Table 3:

Delivery of High-Quality Palliative Care

Honoring and Advocating for Patients’ Wishes	“we were able to get him to a rangers game and meet his favorite hockey player - go in the locker room wear a signed jersey and ride the Zamboni on the ice- it was very special to watch” (2a) “the memory is so meaningful to me because it makes me feel good to do good - to help in anyway i can. having him be able to attend the wedding with minimal effects of chemo seems small but knowing he was able to enjoy is a great feeling.” (6b) “Being truthful with family when the doctors are continuing to not paint a clear picture of possible outcomes.” (26b) “I’m passionate about doing whatever i can to achieve a “good death” for my patients, that honors their values and personalities.” (31c) “Despite the public venue, and just meeting the patient for the first time, I embarked on the critical conversation of end-of-life care. It was brought to my attention that the woman historically had not wanted to talk about this topic, nor did she talk about it with her husband, who was at chairside. However, on this day that I brought it up, she was ready to talk about it, and wanted to sign up. Her only condition, was that she needed to sign up tomorrow, because tonight was her son’s wedding.” (32a) “Even after caring for this patient for past 2 years, I have to remind myself of how he likes to receive the news, good or bad regarding his cancer.” (51b) “Turned out that he did not want to continue fighting. All he wanted was to live long enough to meet his son. And relocate to be close to their families. The oncology team and palliative team worked together to arrange transportation via train. Patient’s oncologist contacted the new oncology team to brief the patient’s case. Then one day, he and his pregnant wife came into the infusion clinic for the sole purpose to say their thanks and say goodbyes. They made a special effort to make this happen. By this time of his battle, he was very debilitated. He and his wife relocated and he was able to meet his son.” (56a) “I had a 78 yr old patient with TP53 mutated AML The prognosis for these patients is poor. We were able to get her into remission but she relapsed within 6 months after treatment. We attempted another therapy and a clinical trial but she progressed very quickly. She told me that she only wanted to make it to her high school reunion. We were able to do so and not long after she returned, approximately a month later she died.” (60a) “it was so meaningful because being able to get her well enough to make this goal and honor her wish gives me a sense of meaning. This sticks with me at all times.” (60b) “I try to find out what are attainable goals I can assist all my patients with and try to meet them to my best ability.” (60c) “Recently, I had a goals of care conversation with a pancreatic cancer patient and her caregivers. I knew that her goal of treatment was to be able to meet her new grandson. He was born and she was able to hold and bond with him. She was declining further treatment. Readdressing goals was important as she was declining quickly. She chose hospice that day. The conversation was incredibly sad and at times I had tears in my eyes. I felt that I was able to make a difference for her and her family that day.” (63a) “This was a lovely human I was privileged to care for. It was meaningful to me to be able to be the one to help her make her final choice regarding her goals of care. That day she was suffering with her symptoms. I listened to her and allowed her and her loved ones to make the decision to choose quality over quantity. She enrolled with hospice the next day and was comfortable at home when she passed a week later.” (63b)
Deep Human Connections	“The bond we developed despite our despite our age culture and socioeconomic background.” (16b) “It was the connection and openness he had to share about his life. To get to know him early in the process and be there for him as his disease progressed. To feel like I could help him even in the small aspects of his care was so fulfilling.” (20b) “Her oncologist did a wonderful job of thoughtfully approaching her care, taking her personal and cultural factors into account. Her visits with me became an opportunity for her to open up about her ability to cope, her social-emotional needs and her quality of life on treatment. Her oncologist and I were able to collaborate in a way that really optimized her care. Also, she was just so incredibly gracious and grateful. Sometimes we struggled to communicate because of language barrier limitations, but this did not prevent us from being able to connect in a meaningful way that she found helpful.” (29b) “I learned how valuable it is to give time and space for people to open up; that what is gained from that gives me more personal satisfaction from my work than anything else.” (29c) “I cared for a young woman with multiple myeloma at a county hospital for a number of years. She had excellent insurance and had undergone bone marrow transplant at a local hospital that had a religious affiliation. She and her partner had been mistreated due to their gay lifestyle. I cared for Glennis for years with multiples lines of therapy, unfortunately she died on Christmas Day in the hospital with her partner next to her where she had been through her entire cancer diagnosis. I had never witnessed such love and dedication between two people.” (62a) “I watched the patient go from a young man with a job and a girlfriend to a young man dying of a terminal cancer. His name was Richard. I saw how cancer changed him over time but his spirit remained intact. I saw him have to stop working as a bank teller, his girlfriend breaking up with him and him becoming more dependent on his family. I saw his mom lose a son and the pain she went through seeing him lose his appetite and his abilities to walk and care for himself.” (61a)
Satisfaction and Meaning in Providing Quality Palliative Care	“I approach each patient with the mindset that I may not be able to “fix: everything but I can do everything in my power to make their day a little better - for them to know there is someone who genuinely cares about them.” (3c) “She helped show me how big of a difference I can make in others’ lives.” (14c) “I try to always care for those in a manner that I want to be cared for. You never know the ripple effect of your care.” (27c) “Because i felt like I was able to being him a small moment of joy.” (28b) “I was able to participate in her care for a few years, and it was memorable because of the connection I was able to make with her which seemed to really make a difference in her experience. She had moved to Southern California from Japan fairly recently at the time of her relapse, and was socially isolated for the most part with many cultural barriers in making connections locally. The extra time I was able to take with her to build trust and give her a safe space to express her needs and feelings allowed me to give her a lot of much needed support. I remember that she would always say that she felt better after a visit with me, and thanked me in a way that felt so genuine.” (29a) “In her final days, she asked her sister to call me and ask me to come and see her at her home to visit. I did. We had the most beautiful visit. When I was getting ready to leave, she asked me “How do I do this?” ....I said...“Steph, you just have to know, you have done your job here. You have an amazing family and children that you have raised to be independent and secure that love unconditionally, you have left an imprint of your spirit on all those you have touched throughout your legacy and you will be ok and so will they.” She passed 18 hours later with her family by her side.” (30a) “It shows me that I have an individual impact on everyone I care for, and it is my job to make it be meaningful.” (30c) “The attending oncologist was very grateful that I had the discussion with the patient. I was proud of myself for having the courage. The patient lived for two months :,)” (32b) “At the beginning of the visit she was taking her emotions out on me but I remained calm, apologetic and provided active listening and empathy. She was in a different state of mind by the end of the visit and appreciative for my listening and she apologized to me which I told her was not necessarily due to I could not imagine what she was feeling and going through. I got the social worker to check i with her regarding FMLA and stress. I consulted with palliative care, who she was waiting another few weeks to see and I started her on some medications to help manage her pain and insomnia which were really bothersome to her. I felt glad she was seeing me that day because I think I helped her in several ways.” (33a) “when he was towards the end of life, we encouraged the family to have their son pass in our serenity room where friends and family could visit. Where the family could sleep in the room with him, but allow our nurses to care of him when they were tired. We talked through every step with them as he was slowing moving on from this life. When he passed away, the family let us know that this experience was great because we were able to think of and plan for things, they didn’t even know they wanted or needed. Like a fan blowing on his face to help with air. Or after the patient passing, offering to walk the dog that we snuck in so they can stay his body. It is strange how they were able to be prepared for every clinic visit with all the latest data, but no amount of research could prepare them for losing their child, which we had the expertise, unfortunately.” (35a) “I believe caring for this patient influenced my nursing career in many ways. I became curious and interested in learning about end of life care and learned as much as possible from our palliative care nurse practitioner while working in the ICU. While I was in graduate school, I helped develop and teach an end of life simulation for nursing students. One of my passions is to help patients at the end of life and help nurses become comfortable with this role when traditionally there is not much training on end of life care.” (37c) “This patient has helped validate that what we do on a daily basis helps make a difference in people’s lives.” (38c) “a 50 yo gentleman what had full cardiac arrest twice and was incubated who became alert enough to inform his children to continue his wish to remain full code. Children said although that was not what they wanted for him or for themselves, they would honor his wishes. That gave them peace when he eventually died months later, that he died on his own terms.” (40a) “When I am having a bad day, I still try to be grateful for everything that I have. I try to go out of my way to make patients’ experiences as seamless and streamline as possible. Patients have lives outside of the hospital. They need to live life. It might be basic, but just making sure the order or appointments makes sense or combining appointments to avoid patients coming in multiple days in a row. I make an effort to give patients in any way possible a pleasant experience while being a place they might not want to be. It’s the little things that add up to make a big difference.” (69c)
Experiencing Empathy	“the patients we see are more than just patients – they’re husbands, wives, children, sisters, brothers... caring for their disease is one thing but caring for the whole person adds a very fulfilling element.” (6c) “He could be my child!!! My heart ached for him when he got diagnosed his world was turned upside down!! i watched him go through a grieving process of the life he was planning and trying to come to grips with his new life!” (10b) “In in my first bedside position I had a patient that reminded me of my father. he had the same name, and disease state. Observing his death forced me to confront my own experiences.” (34a) “It gives me meaning for caring more than just the cancer but the patient and their physical, emotional and social needs” (33c) “Each patient is a delicate and unique package.” (40c) “Hard situations allow me to continue to grow my empathy to better provide for future patients” (58c)