Interview: Sister Stephen, End of Life Nurse from “American Nurse”

Posted on May 21, 2014 at 8:00 am

Director Carolyn Jones told me that she learned more from Sister Stephen than anyone she has ever met. Sister Stephen is an end-of-life nurse featured in Jones’ documentary, The American Nurse. I also learned a great deal from her, even in a very brief interview.

What do you think that Carolyn Jones learned from you?

Well I think one of the things we talked about and she seem to really have some questions about is this whole thing about dying and how is it for these people at the end of their lives. What do you think is out there for them after they pass away? What are some of your beliefs about that? We talked about that and I think she saw also just being here how our residents really die with dignity and with the peace and the joy and the love surrounding them. That really that’s the way it should be if they all they pass on and I think that that was impressive. It wasn’t a negative experience for her at all.

She said you really bring the entire life cycle into the facility. Tell me why that’s important.

We’re so very fortunate that we are able to do that. We have animals here, we have children here. So there’s not the concept of when you go to the nursing home you’re just gonna sit and rot and die, nobody is gonna care about you and there is no life. I do believe that there is a lot of life here and that we do the best we can to make their last days feel full of life. Having animals and the children around, there is always something going on. We have grandchildren here all the time. Many of our residents are from rural areas and so they get to participate in feeding baby goats or going on hay rides. We do a lot of outings with them. There are children who come here from respite care to interact with them. They bring the residents outside, they bring the animals in to them, they play games with them. So it’s really not just sitting some place and meditating, they’re really involved and I think they feel that. We used to do a lot more activities in the evening, but by evening they want to just rest because their days are full, and they really want to participate in all of that.

What have you learnt from working with people at the end of their lives about the fears and regrets that they are experiencing.

One of my favorite parts of my nursing career is to be with residents at the end of life. One of them was quite a bit younger, he was a hospice resident and he had a battle with alcoholism and never believed in God. At the very end of his life, he did not want us to pray with him. He did say, “I deserve what I’m going to get.” It was kind of sad but we still tried telling him no matter what God loves you and He’s the Father, he’s the Good Shepherd, He’ll call you by name. I think we helped him the best we could and at least he was surrounded by love, he was surrounded by the spirit of God. I really believe that and the rest is up to God and him at that time. Most of our other residents are very ready to die, they’ve lived a full life and most of them are faith-built people and when they get to that age it is like, “I’m ready, let the Lord come and take me, the Lord can come and take me anytime, I’m ready.” It’s not the same when you’re taking care of someone that’s young and have a family. A very few of our people expressed regrets to me, very few. The big thing is the population we work with here is in a rural community I’m sure is different than somebody in a big city that has loss of contact with their children and they do feel alone and maybe part of the loss of contact with their family is something that they contributed to and they may have regrets but most of our people their families are close, they’re here with them when they are dying and in my experience you do not see a lot of that.

Even though the person who is dying may be ready, sometimes the family is not ready.

Exactly, exactly. I’ve gone through it twice with my own parents. They both died here. Both of them had dementia. My father was 71, my mother was 80, so he was a little bit younger. One of the things that was so helpful for me when my mother and dad were dying, and me being a nurse in geriatrics and long term care and seeing all of the many residents that have passed and work with families, I had kind of a difficult time at that point, being sure I was making the right decisions. My nurses were there to support me and help me. So that is what I try to be for the families. We sit down with them and it’s not always just me it’s often our social worker and our team that help them work that through. “What would your mom or dad really want?” Well they don’t want to be on life support. And are the decisions we are making what your parent or loved one would like or is it what you want to do because of your own guilt or comfort or whatever it might be? And it’s ok to let them go, that’s what they wanted. It’s ok not to send them to the hospital and pump IV’s and antibiotics if they are really ready and it’s nothing we can help…they’re not going to get better, they’re just going to be in discomfort.

What changes in the way we do health care in this country would be most beneficial to your work?

This sounds really, really kind of materialistic but I think with the elderly, I think reimbursement is a big issue. There’s still many more things that we would like to be able to do for our residents and have more time for them especially at that time with the families and reimbursement is a big issue. It’s a big issue on who we can actually take care of which is unfortunate. When we were a bigger congregation and we had most of our sisters we never looked at what the financial situation was unfortunately now we have to and that’s very bothersome to most of us.

Medicaid reimbursement is horrible and there’s some people you’d really like to help out but you can only do so much of that or you’re gonna sink. That’s one thing, the other thing I really think are some of the regular regulatory situation. And that’s getting better, I have to say it’ getting better but before when residents were at the end of life and I have to call the doctor regardless of what is happening or what the wishes are, you’ve got to call the doctor and many times if you get an on call physician and it’s like, “I’m not going to do anything unless you send them to the hospital.” They need to be evaluated and, they’re afraid of a lawsuit. Do we really have to be putting them through CAT scans and MRIs to save our butts? It’s not really for the betterment of the residents. It’s probably to save our butts or because of the regulatory issues.

Do you have a favorite bible verse that you like to share with people as they approach the end of their life?

One of them is The Good Shepherd. “I am the good shepherd and I know my sheep and I call each of them by name.” And I really feel, and I said to a women that was dying last night when I prayed with her and I said, it happened to be Good Shepherd Sunday in our church and I said, “Jesus said I’m the good shepherd, I know my sheep, my sheep know me and He will call you by name.” He will call you by name. And I guess that’s one of my very, very favorites.

What was it like to see the film about your work?

When you see the movie on big screen, I was telling my administrator about it this morning, she had tears in her eyes and I had tears in my eyes. It is phenomenal; it just really restores your hope. Sometimes you get in a little bit discouraged because there’s a staffing issue, there’s a financial issue, there’s a regulatory issue and sometimes you wonder what happened to what we really got into nursing for? And you see this and it just like restores your hope. Oh yeah, but there’s a lot we can do, there is many ways we can still serve.

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Interview

Interview: Carolyn Jones of “American Nurse”

Posted on May 19, 2014 at 8:00 am

“American Nurse” is a deeply moving documentary about the men and women who are, as the bumper sticker says, “patient people.” The film explores aging, war, poverty, and prisons through the work and lives of nurses. Jason Short drives up a rugged creek to reach a home-bound cancer patient in Appalachia. Tonia Faust runs a prison hospice program where inmates serving life sentences care for their fellow inmates as they’re dying. Naomi Cross coaches an ovarian cancer survivor through the Caesarean delivery of her son. Sister Stephen, a nun, runs a nursing home filled with goats, sheep, llamas and chickens, where the entire nursing staff comes together to sing for a dying resident. And Brian McMillion, an Army veteran and former medic, rehabilitates wounded soldiers returning from war. This film will touch, uplift, and inspire you. It was a great pleasure to speak with writer/director Carolyn Jones. I also spoke to Sister Stephen, and that interview will be published later this week.

Did this project start as a book?

Yes, it began as a book. I’ve actually published a number of books. And Living Proof: Courage in the Face of AIDS is probably the most similar for me kind of emotionally to this one, more so than any other project. I’ve really spent my career taking pictures and telling stories of people that I think are admirable, that I think we can learn something from, that we can be inspired by. I’m always eager to shine a light on those stories. So I was asked to do a book that celebrates nurses back in the end of 2011 by a global health care company came to me. They wanted to sponsor a project that would be a photo-journalistic study of nurses all across America and show the best nurses, meet the best nurses. It was a perfect sponsorship for someone like me. They had absolutely no editorial control and so it was kind of like a PBS sponsorship where they would just support the project and get behind what I was doing. I think they knew what kind of work I like to do so it was a really great match. Anyway it started off that way and I have to say as I travelled across the country my mind was completely transformed by the over one hundred nurses that I had the chance to photograph and interview. By the time I was two months into the project I knew this was an extraordinarily special group of people that I was going to want to get to know.

They’re really dealing everyday with this critical balance between being very caring and compassionate and yet holding on to some kind of sense of themselves where they don’t get washed away in it.

And that’s a very, very fine line to walk. I had no idea what nurses do. I mean zip! I had gone through chemotherapy with breast cancer and my nurse really got me through that on a personal level so I knew what that kind of nurse does. But I really knew nothing about the diversity and the depths of knowledge that nurses have and all the different things that they deal with so when that lid got blown off I was really struck. My first feeling was “Oh good heavens they’re all saints!’ and I honestly would talk to someone and just think, “You are just from a different planet than I am.” And it got very interesting: “Are you born like this? Are you born to be caring for your fellow man and completely non-judgmental?” They seemed to me, to be people that were just on a higher plane than the rest of us.

And then I kind of got comfortable and caught my stride and I realized that a lot of the qualities that nurses have are qualities that I believe as human beings are innate within us. I believe we will care for our neighbor for the most part and I believe we will help one another given a certain set of circumstances. So I started to get a little bit comfortable with it. Maybe somewhere within me I had some of the qualities that let me inhabit the same earth that they do. And then by the end of the project I was convinced they were saints and decided that they have a completely different DNA structure than I do! And I will never be anything like them, they’re incredible. Everything I want to be, everything that I think matters during life and at the end of life are things they think about and act upon everyday and just to be in their presence makes you a better human being.

Do you think that we as a culture do enough to support them, particularly with regard to the way that we structure health care?

No! I mean, not even close.

We’re so far off from understanding what nurses do and how they can contribute. We haven’t even begun to scratch the surface. We have got this group of people in this country that are non-political, can’t be bought, they see us holistically, they know how we suffer, they know what makes us healthy, they know where we find joy, they know how to make the hospitals run smoother, they know the full effect of war on our young men and women coming back from fighting, they know what poverty looks like, they know what working in the coal mines look like, they know what end of life is. They should be a part of every conversation, there should be always a nurse sitting at the table to remind us whatever choice we’re making, whether it’s about health care, going to war, food stamps, closing down a school, I don’t care what it is, they can tell us what effect this is going to have on our health and ultimately on our children.

And it’s critical that we stop and listen to them because we don’t have another group of people with this incredible treasure chest of knowledge. We don’t have them; there isn’t anybody else that we can turn to that is as, dare I say, pure and straight forward and non-judgmental and non-political as this group. They are capable of great things because they do have something innate that they are born with that make them different than the rest of us. But they are educated constantly to be non-judgmental, to look at things at face value, to accept everybody and try to understand the cause of someone’s behavior rather than just react to it. And it’s absolutely invaluable and I think this country needs them desperately and doctors are great, this is not a project that is trying to say nurses are great and doctors aren’t. That’s not my message at all.

We don’t know many things about our nurses and “Nurse Jackie” just doesn’t cut it. I’m a huge fan of Edie Falco. She’s brilliant and I wish she had lent herself to something else because it did a great disservice to nurses. I haven’t met a nurse in the last three years that had anything good to say about that. It’s not who they are. And I was lucky enough to meet some of the finest in this country.

How did you find the nurses you followed in the film?

First we would settle on a topic like returning war veterans and what the military had to say about what those women and men were facing. And so we went to the place in America that had more returning war veterans from Iraq and Afghanistan than any other place in the country. That was the VA Hospital in San Diego. Then we went to that hospital and asked them to nominate a few nurses that not only can speak to this issue but also represent the hospital really well, that are like the finest nurses in the industry. So that’s the way we functioned all across the country. We were able to meet nurses that were nominated by their peers and by their supervisors, and all of them are kind of the best of the nurses in that particular facility or place where we were. And so I say that because I’m not trying to say that all nurses are without fault either, they’re human just like the rest of us. But there are more great nurses than any other pocket of a profession that I have certainly encountered in my life and I’ve been interviewing and meeting people for over 25 years. This is an extraordinary group.

It reminds me a little bit of documentaries like “Twenty Feet from Stardom” or “Only The Strong Survive,” where we turn our focus to the people at the side and not the ones that usually get the leading role. Their job is to help other people.

I happen to love stories like that because you find the richness in life there. And you can do a deep dive in and find out makes things work and I love that. But I think in this case in the process of uncovering that I discovered that there is a reason that they don’t have a loud enough voice right now. We don’t know what they do, we have this preconceived notion of what nurses do and it involves holding hands and taking your temperature, and caring for people and being empathetic and all of those things.

We don’t realize how smart they are; we don’t realize the kind of education it takes to become a nurse and we don’t realize how they continue to educate themselves. I heard this so many times, they’ll get a patient who…it could be anything, a burn victim that is hurt in a different way that they didn’t encounter before. They dig in and find out how to help that person. And they get more certifications to be able to help the next person who is dealing with the same thing. That’s just the way their minds work. That’s why there are so many darn letters after all of their names. They have like this long list of number of letters, all of them. Half the time I couldn’t keep straight to who have what but that’s because they are so well educated and they continue to educate themselves because they’re driven by taking the knowledge that they had from the person that they just cared for and using it for the next person. And it’s remarkable.

And what do they do to keep from not falling apart over the tragedies they see around them all the time?

I was thinking, “Do you all get in your cars and drive for 45 minutes and sing Dionne Warwick songs or something to let it go?” But they all do different things. So for some of them there are groups of their colleagues in the hospitals, so there might be something that happens and they’re able to meet right after someone has died, and they can talk about it and kind of get beyond the moment by finding strength in others. Some of them actually do get in their cars and cry or sing or just try very hard to leave that moment behind them and drive home and then walk in the front door, take of their scrubs and make dinner for their families. That just blows my mind on so many levels, it’s incredible! And some of them aren’t able to cope, frankly. Some of them have a difficult time having personal relationships because it’s so hard to talk. Nobody wants to hear that stuff. Nobody wants to know what your day was like.

Naomi Cross is a Labor and Delivery nurse at John Hopkins and is also a Bereavement Counselor. So she’s the one helping moms when their babies don’t live. She’s married to this guy named Jason Cross. We should clone him because he’s so supportive and so aware of how important the work that Naomi does is. And he cooks and he’s there and that’s the way they solve it. They have a young boy who is just adorable, he’s in the film as well, and they kind of have found this balance in life so that she can get in the car and go home and walk through the door and leave it outside most of the time and just enjoy and build herself back up with the love of her family.

But it’s not easy and it takes a very, very special person to be married to a nurse because of what they go through in a day. The film takes us over the threshold into the patient’s room so that we can see them caring for other people. You actually see a baby come into this world and you see a prison nurse attending to a nasty wound on a man’s leg and you get a little glimpse, a little understanding of how dramatic and profound these moments can be that nurses go through. And a lot of the nurses who have seen the film have said things like: “I can’t wait to show my sister and my mother and my cousin or even my husband or my wife because now they’ll get it. Because there isn’t any way for us to understand. They put their hands inside our bodies, they deal with gruesome things and they’re fearless.

I’m going to speak to one of the nurses in the film, Sister Stephen.

Oh my gosh! Sister Stephen transformed me, I want to you to know. There is more life at Villa Lerado than any place I’ve been. I live in Manhattan and I think we very often spend time in the here and now. Oh come on…we all do right? We are very focus on right now and one of the things I think is wrong with the way we live, we’re so trying to hang on to our youth we’ve forgotten that there is a cycle to life, that we’re born and we die. And we try to stay young for so long.

Sister Stephen has the full cycle of life at Villa Laretto. She’s got all these animals that she uses as animal therapy. I’m not just talking about a couple of ducks. She’s got llamas and woodpeckers and monkeys and these animals all give birth and she brings those baby animals either into the facility herself and puts those little babies into the laps of the elderly or she puts the elderly in wheelchairs and takes them out to witness all those baby animals on the farm. And then on top of that this woman is a genius, she also brings in respite kids from the town, kids that have all kinds of different problems either developmental problems or problems at home. She brings them in and they help her care for the animals. And those young people relate to the elderly in such an extraordinarily beautiful way.

We need to be reminded that our time here is so precious. She reminded me of that. I think of her every day. She’s reminded me that we are born, it beautiful here, we are lucky to be here. We need to cherish it, we need to make the most of our time and then we leave. And that can either be a beautiful moment or a difficult moment but that’s the way it’s going to be for all of us. And I think she lives that every day. She taught me more in the amount of time that I have known her probably than anyone else in my life and she’s a very, very special human being.

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