End-of-life discussions are never easy, but they are essential, especially now, when the COVID-19 pandemic is forcing some people to make difficult decisions about loved ones who may have been stricken by the disease. An advance directive can ease that burden, but not a lot of people take advantage of the opportunity.Dr. Rick Hildebrant is trying to get the word out that officially naming someone who can speak on your behalf in medical emergencies is vital. He's the chief medical information officer and medical director of hospital medicine at Rutland Regional Medical Center.
Dr. Hildebrant spoke to VPR's Mitch Wertlieb. Their interview is below. It has been edited and condensed for clarity.
Dr. Hildebrandt: An advance directive document is a way to communicate with your health care team and your loved ones what your wishes are if you are unable to make those decisions for yourself.
Mitch Wertlieb: Now, do you need one or would you recommend having one if you are a relatively young and healthy person?
Anyone over the age of 18 should name an agent. So that's a simple form that just says: "If I'm unable to make decisions, this is who I want to have making decisions for me." Advance directives are a broad category of documents that include all of those decisions. And naming an agent is the single most important thing that everyone over the age of 18 should do regardless.
Those who have complex medical problems, those individuals want to do the more in-depth advance directive documents that spell out specific scenarios and what people would or would not want. But naming an agent and having a conversation with that person about what it is you want is really a good recommendation for everyone.
And to do that is quite simple. All the forms for all of these things in the state of Vermont is on the Vermont Ethics Network website. There is a form that's simply there to name a health care agent. You have to have a non-family member witness to witness the signatures, and then you can register that document. And everyone should do that.
Dr. Hildebrant, in your experience, what are some of the common reasons you hear for people that have not set up an advance directive or named an agent?
Usually people say things like, 'Well, I had meant to," or "I wanted to, and I just never found the time to do it." Or: "I thought that the process was more complicated than it than it was."
There was a study that's on the Vermont Ethics Network website that talks about how 90% of people say it's really important to talk with their loved ones about end-of-life care, but only 27% actually do that. And 82% say it's really important to put that in writing, but only 23% of people have done that.
These are not easy conversations to have. People don't generally like to talk about the end of life, but people who do it are almost always happy that they did.
From my perspective, the last thing I'd ever want to do is something against someone else's will. I really don't want to do invasive test procedures and interventions that people don't want, but unless I have their wishes written down, the default approach in the emergency department in the hospital is the most aggressive approach possible, and many people don't want that, but they haven't made those wishes clearly known.
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Now, I would imagine that especially during this time of COVID-19, that these advance directives are even more important.
Correct. So in the era of COVID-19, one thing that is really clear, when COVID affects individuals, they generally deteriorate rapidly, and it's generally a respiratory illness. And it's usually hours or maybe a day before people would present and end up on artificial life support because of the severity of this illness.
And in those instances, again, if we don't have any direction in the emergency department, in the ICU, in the hospital, we will pursue the most aggressive treatments available. Many people don't want that. But unless they tell their loved ones and have advance directives in place, we won't know that as medical providers. And having those wishes written down and available to medical providers is very, very important to make sure we're giving you the care that you want.
I'm wondering if you think there are things that people should include in an advance directive that specifically relate to the coronavirus.
There's a lot of other things that go along with coronavirus that we are learning more and more about. But the main clinical syndrome of respiratory failure, we have a lot of familiarity with. And that's the piece I think that's the most important to discuss with your loved ones around artificial ventilation. So, you know, that means being in a medically-induced coma with a breathing tube in your in your mouth that's keeping you alive.
Many patients, and often, people have very strong feelings about that particular intervention and whether that's something they would want or not want.
How simple is it to get an advance directive? Do you have to go through a lawyer, that kind of thing, or is it much simpler than that?
I would strongly recommend for advance directives, to discuss this with your medical provider. This is a medical document for hospitals and health care systems primarily, but it does not require a lawyer. We use a form with a set language that everybody knows what that means. It's much clearer to the health care providers what it is that you want and what you don't want.
The other piece that is really important with this is filling out the document and having in the drawer in your house, and that's the only place it lives, is not helpful. It needs to be available. And I recommend generally giving it to the local hospital, because oftentimes it's in the emergency department where these discussions come up. But there's also a way to register it with the state of Vermont through the Vermont Ethics Network website. And then it's available to everyone.
It's really important to make sure that these documents are widely available so that all health care providers can see them.
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