This article is reprinted by permission from NextAvenue.org.
Amid the chaos and constant news coverage surrounding the coronavirus lies an underlying fear of death and the realization that life is fleeting — yet very few of us talk about how we want to die. Pregnant women go to the hospital armed with “birth plans.” How many of us have ever detailed a “death plan?” The coronavirus pandemic, however, has made drafting advance directives and holding end-of-life planning conversations even more essential.
Advance directives are written instructions about the care and treatment you want if you reach the point where you can no longer speak for yourself. The most common form is the durable power of attorney for health care. A living will is a more limited type of advance directive.
I have seen families torn, having to decide whether a loved one would have wanted to be kept alive on machines, all the while watching the patient suffer needlessly…
Few people do advance care planning
Sadly, the number of people doing advance care planning is dismal.
In a 2018 national survey, the Conversation Project (an initiative to have every person’s wishes for end-of-life care expressed and respected) found that while 92% of people say that discussing end-of-life care with their loved ones is important, only 32% have actually done so. This is partially due to our society and culture, which is traditionally in denial of death.
Our government does not have policies in place to ensure delivery of important information on how to consider advance care planning. The medical community focuses primarily on curing and fixing. And most of our clinicians are ill-equipped to address end-of-life issues early and in a clear, concise way.
As a palliative medicine doctor, I have an intimate understanding of serious illness and the suffering that comes with it. I have sat with countless patients in their last days and hours.
I have seen the gamut: the torture of over-medicalized last moments and the beauty and dignity of comfortable, peaceful deaths. I have seen families torn, having to decide whether a loved one would have wanted to be kept alive on machines, all the while watching the patient suffer needlessly, unable to interact with — or enjoy — the world, with no chance of recovery to a meaningful baseline.
Reducing end-of-life guilt and trauma
The guilt and trauma could have been reduced or avoided if only someone had explained the burdens of aggressive medical interventions in advanced illness and engaged them in advance care planning. If only someone had explained that the poking and prodding that occurs in hospitals often only serves to prolong death, not life.
According to a 2018 study by researchers at the Institute of Global Health Innovation, the unnecessary suffering at end of life is amplified in ethnic minorities. Language barriers and lack of cultural competency among clinicians, the authors found, create even larger obstacles to having these important conversations.
The question often arises in health institutions: Whose responsibility is it to have these discussions?
Often, a palliative care team gets called in during a catastrophic moment in a person’s disease trajectory — while the patient is gasping for air, riddled with cancer or close to having a cardiac arrest — and the medical team knows that intubation will likely not be a reversible fix. We come in, persuasively and compassionately explaining what machines can and cannot do.
Sometimes, we are able to avoid futility and suffering.
But this model is too little, too late.
In a world where very few of us have ever watched someone in his or her last days to hours of life, the average person believes in the heroic medicine that is peddled on television programs. Everyone follows the “fight” narrative. And no one wants to “give up.”
This is why the burden of informing people about what medicine can and cannot do must be greater than these other forces.
What needs to change
How can we move toward more humanity and dignity and fewer hospitalized, medicalized deaths?
This should be viewed as a public health issue.
Governmental educational programs should be implemented to help the public understand what doctors and hospitals are capable of doing.
Standardized, realistic portrayals of cardiopulmonary resuscitation (CPR) should be made available to everyone. Studies have shown that watching videos of realistic CPR promotes better choices for patients and their families; it reduces unnecessary suffering, too. This particular approach can be especially helpful for those at a disadvantage due to educational and language barriers.
In addition, medical schools and other clinical education venues should continue enforcing the importance of teaching clinicians to be well-versed in having these conversations. Policies to discuss advance-care planning need to be implemented across medical settings. And delivering this information must be distilled down to an understandable level for everyone.
Aside from educating the public and medical personnel, we need a better system for collecting and documenting patients’ end-of-life preferences. Even in patients who do express them and have advance directives, the burden is on the patients to make sure they take their advance directives with them to the hospital.
Despite a multitude of systematic failures that result in unwanted and unnecessary suffering, all individuals — healthy and sick — can advocate for themselves by starting with a simple discussion about their values and wishes in the setting of life-limiting illness.
During this time of heightened anxiety and mandated social distancing, having these conversations and preparing advance care directives may feel overwhelming and scary. But it’s vitally important for us all to ensure more control and dignity in the end — something every American deserves.
Dr. Mariana Khawand-Azoulai is a palliative medicine doctor at the University of Miami and a Public Voices Fellow with The OpEd Project.
This article is reprinted by permission from NextAvenue.org, © 2020 Twin Cities Public Television, Inc. All rights reserved.
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