Dinah Finkelstein
April 7, 2020
I am not a physician. I don't have any medical training under my belt. But my knowledge of end-of-life care discussions comes directly from my clinical work.
I am a hospital social worker and I am often asked to work on the intensive care unit of an acute-care hospital. I still get butterflies when facilitating family meetings.
They take place when the medical team has little faith that the patient will have any quality of life if kept on the machines or, worse if the patient will not survive off the machines. These conversations with a family's loved ones are difficult, to say the least, and, unfortunately, do not get easier with time. Family meetings evoke frustration, grief and sometimes anger as relatives face the onerous responsibility of deciding how would my loved one would want to live or die?
About 50 per cent of the families I meet with do not have these conversations before their loved one gets sick and so I often hear, "My husband is a fighter - please do everything possible to keep him alive." Or, "My mother has survived miracles in the past so she can survive this, too."
As we have seen in other countries, the COVID-19 pandemic has created a scenario where medical teams are unable to provide the optimal level of treatment for all patients, thus they have to triage patients and "choose" the patients who deserve a ventilator.
As a hospital social worker in Ontario, my hope is that we will never have to face this horrific decision. COVID-19 aside, conversations with loved ones about end-of-life must be had. While the current pandemic is difficult beyond belief, it presents a key opportunity to encourage us all to begin these invaluable discussions.
In my work, I often see patients whose life depends on a machine to breathe for them, feed them, hydrate them, etc. Close friends and family spend an indefinite amount of time visiting their loved ones while these patients are unable to communicate.
When facilitating a family meeting in the intensive care unit, I often steer the conversation to ask: "If your dad were given eight minutes to come off the machines and could speak, and if we asked him if he would like to go back on the machines or allow nature to take its course, what would he decide?"
This question often leaves family members silent and confused. It is almost as if they need permission from the patient to let them go. How can they be granted this permission if they never had this conversation when the patient was capable?
My hope is that no one is ill-prepared for such a family meeting. Actually, my hope is that no one ever has to experience the unimaginable pain that one of these family meetings causes. The questions, the decisions, the fear, and the uncertainty are overwhelming, and it is unfair to have to make decisions on behalf of a loved one without knowing what they would ultimately want. How do we avoid this?
Advanced care planning and end-of-life discussions need to take place in a time of choice and cannot be forced or rushed. You may not get all the answers but ask the questions. What are your values? What are your beliefs? What is your cultural background? Do you have pre-existing health conditions that I should know about? Do you believe in aggressive treatment? Or do you believe in allowing nature to take its course? Do you believe in resuscitation like CPR? Do you understand what CPR does and what are its repercussions? Do you want to die with dignity and what does that mean to you?
Sometimes it's hard to launch the conversation. So start with you. Proactively identify for your loved ones your wishes and let everyone take a turn.
The COVID-19 pandemic has brought advanced care planning questions to the forefront. These conversations are recommended anytime but are especially important now given our current situation where the demand on health-care resources is like never before.
Dinah Finkelstein is a clinical social worker at a Toronto-area acute care hospital and at the Social Work Consulting Group.
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Medical staff tend to a COVID-19 patient in an intensive care unit in Brooklyn, N.Y. End-of-life discussions must take place in a time of choice, without being rushed, Dinah Finkelstein writes. You may not get all the answers, but ask the questions. VICTOR J. BLUE The New York Times
This article was written by Dinah Finkelstein Contributor from The Toronto Star and was legally licensed by AdvisorStream through the NewsCred publisher network.
