Early access to advance care planning can be a stepping stone to greater health equity among underserved communities.
But an ethical and inclusive approach to goals-of-care is critical to reaching these populations, according to Nneka Sederstrom, co-founder and CEO of UzObi, Inc.
UzObi, an advance care planning tech startup, began operations in January 2022. The Minnesota-based company focuses on providing decision making tools designed to help patients’ make end-of-life care choices that reflect their own values.
UzObi launched a virtual platform in August that offers advance care planning support to patients, families and health care providers after receiving a $100,000 investment through the Northwestern Mutual’s Black Founder Accelerator program. The platform digitizes goals-of-care planning processes and offers one-on-one consultations with ethicists.
Hospice News recently sat down with Sederstrom to discuss how the company aims to fix the broken links that contribute to end-of-life care disparities.
What were some of the drivers that led to the launch of UzObi’s virtual-based advance care planning platform?
As a clinical ethicist for more than 20 years, I’ve been really engaged in end-of-life care in particular, with about 80% of my work life around death and dying — especially in ICU settings and critical care medicine.
Over the years, I have always asked the question, “Why can’t we do this better?,” and about 15 years ago or so I came up with an idea of improving how we engage in conversations around end-of-life care. How do we push to have advanced directives done sooner, better and more customized to what people actually need? I worked through that question in the hospital that I was working in then, and it was helpful, useful, and created a process for how I talked to families.
Fast forward to December of 2021 when my father died and the discussions around caring for him —what his life would be like; what was happening to his body; what my family knew about the kind of person that he was and what he valued; and what made him a unique individual — it was really clear to us that there were decisions that just weren’t going to fly. We were not going to make those choices. We were going to let him die peacefully in the way that he wanted to die.
That was the proverbial icing on the cake of my career of trying to figure out how to do this the right way. When I personally experienced his death and how peaceful and calming it was for my family, how we got the blessing of uncomplicated grief and no additional trauma, how we didn’t put him through anything that required suffering — all the things that we know families have to deal with that don’t get this opportunity.
That’s when I said enough is enough. My entire career and now personal experience can give insight on how this can be done better. That’s when I started UzObi, which means “heart of my father.” It’s dedicated to him and his life to help create opportunities for others to have those same meaningful experiences.
What are some of the key challenges that the platform is designed to address?
People don’t really get asked these questions if you look at standardized advanced directives out there right now. They are very generic and vague and don’t really capture what uniquely makes up a person. People don’t discuss these situations until it’s too late in the game, and there’s so many missed opportunities prior to that where we can design a better experience with health care for everyone.
UzObi offers a digitized system that allows you to put in your values, cultural beliefs and answer customized questions that create an understanding of what makes someone who they are, and what is important to them when they are thinking about a loss. What are those elements that impact how they view their medical decision-making and end-of-life care experience?
This digitized platform provides a medical, cultural and values blueprint that helps ask questions to give people the chance to decide what they want to focus on in that end-of-life moment, because we often change and evolve our advance directives and care plans. We want people to know that these are customizable at any point in time and you don’t have to follow a set of triggers. We should all have options to continue keeping what we value in the center as we move through life.
We designed an integrated, automated platform with the idea to digitize an advanced directive and put it into electronic medical records in a different way so that your blueprints are with you, your family or decision makers and doctors at any given moment in time.
Can you explain how this platform aims to help improve end-of-life experiences among underserved communities specifically?
We have questions around making decisions that equal “hospice” without saying “hospice” for people who misunderstand [the term], especially among populations of color.
People in these communities can get really fearful and scared when they hear that word and think it means we’re not going to do anything for their loved ones. Clinicians can even be morally distressed about the care they’re delivering when it’s time to stop aggressive treatments and start asking questions about quality at the end of life.
There’s a lot of re-education of what hospice is and how it offers comfort. The conversation tools address care management, care setting and questions around death, dying and what assistance is needed to make that a peaceful process. It’s eliminating the traumatic impact on the loved one left behind and doing it in a manner that allows people to make good choices through the right questions and information.
The number one area where there is struggle is around messaging on hospice in a timely manner, along with fears and anxiety that happens when it is brought up.
The better way to try to get people to understand that now is the time to transition to hospice is to use different phraseology in conversations around understanding who the person is and what they value. It requires being open and honest with families early enough so that they can start having those conversations sooner rather than later and giving more people time to back into them. This platform helps open up that dialogue so they don’t feel rushed or pushed into a decision.
Ethical decision-making was mentioned as a core element of the advance care planning services included in your platform. Can you tell me more about the significance of focusing on ethics in goals of care?
Clinical ethicists themselves are a rare commodity. In most hospitals, they have some sort of mechanism for dealing with ethics, but many places don’t have access to trained clinical ethicists.
There’s a lot of folks who get ethics added to their job title who aren’t really trained appropriately to do that work, which causes a lot of additional drama. Because of that, people have even more difficulties in having these conversations.
Ethicists are trained to address values from that perspective, and we’re trying to assist in having the conversations in a meaningful way and translating that into clinical language that nurses and physicians can work with and that families can understand. That’s the space ethicists live in. We translate a lot of these things into “doctor’s speak” in a meaningful way.
Asking these ethical questions, and having the output that physicians can work with has been really helpful. We created a consultation arm to allow for that, and for families or individuals to be able to have the consultation services with this rare commodity of a clinical ethicist.
If there’s a physician, a hospital system or a clinical practice that has end-of-life complications around a patient case, we have a HIPAA compliant portal that allows for ethical consultations virtually. We wanted to not just offer support to families in thinking about advanced care planning or other decision making, but also to provide clinicians with the opportunity as well to get the help and support they need to take care of their patients. Second opinions from other ethicists are also available, because there may be nuances that another person is more familiar with, or has had more experience in.
We need to get to a point where we’re having these conversations so that all loved ones have to do is focus on caring and loving that person because we’ve taken the burden of decisions off of their shoulders.
How have things evolved since the company’s launch earlier this year? What are some of your long-term growth initiatives?
Right now we have on our website the blueprints that anyone can access. We also have access to clinical ethicists like myself if you want to have a one-on-one discussion while you fill out your blueprint, or if you want to talk about your unique medical situation with a clinical ethicist to help you make good decisions on what that trajectory looks like.
All that is available right now, and we are developing the integration platform so that when you make changes or updates, it sends automated notifications. Right now, it’s a manual process. We’re creating the automation part of that right now so that the future is not only an automated and integrated process with the electronic medical record, but will also even be customizable for patients to talk about unique situations, not just around end-of-life care.
Individuals will have access to it on their own, or they will access it through their health insurance company covering it, or through their doctor’s portal. There will be all these other avenues to make sure that they feel supported in making these decisions and people who are there to help are also really clued into it. We’re always looking for educators, health care providers and professionals to partner with.
That’s what we’re funding now, getting integrated in the system. A lot of people are working backwards by integrating it into the health system based off of a different design.
It’s going to take time, but this will hopefully be a digital blueprint for making difficult, ethical medical decisions and bringing them peace.