interventions (i.e. CPR, intubation and ventilation) are not compatible with the priorities outlined above. In this vulnerable population, life support often leads to more suffering without extending life in a meaningful way. For this reason, the medical recommendations that arise from goals of care discussions with this patient population typically focus on medical care outside of critical care.
The available medical care beyond admission to an intensive care unit is broad in scope. It can include anything from aggressive treatment with IV antibiotics, blood transfusions, advanced oxygen therapies and even surgery. Alternatively, it may be centered on pro-active interventions to ensure comfort, peace and dignity as someone approaches the natural end of their life.
Goals of care discussions have always been important. In the face of the COVID-19 pandemic, they are essential.
Many of you have seen the sensationalist headlines out of Italy reporting that people are “being left to die,” due to a lack of ventilators.
While these headlines speak to the seriousness of the global situation (which I by no means want to minimize), they fail to convey that for a subset of the population, the best medical advice is to avoid critical care interventions, including ventilators.
Intubation and ventilation will cause harm in certain populations. This has always been true. As physicians, we took an oath that guides us to “first do no harm.” In these specific circumstances, our ethics are not challenged.
COVID-19 puts our frail, elderly population at disproportionate risk. Elderly patients who contract COVID-19 are dying, and the impact on this population has been devastating. This is indisputable. What is important to understand is that they are dying from COVID-19, not from a lack of resources.
What will challenge our ethics, is if people who would not benefit or would not want critical care interventions get put on life support, because we simply assume their wishes without ever asking them.
Before COVID 19 this happened all the time. Some studies suggest that up to two thirds of elderly patients in hospital are not asked about their preferences for care. Others site a lack of agreement between patients expressed wishes and what is documented in their medical chart, often resulting in individuals receiving intensive care that they otherwise would have never agreed to. (1)
While the limited ICU capacity across our country in the face of this pandemic is something every healthcare provider in Canada is losing sleep over, let me be clear: This particular conversation is not about saving critical care resources for people who have more life-years left. This is about protecting our frail, elderly patients from interventions that cause suffering and harm without meaningful benefit.
As healthcare providers, our opportunity in these cases is to ensure good palliative care is available and offered readily to those who become ill and would not benefit from critical care interventions under any circumstance.
We will stand by our patients and their families, and not abandon them. We will alleviate suffering when possible, and lean into suffering that can’t be relieved. We will offer genuine presence to those we care for during this time of fear and uncertainty.
We will not just “let people die.” We will support them through this journey in a way that honours their personhood and dignity. In a way that encourages peace and does not prolong suffering. They will not be forgotten or pushed to the wayside. They will not be just another number reported on the daily news. We took an oath, remember?
So, now for a call to action. Have the conversation. Get clear on what is important to you, your loved one or your patient in the face of serious illness. The time to do this is today. Not a few days or weeks from now. If you wait, it may be too late.
Please take a moment to review the resources below to help facilitate these conversations.
Stay safe and well in the days, weeks and months ahead.
Lauren
1. Heyland. D. K. (2013, May 13). Failure to Engage Hospitalized Patients and Their Families in Advance Care Planning. https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1673746.
Resources:
The Serious Illness Conversation Guide out of Ariadne labs is a very useful tool to help navigate these discussions. It is intended for health care providers, but some of the questions are worthwhile for everyone to contemplate, especially those who are frail and elderly in the face of COVID-19. Here are a few questions from this guide to consider:
· What are your most important goals if your health situation worsens?
· What abilities are so critical to your life that you can’t imagine living without them?
· If you become sicker, how much are you willing to go through for the possibility of gaining more time?
· How much does your family know about your wishes priorities and wishes?
https://www.ariadnelabs.org/wp-content/uploads/sites/2/2017/05/SI-CG-2017-04-21_FINAL.pdf
My Voice is a provincial initiative here in British Columbia to help citizens with their advance care planning.
https://www.health.gov.bc.ca/library/publications/year/2013/MyVoice-AdvanceCarePlanningGuide.pdf
Speak Up offers a free online advance care planning workbook.
https://www.myspeakupplan.ca/what-is-advance-care-planning/