Minnesota medical ethicist: 'Once we're born, we're in a terminal condition'

Patient voices get lost in today's health care system and the consequences can be particularly costly — financially, emotionally and even spiritually — at the end of life.

Most people want to die peacefully at home, surrounded by family, yet too many spend their final days in a health care facility, subject to invasive treatments they would have waved off had they known what was coming.

Those are the views of Nneka Sederstrom, a medical ethicist in the Twin Cities who recently launched a startup called UzObi to help patients better communicate their values to doctors.

Based in Prior Lake, the company sells an online tool that can help people clarify their priorities and document their wishes, thereby creating a resource that can guide health care decisions not just at death but throughout a patient's life.

Sederstrom, who is the chief health equity officer at Hennepin Healthcare, talked with the Star Tribune about her idea for the company, the moral distress she's witnessed among caregivers during COVID and how she learned an important lesson in medical ethics from a dose of snake venom.

The interview has been edited for length and clarity.

Q: What's the connection between UzObi and your father's death?

A: When my dad died in December 2020, everybody's initial instinct was to say: "I'm sorry." And, you know, I'm grateful, because I'm sad that he's not here. But his death wasn't traumatic. It wasn't devastating. It was exactly what death is supposed to be.

As a family, we knew very, very clearly what kind of life my father would live. He was a very strong, very passionate and proud Nigerian man and there was no way he was going to be debilitated and be happy — that was just not who he was. And he even said it — if I'm not coming out of here walking on my own two feet, then I've lived my life and I'm good.

So, as a family, we got to have uncomplicated grief. We just got to be sad that dad died. I didn't realize how impactful that was until we started talking to other people. ... This is something that should be available to everyone.

Q: So you started a company?

A: Yes, I finally bit the bullet and said: "I've got to create a company." I chose to not just focus on end-of-life care, but on decisionmaking across the spectrum. We call it a "medical blueprint" and it's made up of three different directives — cultural, values and end-of-life. You can choose to complete one, two or all three. The other perk is you can have a virtual clinical ethics consultation to talk through the specific elements.

Having an easily accessible, customizable, personalized set of values-based directives that you can change as your world changes — you get married, have children, all of that — I believe is the only way to truly fix what has been broken in health care for so long.

Q: When patients develop these directives, how do you make sure health care providers see them?

A: That is the No. 1 problem — I have an advance directive, it's paper, it's with the lawyer or it's locked in the safe and nobody has it. The current product that's on the website now is not yet integrated into the electronic medical record, because that is being built out. We're fundraising for that build.

For now, you can email it to whomever. So, we'll collect physician emails. We'll collect family member emails. And we, on the backend, will email it to those folks. What we've built into our system is an early and often notification so that if you've not logged in within six months there's a notification that will tell you: Hey, I need to know if these wishes are still valid.

Q: I gather you'd like to change the conversation about dying in health care, while recognizing that hospitals won't soon hang banners saying "we do death the best." Is that right?

A: My beloved father always said this, and I laugh every time I remember it: "Only is death optional in America." Because we feel like death is this negativity, it's this thing that we want to stave off at all costs and we build up systems and structures, we put lots of money into ... ways to stave off this negative thing.

We've done a terrible job of just accepting that death is a natural end of life. Even if you look at how advance directives are written, they say things like: "If you're in a terminal condition." But I'm like: Once we're born, we're in a terminal condition. ... Death is something that happens to all of us.

Q: A lot of your work focuses on end-of-life care, but that's not the only time when health care needs to hear patient voices, right?

A: I had a woman that was in labor, trying to deliver her baby, but she was refusing to follow instructions and didn't want to go into the delivery room. We found out that in her culture — it's a really small culture in east Africa — that if a woman doesn't drink a vial of snake venom in labor, the baby is not going to be born strong. So, the hospital is like: What are we going to do? She doesn't want to do anything. The baby is going to go into distress and it will become a little bit of a self-fulfilling prophecy — in her mind, her baby had an outcome because we didn't give her snake venom; in our mind, her baby had an outcome because she wouldn't follow our rules.

So, I stepped in and I said: First off, she's in labor, there's only so much the body is going to be able to slow this process down, right? The mental health and wellbeing of this patient is important. And then her entire family is in the waiting room — all these women who have been drinking snake venom and are in front of you and they seem to be fine. Let that woman drink her snake venom. Sign away whatever rights to sue you want her to sign, but we're not going to cause any more mental anguish at this very critical time in her life.

So, they did and she delivered a healthy baby — she was really excited — but that always reminds me of the fact that like nobody ever asked her: Are there any things that you want? Having the cultural-based directive or opportunity to make those kinds of specific requests is super important.

Q: With COVID, patients wound up on ventilators for unusually long periods of time. How has that informed your work?

A: It was devastating to teams because that's not what ICUs were created for. That's not what clinicians who work in ICUs went into this business to do — to house the actively dying for so long. So, the burnout for clinicians was incredible. And still is impactful. We're going to feel it for a long time.

My knowledge of how UzObi could help change the direction of medical moral injury and burnout is another major reason why I'm doing this. If my team members, my clinician friends, had a clear understanding that patients didn't want this — they would fight and advocate for that. And that would help [caregivers'] mental health and well-being, because they know that patients don't want this and they don't like being the ones doing it.

COVID showed a lot of people that if only we talked a lot about the what-ifs beforehand, we could have done a lot less damage to our clinical community than we did in forcing them to be in losing battles and situations that patients didn't want to be in anyway.