A Nurse's Personal Story About End-Of-Life, Jillian Alexander Ep. 4

A Life & Death Conversation with Dr. Bob Uslander

A long-time nurse shares her personal story about her father's end-of-life experience. Hear what the aid-in-dying process was like for her and her family. Transcript

Dr. Bob: The person I'm going to introduce you to today and have a conversation with is a woman who I haven't known very long but in the short time that we have known each other we've become very close friends and co-creators on this journey around exploring how to make the best out of life and helping to support people through complex illnesses and approaching the end of life.

Her name is Jillian Alexander and I'm just going to tell you a little bit about Jillian and then I'm going to turn it over and let Jillian tell you more about herself. I think it'll be a fascinating discussion. Jillian has an amount of experience both from a professional standpoint and from a personal standpoint. We've had many conversations and I'm excited to introduce her to you. Before I go on and talk a little bit more about you, Jillian, why don't you just say hello?

Jillian: Hello Dr. Bob, nice to talk to you.

Dr. Bob: It's wonderful. Thank you so much for taking time to be with me. Jillian is a nurse, she's a registered nurse and has been for 35 years though if you look at her you would think that she actually finished nursing school when she was eight, so it's hard to believe that. She's been a registered nurse and has worked in both pediatric intensive care units and neonatal intensive care units, so a lot of her clinical work has been in the pediatric setting.

In 2012, she completed a Master's of Science in nursing and she specialized in education. Now, she's doing a lot of educating of other nurses in obstetrics and pediatrics. Her personal experience with supporting people has been like many of us in the healthcare profession, we take care of anybody who asks us to and especially family members. Eight years ago Jillian's sister, Lauren, her younger sister was diagnosed with ovarian cancer and at that point Jillian took a leave from her job and spent three months with her sister when she underwent surgery with a port placed in her abdominal cavity so that they could administer chemotherapy directly into the area where the cancer was.

She went to all of her sister's treatments and after that, her sister actually did really well, Lauren did well and had five years during which time she was in remission. But in 2014 the ovarian cancer returned and they started together as a family looking at treatment options, doing a lot of research, looking into clinical trials, traveling. Lauren was blessed to have fairly extensive resources available to her so she was really able to find the best care that was available at the time. Despite that, the cancer continued to spread and in 2016 it became apparent that the treatments were not effective, she was getting extremely weak, and having issues with bowel obstructions. That’s about the time that I was brought into the picture, so this was late in 2016.

Jillian continued to live in the San Diego area, taking an extensive leave from her career, from the family that she had out there, and was an amazing advocate for her sister, to try to give her the best possible quality of life and support during what she knew to be the final phase of Lauren's life. Lauren passed away, I believe it was in January 2017, is that correct?

Jillian: Correct.

Dr. Bob: It was truly an incredible experience to be a) working that closely with Lauren and support her, but I was completely blown away and amazed by the level of commitment that Jillian showed by her sensitivity. We created something almost like a little hospital/hospice setting and we were able to give Lauren a very beautiful and very supportive environment for the final weeks, months of her life.

Since that time Jillian’s her life has taken a completely different turn and I'm going to turn it over now and I'm going to allow Jillian to talk a little bit about what that experience was like and what's happened in her life since then. Jillian, a) thank you for being my friend, b) thank you for what you bring to people, and c) let's hear what's been happening for you.

Jillian: Thank you, Dr. Bob. That was really sweet. The first thing I really want to say is that, even though I had been a nurse for 35 years, I really didn't know what to do to help my sister. She was so ill, she had a couple of extensive stays in the hospital where they would do another CAT scan and ended up putting a port into her lungs because they had to drain fluid from her lungs every day so she could breathe. I was really struggling to find her palliative care. I didn't really know exactly what it was and my sister was a real fighter. She didn't want to hear and she would say, "I hope they don't give me my hospice card this time." The “H” word was a bad word and so I didn't know what to do because outside of hospice how do I find someone to help me?

I started searching and I had a friend, who happens to be a palliative care physician, who said, "They have to have palliative care, ask them." I started asking her oncologist to get me palliative care and they set me up for an appointment. But it was three weeks away and my sister was so sick, and I didn't know what to do to help her because she couldn't be at home in her condition without, like Bob said, a hospital type room in her home. I wanted her to be at home and she wanted to be at home. When they gave me Dr. Bob's phone number and I had the first conversation with him, I knew right away I had found the right person.

I can't explain how desperate I was and how many dead ends I was facing when I tried to advocate for my sister even something as simple as helping control her pain. Because she had a bowel obstruction, she couldn't take medicine by mouth, and I knew that a fentanyl patch would help her, but the oncologist said she had to be in hospice to get a fentanyl patch. I said, "Well, why?" I couldn't get her the help. When I finally met Dr. Bob, within 24 hours we had her at home, on a fentanyl patch, with IV medication to control her pain when that didn't work, and everything we needed to keep her comfortable. Every medication and it changed everything from this aura of suffering and fear to there's somebody here that's going to help us go through the next phase of our journey.

Finally, someone ... Honestly, Dr. Bob, you were the first one who said to my sister, "You're too sick to have treatment. Maybe if you get stronger,…” because she just wanted treatment, treatment, treatment, and nobody said that to her. Nobody said you can't have treatment; it was a relief to stop trying to find treatment somewhere. She was ready to go to Mexico and try anything she could because, like you said, she had the resources and the fight in her to try to stay alive. But you can't always win. Sometimes you're going to cause more suffering than you need to and that's where you helped us to make a bridge, so to speak, for that next experience, and made it palatable, and made her understand and accept what was going to happen.

Dr. Bob:

Jillian: It really was beautiful.

Dr. Bob: From my perspective, I didn't know her that well, and we just met, and it was a really challenging. It was challenging on many levels but, knowing what a fighter she was and hearing from everybody and her husband who would not hear anything other than full charge, whatever it takes we're going to do it and we were not going to quit. I don't think we mentioned how old she was at the time. She was very young, she was 53, is that-

Jillian: Mm-hmm (affirmative).

Dr. Bob: I knew that she wasn't ready to just throw in the towel, but I think as we discussed the best approach we had to keep hope alive for her that there was a possibility that she could resume treatment at some time so we never ... I wouldn't say no treatment is going to help you. It was really no treatment is going to help you right now and it's likely to harm you. Now, the focus is on finding a way to be comfortable, to build yourself back up if that is possible, and we'll do everything we can to keep that possibility open. She was incredible. She had a naturopath coming in, she was getting infusions of amino acids and other types of supplements that would be beneficial. She had a masseuse coming in and helping to keep her muscles relaxed and she had a team.

You were a major part of building this team, but I think what you are lacking and what I was able to come in and provide was a leader of the team, a captain of the ship, to help coordinate all the things that needed to be put in place and keep you and the family from being so incredibly overwhelmed. It was a gift for me and you stepped up like nobody I've ever seen. An incredible champion for her in an incredibly complicated environment. You were my teacher as well and I think.

Jillian: I think what I would say about that is sometimes you have to meet patients where they are. It's not about you; it's about the patient and, even though I would've dealt with it differently because I know so much and I knew what was happening, we really tried to meet her where she was. She knew she was dying; she would say little things like, "I don't want a funeral,”—just blurt it out all of a sudden—or other things that she would want to happen if she died. She told me her dying wishes for her siblings and family members, but she didn't want to accept it and actually was taking a medication up until two days before she died that was maybe going to help her. I supported her in that too because I felt it was her journey and her decision to try as hard as she felt she wanted to try.

Dr. Bob: Yeah, and she wasn't doing it for herself. She was doing it for her family because she had children, the youngest of which was 12, and leaving him was the main thing that was causing her so much angst. We weighed that when we looked at the pros and cons of that medication. We all came together and we felt like, well, this is a medicine that's probably not going to cause much harm. It's unlikely to provide many benefits, but emotionally, psychologically there was value in it for her.

Jillian: Right. I actually felt like the medication might cause her harm but that it was still her decision to try to take it if she wanted.

Dr. Bob: If it's okay to mention—one of her wishes, before she died, was to see you married, right?

Jillian: Mm-hmm (affirmative).

Dr. Bob: This was a pretty special moment because ... Is it okay if we share that?

Jillian: Yes.

Dr. Bob: Jillian had been divorced for some time and she had a man in her life who she was anticipating marrying at some point, but Lauren, she wanted to see her sister married and she didn't want to miss that. Literally a week before she died, she coordinated the family to come together at the home and was able to see Jillian and her husband share their vows and get married, which was just an incredibly beautiful experience and I was honored to be part of it.

Jillian: You were the minister. You said, "And the power invested in me by Lauren," but she had been so sick I didn't know if she was going to be well enough to be participating. But she had this rejuvenation and had more energy than I'd seen her have in probably two weeks. Stayed up for four hours, and had a smile on her face all night, and was so happy. I'm not really sure why that was so, so important to her. I think she wanted my family, my mother, my siblings, my children to love my husband as much as she had come to love him.

I think she wanted them to accept him and I think she wanted to thank him because he also had come to San Diego and was doing whatever she needed because that's the kind of person he is and she had just fallen in love with him. It was really amazing. It was New Year's Eve and I remember saying to her, "Why don't you want a normal dying wish? Like having Bon Jovi come to your house or something?" I was a little uncomfortable with all of the attention but it really was a beautiful night and I think any of us who were there will never forget how special it was.

Dr. Bob: That's for sure. I will never forget it. She did, she rallied, and she was beautiful and radiant, and it was, I think this final celebration that she was able to create and make incredibly meaningful. Then she, like we said, she died less than a week later. You were with her there, supporting her in her last moments. Let's talk a little bit about what's happened for you since that time. Out of this tragedy that was able to ultimately be a beautiful and peaceful end-of-life experience, what's happened for you since then?

Jillian: After that happened I think that what came together for me was the challenge of finding you and finding a way to give my sister a peaceful death at home. It started to really bother me that people were dying in hospitals and ICUs, and families were being asked silly questions like, "Do you want us to do everything with your 85-year-old mother who has pneumonia," and people were dying on ventilators. It really started bothering me that we weren't allowing people to be at home. I did a lot of reading and I thought, "I think that this is really what I want to do. I want to help people at the end of their life," because being at the end of your life and having a peaceful death and exit from life is as important as being born, which is where I practice on the other end of my spectrum.

I do obstetric clinicals and I take nursing students to see deliveries of new babies. I feel like entering the world and exiting the world are both equally important and we are not doing a good job at helping people exit the world because our education with nurses and doctors is focused on not letting people die and keeping people alive rather than the inevitable. Since everybody's going to die, we need to spend a little time thinking about how that should happen and how we might want it to happen for ourselves. I'm getting my advanced practice degree in palliative care and that's what I really want to focus my career on because it's so important. I'm trying to get it embedded into nursing curriculums so that nurses learn about palliative care and how to get those resources at the end of life and don't have to feel so alone the way that I did when my sister was so sick.

Dr. Bob: I think that's so beautiful and I know that Lauren is proud that her experience has motivated you to follow this passion, to follow this guidance, and put yourself in a position to be able to truly help people who are so desperate for the kind of support that you're talking about. I'm thrilled that someone like you —because I've seen your dedication, a senior level of commitment—is going to be entering this field to be furthering the mission and furthering their education of the next wave, the next generation of nurses and doctors. Good on you.

Jillian: Thank you.

Dr. Bob: You shared with me you have some other personal experience prior to what you went through with Lauren and I wanted to just ask you if you would share it. because I think it was a poignant story and it brings up a lot of the issues that we're still facing in most of the country with respect to helping to honor people's wishes at the end of life. There are now a few states including California that allow physician aid in dying for people who are competent and terminal, but the majority of the country is still without that support and the laws that allow that. You shared with me a bit about an experience with your father that highlights the challenges that come when somebody knows that they're dying and doesn't want to allow the condition to decimate their body and take them down the way that it usually does. Can you share a little bit about that experience with your father?

Jillian: Sure. In 2000 my father was 71-years-old and I was living on the East Coast. He was living in California and he got sick, really sick and he was told that he had some type of problem with his liver but that he could get a liver transplant. My dad told me, "I think I'm going to be okay but I might need a liver transplant." The liver transplant is a huge operation especially for someone who's 71 years old. I hadn't seen him but was planning to go see him and my mom called and said, "He's so sick; I need you to come home right now." She was really freaked out and so I flew home that night and when I saw my dad he was extremely jaundiced and I knew he was sick.

It was a Friday night that I got home and I was just really shocked. He had lost maybe 15 pounds in a couple of months since I'd seen him. His skin was bright he was weak. He had a lot of his medical records there, and I started reading them on Saturday. I thought, "Oh my gosh!” He had a very elevated liver tumor marker, alpha-fetoprotein levels. Back then, Web MD was a little bit newer and Dr. G. wasn't as advanced as he is now, but I could tell that it looked like my dad had liver cancer and so I decided that we needed to take him to UCLA where he was being treated.

I called to get him admitted through a friend of mine that worked there. She said, "Sure. Come on in." I was getting my dad ready to go and she called me back and said the liver surgeon on call wanted to talk to me. I said, "Absolutely," and when I talked to him he said, "Your dad has hepatic cellular cancer," which is liver cancer, which is really bad. I knew it was really bad but I didn't know how bad. I said, "Well, what are we going to do? How can we treat it?" Imagining my dad was going to get chemotherapy or whatever they do for these bad cancers. But he said, "There's really nothing we can do and I don't really think your dad will even live for two weeks." I was shocked and I said, "What are you talking about?" That's a whole long story, but the point is that we stayed in town, my dad had a liver biopsy, and we found out that he, in fact, did have liver cancer.

When I found out my dad had liver cancer from the doctor at UCLA it was a Sunday and it happened to be Father's Day but the doctor told me my dad only had 10 days to two weeks to live and I thought, Well, I have to tell my dad right away. He hardly has any time left if this doctor is right and he deserves to know.” On Father's Day, I told my dad I had bad news for him and it looked like he had liver cancer and there wasn't anything they could do to treat it. My dad got the biopsy and when he saw that valid and true he was so brave and he said, “Well, Jillian, not very many people get to know when they're going to die and how they're going to die.”

He privately told me, "I don't want to be alive in a coma for five or six days. Will you help me?" He was too weak and too tired to do it himself. He asked me to help him get a lethal dose of medication so that he could take it when the time was right. He said, "I don't want you to feel guilty and if you don't want to do it I understand." Of course, I wanted to do it, it was my dad. I would feel the same way, but in 2000 this was not legal in California so I talked to an oncologist and I found out what he told me would be a lethal dose of an opiate and basically an anti-seizure medication.

He told me how it would work. I discussed it with my dad, we got the medication in an elixir form, and it was about two ounces, and we put it in an unlabeled container vial by his bed. I didn't feel bad about it at all. I just wanted to make sure that my dad would know when to take it or that he wouldn't suffer, that I wouldn't have to make those decisions, and he kept telling me, "Don't worry, I'll know when to take it." One morning when I woke up he had been really sick the night before and every morning I would open the door and see if the medicine was there, open the drawer and see if the medicine was there. One morning when I opened the drawer the medicine wasn't there and I knew he had taken it.

Other people in my family didn't know because my dad didn't want them to know. It was a really personal decision for him. He asked me because I'm was a nurse and he knew I could figure it out but I wanted to honor him. He didn't want my mom, for example, to know that that was what he did. He just wanted to spare himself and her really the suffering of being in a coma and all of the things that go along with that. He died at the end of that day.

He died not as quickly as I would've liked. I kept thinking, "I wish I had an IV of Valium or something to help him," because he was struggling and it was really, really hard. I didn't have you then and I didn't have the medicine then. It was a little more drawn-out than we probably would've liked but I was with him when he passed and it's similar to when my sister passed. I felt this amazing energy of almost like his body floating across the room. I knew when his spirit left his body if that makes sense. He wasn't dead yet and neither was my sister in that their heart was still beating, but I knew they weren't there anymore.

Those are the two most personal experiences I've had, but I have had to be with children and babies and families as they died and there is something very spiritual and magical that happens especially when someone isn't suffering and all of those horrible things, choking and dying in that really difficult way. Everybody's going to die someday. I think you just need, depending on if you have a difficult diagnosis, what you're comfortable with. As palliative care professionals and patient advocates, we need to support patients wherever they are on that spectrum and we need to work to make sure that what is legal to do in California is legal to do in other states or make it easier for people who have that option to choose it. People do choose it in other ways. People literally blow their heads off to stop their suffering or to prevent suffering, and it doesn't have to be that way or I don't believe it should have to be that way is my personal belief.

Dr. Bob: As you know, that's my personal belief and I completely agree. We hear about it people are finding more violent and, unfortunately, ineffective ways to try to end their suffering. Taking overdoses and things that just end up creating more trauma, and more struggle, and guilt for the family.

Jillian, thank you so much for sharing that incredibly personal story. Your dad was a physician, right? so he knew what he was facing. I believe that he gave everybody a gift by making that decision. I just want to say I think you're an amazing human being and one of the most compassionate and sensitive people I've ever met. I do believe that we will have many opportunities to collaborate and to work together in support of progress in this arena, and supporting people through challenging illnesses, and having a more peaceful and beautiful end-of-life because it is possible. I truly believe that everybody can have a peaceful and dignified death. We are part of the answer and part of the tribe of people who are working towards making that possible for more people and raising awareness around that. Thank you for being part of the tribe.

Dr. Bob: I think this has been a wonderful episode and I'm sure that many people have been touched deeply and learned some really valuable things. Anything that you would like to say in closing before we finish up?

Jillian: I think I would just like to say that there are some really wonderful resources and books that are important for people to read whether they're healthy and young or they have an illness because it isn't something that you want to give no thought to until you're put into the position of needing something. You want to think about it and have conversations with your loved ones. I would say that 'Being Mortal' by Atul Gawande is a wonderful book about life and death. He also describes his personal experiences with his parents and as a physician. On the Internet [Andre-as Val-an-dez 34:26 has a YouTube called 'The Conversation', which talks about having those conversations with your parents, with people that are older in your life so that you know how to support them and what they want. What you'll find when you do have those conversations is nobody really wants to die on a ventilator, unconscious, in a hospital. People don't choose that. People end up getting that because doctors are like I said, so much better at keeping you alive than they are at allowing you to die.

The other thing that I would recommend is 'Extremis,' which is a short documentary, which really shows what end-of-life can really be when you are in a hospital and intensive care situation. There's also an article called 'At His Own Wake, Celebrating Life and the Gift of Death,' which is in [The New York Times, which is a beautiful article. I can send you the links to all of those so you can post them on your website if you like.

Dr. Bob: Absolutely.

Jillian: They're just some nice things for anybody to read and be aware of because the fact of the matter is we're all going to die someday, no one's gotten out of it yet. You have opportunities to be proactive but you need to have conversations with people so people know what you want.

Dr. Bob: Awesome. That's wonderful. Thank you. Those recommendations, resources we will have available on our website as well. Just having shared that information for those who follow-up and access those resources it can have a profound impact so you're continuing your beautiful work and supporting people. Again, I want to thank you for taking the time and sharing so deeply from your heart. I'm so glad that you and I met. I am forever grateful to Lauren for allowing me in her world and being part of the team and to you for being such an incredible partner in that and for everything that you're doing and will do. Thank you, Jillian, and hopefully, we will have an opportunity to have you back on here and explore more of what's happened along your journey.

Jillian: Thank you. It's awesome to be working with you, Dr. Bob, and to have somebody who's brave enough to advocate for patients and to allow what's legal in California to happen because a lot of people it's too controversial for them to want to touch and that's not helping the people who would like to have access to these legal remedies. I commend you for your work and, if it weren't for people who are willing to stand up in tough times, things would never change and I think that we really need to change how we're letting people die in our great country.

Dr. Bob: You're doing it; you're not just talking about it, you're doing it. All right, you take care and we'll talk soon.