Life Matters Media
Quality of life at the end of life

Meet Our Donors: Darren Henson

A Proven Leader with Heart and Soul

Empowered life choices. End of life quality. We foster a greater understanding of the capacity that end of  life decisions have to nurture the human spirit.

Darren Henson serves as System Vice President of Mission and Discernment at Presence Health in Chicago. A strategic leader with unique competencies in ethics and theology, Henson is a trusted advocate for patients and clinicians. We are honored to count Henson as a friend, supporter and role model.

What inspired you to support Life Matters Media?

I very much appreciate the effort that Life Matters Media is putting forward to educate, at the grassroots level, people on the importance of having conversations with their loved ones about their end of life care wishes.

I think the average person needs help, some sort of tool to help them have these conversations. Life Matters Media very capably and helpfully provides for people.

We are sad to hear that your mother, Rosemary Henson, recently died from complications associated with multiple sclerosis. We are thankful she had a comfortable end of life experience.

It was actually a really great experience for my mom. I am really pleased that we were able to have my mom followed by an outpatient palliative care team for well over two years. It is amazing that this was available in Topeka, Kansas.

Through an outpatient palliative care clinic, my mom was able to develop a relationship with a remarkable team of a physician and his advanced nurse practitioners. The nurse practitioners, in particular, were able to visit my mom in her home several times a year so they could develop a relationship with her.

This winter, when we were just beginning to notice a few signs physically and emotionally with my mom, we saw that it was time to initiate a conversation with mom about hospice. Because she had a relationship built with this care team, it ended up being a very smooth and easy transition.

My mom worked in health care. She knew what she wanted — and even more so very clearly what she did not want. Mom, for years, was very steadfast in saying what she did not want.

She made it very clear when the palliative care team asked her if something serious were to happen would she want to go to the hospital? She very clearly did not want to be hospitalized.

Her palliative care team, having that information, helped write a physician’s order not to hospitalize.

Her actual dying process was quite smooth.

Despite her advanced illness and chronic conditions, I cannot even remember the last time she was hospitalized. It was several years ago. I think that is due largely to the conversations we were able to have over the years.

We were really clear advocates for her.

Do you think most Americans will experience such a smooth transition?

I hope so. But at the same time, it really does require a confident advocate.

We never had to use my mom’s advance directives because she, up until the very last hours, was decisional. But when someone is frail and elderly, it is hard to really clearly continue to advocate for him or herself.

There were a couple of moments when it appeared mom may need to go to the hospital, there were signs at times when an infection was beginning to take its course. There were some health care practitioners who were beginning to think that maybe she needed to be hospitalized.

This was before they had the chance to call her palliative care team. I had to make it really clear to them that they needed to triple-check her records, because there were physician orders to the contrary.

Even though we had the physician order, even though it was in her record, there were times when the particular nurse or person in charge of her care for that night maybe was not completely cognizant and was simply following what they assumed would or should be normal protocol.

I had to make it very clear to them that they ought not to do that and that they needed to call her palliative care team and call me.

So, do I think more Americans will have the experience that my mom had? I very much hope so, but I think it will require even more people willing to be active advocates for their loved ones. They may at times need to stand up to medical professionals who need to hear repeatedly what this patient in this circumstance needs and wants.

Health care practitioners are seeing dozens, hundreds of people in their care and it is reasonable to understand that they do not always know the particular wishes of every patient. They are so bombarded and overloaded by many things. It might be very easy for a practitioner or a physician to do what they perceive to be the standard protocol. They are trained to think and see that they can and ought and even must save peoples’ lives.

Have you spoke with loved ones about your future health care wishes?

I am starting to more and more.

The focus of my recent history has been on my parents. With my mom’s passing, 21 months after my father’s passing, I am beginning to focus on my own situation and use their experiences as kind of a jumping off platform for those conversations with people close to me.

Is talk about death and dying still taboo?

I think there are some breaks in the ground. The ground is beginning to get tilled a little bit. At the same time, it is really, really difficult for caregivers and some health care professionals.

You work for a Catholic health care system. You are a theologian. How has your faith shaped your view of health care?

My own understanding of the care that I want to receive, the care that my parents wanted to receive, is very much at the core what in theology we would call a Christian anthropology.

It is the view that the human person has an inviolable, innate human dignity. It is a dignity assigned to it that deserves and demands our respect and our reverence. We want to do things that are meaningful to each individual.

Something that was important to my mom, for example, was the way she was dressed and regularly bathed and regularly groomed. By having her regular bathing schedule, she had something she could rely on and look forward to every day. It was important to tell her that she is valued and that we are here to maintain her dignity.

In Christian anthropology, mortality is presumed. Mortality is expected. It is something filled with grace. Death is an opportunity for eternal union with God. It is not something that we are to intentionally hasten, but it is something that we at some point have to give ourselves over to.

It is not something we must fear, but it is something that can be filled with grace and beauty.