Bioethics Forum Essay
Covid-19 Underscores Racial Disparity in Advance Directives
During a recent shift, I was the primary provider for a man in his 70s who was brought in by ambulance with respiratory failure. He had been sick for two days with a fever and a cough, weak and short of breath. The chest x-ray performed at his bedside revealed the diffuse, fluffy markings that are familiar signs of pneumonitis from Covid-19.
After giving him oxygen to improve his breathing, treating his fever, and running tests that are standard for Covid-19 patients, I clicked the admission button to cue him up for a bed. My patient and I then discussed goals of care and had a frank discussion about advance directives. He did not have an advance directive, but he knew he did not want to be resuscitated. He did not want to be put on a ventilator, go on dialysis, or receive artificial nutrition. He was quite clear and did not hesitate about these decisions. We signed the advance directive and filed it away in his chart.
The phone call from his wife came two hours later. She thought that “I had made her husband a DNR,” and she was almost to the point of tears. I explained with as much empathy as I could through a mask and a telephone receiver that DNR was a decision he had made on his own. She raised concerns that he was too sick to make that decision. I tried to reassure her that while he was sick, he was still of sound mind and had made an informed decision. I also reassured her that this decision was not taken lightly and that I had gone over the process in detail, with a nurse present.
The patient’s wife and daughter, who was also on the phone with me, were desperate. They wanted to try all the medications considered potential treatments. They wanted to know the statistics, what his chances of survival were if we went full press. I had feelings of frustration and even of anger as the same questions were asked over and over, and expectations were not concordant with his condition. Any effort to resuscitate the patient would likely prove futile. We would be using resources that could be better allocated to patients who were more likely to survive. And the process of resuscitation would put staff at risk by spreading the virus. I also felt we would be harming this man. His wife and daughter did not seem to be listening to reason. Communication was especially hard because we were talking over the phone, with limited opportunity to convey empathy and concern.
The conversation ended with the suggestion that they call their husband, their father, to discuss his decision. I told my patient that his wife and daughter would be calling. He gave me a knowing look.
The patient was a black man from a poor neighborhood. Despite having suffered a gunshot wound years ago and having had sepsis from an infected gallbladder just a year ago, he had never discussed advance directives with his family. There was nothing in his chart to suggest that he had discussed advance directives with any of his health care providers, either.
Conversations about advance directives are important to ensure dignity in life and in death. In one nationally representative survey, however, older black Americans were half as likely as older whites to have advance directives. Black Americans are also less likely to enroll in hospice and consider other end-of-life care options, and they more likely to receive prolonged mechanical ventilation than their white counterparts by a significant margin. Factors that include health care literacy, systems mistrust, and even a difference in race between patients and their health care providers may play a role. But the biggest factor may be how infrequent these discussions take place at all, especially for older nonwhite people.
In the Covid-19 pandemic, and the other pandemics that may follow, it is imperative that health care providers help to ensure parity in conversations about end-of-life care and honoring patients’ wishes. This will require efforts to educate providers about the disparity and encourage culturally sensitive discussions about end-of-life care. The mortality of Covid-19 in elder patients is alarmingly high, and ensuring that families are prepared and have these discussions in advance and throughout the course of care is essential to ensuring dignity and comfort for these patients. Access to quality end-of-life care, like access to all care, should not have racial disparities.
After my patient spoke with his wife and daughter, he did not change his advance directive. After two weeks in the hospital, he was well enough to go home. I checked in on him after he had been discharged and he was doing okay. He thanked me and said he was happy he didn’t “have to go on a machine.” My hope is that he never will.
Stephen P. Wood is an acute care nurse practitioner practicing emergency medicine and critical care, and a fellow in the Center for Bioethics at Harvard Medical School. Twitter: @StephenPaulWoo4.
Unfortunately African-Americans have had a great deal of experience with public institutions that have been negative and hence approach this issue with distrust.
Moreover advance directives have been underachieving for decades because there are little incentives to address this issue among the public at large. Nearly two decades ago M. Weiss and I discussed this point at some length.
We noted that it is difficult for a public policy to be effective when it completion is somewhat of a rarity. We encouraged consideration of some incentives so that citizens become accustomed to completing these forms at the time heawhenlth insurance is implemented, not waiting for critical illness to be imminent.
Education is necessary but not sufficient.
The COVID epidemic makes it even more imperative that advance directive completion ahead of time so loved ones can be part of the decision-making process and feel part of the process.
Regardless of race, advance care planning is best done at home with the goal being having a well informed substitute decision maker available to speak on behalf of an incapable patient. The circumstances this patient presented to hospital demanded urgent planning for acute care interventions. Although the patient was able to speak for himself, his family was left out of the loop leading to confusion regarding his goals of care. Clearly he wasn’t ready to dismiss all treatment, just those that he judged burdensome to him.
As much as possible, benefits of treatments need to be judged from the patient’s perspective. Even a well written living will or advance directive will still need interpretation at the bedside in an acute emergency situation.
I appreciate your essay and the time you spent with this patient to talk about Advance Directives. I am a hospital Chaplain and the only person in our hospital who has advance care planning conversations with patients, the physicians call me to do this. During the COVID crisis and the current no visitors policy, I spend an ever greater amount of my time ensuring that staff has the appropriate decision makers as contacts by asking many of our patients as I am able to get to in a day, who their preferred decision maker is. I agree that the African American population is most reluctant to formulate ADs and most likely to remain on artificial life support far too long when they would be best served with comfort care. It is an ethical issue that comes to the forefront of importance during this crisis.