Oncology Advanced Practice Nurses’ Memorable Patient Care Experiences: A Qualitative Analysis

Abstract

Introduction:

The purpose of this study was to describe oncology advanced practice nurses’ (APRNs) experiences caring for memorable patients, the meaning derived from patients’ experiences and the influence patients have had on their careers. This study builds on work describing the meaning of oncology nursing practice.

Methods/Results:

Oncology APRNs (N=66) participating in an NCI funded ELNEC course responded to 3 open-ended prompts/questions: (1) Share a story about a memorable patient, (2) Why do you think the memory of this patient is meaningful to you? (3) How do you think caring for this patient has influenced your nursing career? A thematic, qualitative analysis of their responses identified several key themes including:

1. Lessons learned: Usually profound, occasionally resulting in career altering impact.

2. Admiration: Admiration for patients’ kindness, grace, strength, hope and courage through terminal illness.

3. Delivery of high-quality palliative care: The foundation for deep connections and mutually beneficial relationships between APRNs and patients.

4. Challenges: Clinical scenarios involving APRNs feeling like they failed; staff distress, trauma, or grief.

Conclusions:

Oncology nurses described early nursing career experiences of patients as the greatest teachers and shared invaluable and transformative lessons learned about what it means to be human in the face of serious illness.

Lay person summary

What we investigated and why

Our goal was to explore oncology advanced practice nurses’ (APRNs) experiences caring for patients who were memorable to them, why they were meaningful, and the influence patients have had on their careers.

How we did our research

We sent surveys to oncology APRNs who participated in a continuing education course offered by ELNEC, including the following prompts/questions: (1) Share a story about a memorable patient, (2) Why do you think the memory of this patient is meaningful to you? (3) How do you think caring for this patient has influenced your nursing career? We conducted a qualitative analysis of their responses.

What we have found

We identified several key themes including:

1. Lessons learned: Usually profound, occasionally resulting in career altering impact.

2. Admiration: Admiration for patients’ kindness, grace, strength, hope and courage through terminal illness.

3. Delivery of high-quality palliative care: The foundation for deep connections and mutually beneficial relationships between APRNs and patients.

4. Challenges: Clinical scenarios involving APRNs feeling like they failed; staff distress, trauma, or grief.

What it means

This study builds on prior work describing the meaning of oncology nursing practice. Oncology nurses described early nursing career experiences of patients as the greatest teachers and shared invaluable and transformative lessons learned about what it means to be human in the face of serious illness. Our findings have important implications for nursing education and support.

Introduction and Background

The landscape and complexity of cancer care has changed significantly in the last decade. Advances in early diagnostics, the increase in the number of cancer diagnoses, and the increase in young adults being diagnosed with cancer all pose challenges for APRNs to adapt to meet the changing needs of the oncology population today. Targeted therapies and the complexity of the evolving genomic markers are changing the treatment landscape ¹.

Over 2 million new cancer cases are expected to be diagnosed in the United States in 2025 and more than 618,000 people will die from the disease, the equivalent of 1,700 deaths per day ². Cancer is a leading cause of death worldwide, accounting for nearly 10 million deaths in 2020 ³. As cancer continues to be significant problem worldwide, and the number of cancer survivors continue to grow, APRNs will need to continue to evolve to meet the dynamic needs of the increasing oncology population with more complex diagnostics and therapies, and continue to be integral to oncology teams ensuring access to quality care ⁴.

In a recent survey of oncology nurses (RNs, nurse practitioners, nurse navigators, and infusions nurses) on their perspectives of their evolving roles in practice, they highlighted their multi-faceted responsibilities emphasizing patient-centered care, communication, education, and empowerment, in addition to their expected duties of administering anticancer therapy, monitoring of side effects, and symptom management. The majority of the sample (82.6%) noted their workload has increased ⁵.

Patients are diagnosed earlier and are living longer, and care settings continue to evolve with an emphasis on providing care in the outpatient setting, at home and virtually. In response to these care delivery changes, the role of the oncology advanced practice registered nurse (APRN) has expanded and evolved.

Role of Oncology APRNs

Oncology advanced practice nursing represents a wide variety of roles across the cancer continuum, and the titles used as well as the scope of practice differs by country ⁶. In a scoping review of advanced practice nursing titles and roles in oncology settings globally, there was a wide variation in roles and titles, particularly in the United States and the United Kingdom⁶. To standardize the role and practice of oncology APRNs in the United States, in 2007 the Oncology Nursing Society (ONS) convened an expert panel of representatives from numerous nursing organizations. The goal of the panel was to establish the entry-level competencies essential for oncology APRNs caring for adult patients with cancer. These were subsequently updated in 2019 to include competencies that are based on the following aspects of APRN practice: Assessment, diagnosis, and intervention; Health promotion and education; Ethics and culturally congruent care; Communication; Leadership; Evidence-based practice and research; Professional practice evaluation; and Resource utilization and quality of practice ⁷.

These competencies make clear that the role of the oncology APRN goes far beyond the technical work of assessing, diagnosing, and managing illness. Despite the essential role of oncology APRNs, little is known about what is important to these providers, what it means to bear witness to those facing serious illness and death, and what meaning these APRNs find in the role.

Meaning in oncology nursing

The ONS Life Cycle of the Oncology Nurse Task Force was a project that began in 1989 to explore the meaning of being an oncology nurse and to better characterize the career trajectory of oncology nurses ⁸. The task force highlighted the concept that critical incidents when caring for patients, defined as career or life changing events, which influence the oncology nurse’s ability to thrive in their role. The task force described the joy of celebrating clinical victories and the sorrow associated with suffering and loss, which is inherent in this work. Understanding the experiences of oncology nurses would reveal opportunities for recruiting new members into the community, along with building commitment and engagement in those already practicing in the field.

Common themes that have emerged from the exploration of the meaning of being an oncology nurse, are related to the unique nurse-patient relationship ^9–13. Perry (2008) highlighted oncology nurses’ experiences including moments of connection, making moments matter, and having energizing moments in caring for patients ¹¹. Nurses build relationships with patients and their families through moments of caring and connection and bearing witness to the experience of illness. They help patients navigate the transition from illness to recovery or to end of life. This work has been described as both stressful and rewarding ¹⁴, yet oncology nurses also found meaning and joy in this work. Davis and colleagues (2017) described the concept of investing to make a difference, reflecting on how oncology nurses invested in building relationships with patients and their families, and invested in themselves by developing their knowledge and skills and ultimately their identities as oncology nurses ⁹. These investments had a mutually beneficial effect, by not only enhancing their role as oncology nurses, but they were also perceived as making a difference in the lives of patients and family members by supporting them through cancer treatment ⁹. Galuscka and colleagues (2018) identified four themes to support meaning: fulfilling purpose (I am a nurse), meaningful connection, impact, and the practice environment (teamwork, leaders model the way, opportunities to learn and grow) ¹⁰.

The critical components of the human connection between the oncology APRN and their patients remains unclear. Nor do we fully understand the environmental, personal, professional, or clinical factors that influence the ability of the oncology APRN to forge these connections with patients. Understanding these could reveal opportunities to develop interventions that promote the APRN’s sense of fulfillment and meaning in their work, essentially helping them to foster deep and meaningful connections with patients and families, ultimately improving the delivery of high-quality cancer care.

Purpose and aims

The purpose of this qualitative study was to describe the oncology APRNs’ experiences of caring for a memorable patient, the meaning they derived from these care experiences, and the subsequent influence these interactions have had on the APRNs’ careers.

Methodology

Participants and Setting

Participants in this study (n=66) included oncology APRNs from across the United States (representing 27 states) attending the National Cancer Institute (NCI)-funded End-of-Life Nursing Education Consortium (ELNEC) Oncology APRN (EOA) training. The EOA course is a 2 1/2-day, in-person training to prepare APRNs in oncology settings to integrate primary palliative care within their current role. The ultimate goal is to improve the quality of care for people with cancer and their families. The course is organized by the eight palliative care domains defined by the National Consensus Project (NCP) for Quality Palliative Care. The learning objectives of the EOA course are (1) identify the eight domains of quality palliative care applied to oncology practice, (2), demonstrate skills for oncology APRNs in the domains of palliative care and (3) develop goals for implementing the skills training in practice through process improvement, staff education, and clinical care ^15,16.

Participants were invited to complete a short online survey immediately following the EOA course. Study recruitment and procedures were deemed exempt by the Institutional Review Board given that all data were collected from course participants only. Course participants completed the course evaluation on the final day of the course and responded to 3 open-ended prompts/questions: (1) Share a story about a memorable patient, (2) Why do you think the memory of this patient is meaningful to you? (3) How do you think caring for this patient has influenced your nursing career?

There were a total of 69 course participants, 3 of whom were Physician Assistants and thus removed from the study sample. All 66 APRNs who were sent the survey completed it, thus the response rate was 100%. To receive credit for the course, participants were required to complete course evaluations and the survey was included in the course evaluation sent via email on the 3^rd and final day of the course

Procedures

Survey responses were organized in Google Forms, then de-identified and transferred to a Microsoft Excel document. There were a total of 14,452 words across all responses, 218 words on average used by each participant, and an average of 73 word responses to each question. Given there is minimal published data and current understanding of the impact patients have on the APRNs who care for them, the APRNs’ responses were analyzed using inductive content analysis, as the concepts were derived from the data ¹⁷.

Four ELNEC faculty members reviewed and individually coded the first 17 responses (25% of the dataset) based on common themes that were identified in the text. Faculty members held several conference calls to review the codes identified, establish similarities and resolve differences in the codes, and finalize the code names and definitions to ultimately establish consensus coding. The remaining coding was done in faculty pairs. A thematic, qualitative analysis of their coded responses identified 26 codes, which the faculty team condensed and organized into several key themes that emerged.

Results

The majority of participants were female (90%) and identified their race as white (80%) followed by Black or African American (11%), Asian (4%), or more than one race (4%). Most participants described their ethnicity as non-Hispanic (92%). Participants had been practicing in nursing for an average of 18.4 years with an average of 13.9 years of experience in oncology. The average number of years since the completion of their highest degree was 8 years. The majority of course participants cared for adults (89%) in the outpatient setting (73%) in community cancer centers (65%) and NCI Designated Cancer centers (35%). Approximately 85% were Nurse Practitioners; 11% were Clinical Nurse Specialists; and 4.3% identified as serving in some other role (e.g., nurse educator, staff nurse, etc.) (Table 1).

Table 1.

APRN Participant Demographics

	Total (n=66)	%
Participant - Gender
Female	60	90%
Male	6	9%
Participant - Race
American Indian/Alaskan Native	0	0%
Asian	3	4%
Black or African American	7	11%
Native Hawaiian or Pacific Islander	0	0%
White	53	80%
More than one race	3	4%
Participant - Ethnicity
Hispanic	5	8%
Non-Hispanic	61	92%
Patient Population
Adult Only	59	89%
Pediatric Only	7	11%
Both	0	0%
Participant Title/Position
Nurse Practitioner (NP)	56	85%
Clinical Nurse Specialist (CNS)	7	11%
Other (Educator, RN, etc.)	3	4%
Type of Cancer Center
NCI Designated Cancer Center (Clinical Cancer Center or Comprehensive Cancer Center)	23	35%
Community Oncology Programs	43	65%
Inpatient or Outpatient
Inpatient	18	27%
Outpatient	48	73%
Number of Years of Experience		Average
As a Nurse		18.4
Since competition of highest degree		8.0
In oncology		13.9

Four key themes or categories emerged from the analysis of participants’ responses to the prompt “Share a story about a memorable patient” and the following questions (1) Why do you think the memory of this patient is meaningful to you? (2) How do you think caring for this patient has influenced your nursing career? These themes included: “Lessons learned”, “Delivery of high quality palliative care”, “APRN inspiration and admiration for the patient”, and “Challenges”.

Lessons Learned

The most common theme identified in why a memorable patient was meaningful and influential, was the learning that resulted from APRNs providing care (Table 2). These lessons were usually profound, such as learning a new perspective, what really matters in life, how to balance hope with reality, and the importance of preparing patients for their death.

Table 2:

Lessons learned

Lesson learned

“It opened my eyes to other cultures. Helped me learn about what was important to her. This included turning a blind eye to only allowing 2 visitors, nope there are not 6 women and a baby in there! I wanted to learn how to take the best care possible for patient and that’s including understanding what was most important to them.” (11c) “I remember several things about this patient including that his wife was a very demanding persnickety woman but because of my own experience I understood that this was driven by a deep love for her husband. Learning that people respond to stress, loss and grief in different way was a very important lesson.” (34b) “I also learned that denial is a powerful coping skill.” (34c) “She reminded me that the glass doesn’t have to be half empty. It can be half full. She also reiterated that spirituality plays a HUGE role in life and needs to be recognized and incorporated into hospital care.” (44c) “This patient was a great teacher and taught me many lessons. Her death was a great loss and I think that it taught me to set better emotional boundaries as well as professional boundaries.” (45b) “I learned so much about communication through care of this patient. She taught me early on my career that the best way we can be there for the patient is to listen and let them be heard, we don’t need to have all the answers or know how to fix everything.” (45c) “Things change very quickly with his case and we had literally no time to really discuss what he may want as he been doing quite well and was a full code previously. Also giving the treatment and then having so quickly a negative outcome was impactful. That would help me realize that even though we try these awesome treatments with patients that sometimes they don’t make it despite our efforts.” (59b) “It taught me that love is love and that caregivers experience incredible distress during the care of their loved ones.”... This was years prior to gay marriage or the current environment of acceptance. I still imagine that Glennis would be pleased with the progress we have made as a society and I am eternally grateful for her educating me.” (62c) “Because it taught me that just because someone did something bad, it’s still my job to be a great nurse for them.” (65b) “This patient really showed me what it is to give 110%. Despite the hand that she was dealt she bravely faced her disease and was still an incredibly kind and giving person. She still went out of her way to make a positive impact on everyone around her.” (69b)

Participants described learning the importance of kindness, as one participant wrote: “I learned so much from this patient. He taught me that small acts of kindness are sometimes exactly what is needed.” (31b) and another participant agreed that: “I think it validates my belief that kindness/caring is one of the most important interventions.” (8b).

Participants described learning or being reminded of the powerful impact they have on the lives of patients and their families:

“I also learned that… nurses can have profound impact on how a family member experiences a loved one’s illness, treatment or death”. (34c)

“Richard taught me that we have very little control over the outcome of cancer but that we influence and improve patient and their families’ experiences as they deal with cancer”. (61c)

Participants also described learning the importance of advocating for care that is consistent with patients’ values:

“He taught me that spending time learning about my patients lives and interests was just as important as their physical status assessments. And it taught me to continue advocating for care that was consistent with my patients values to the very end.” (31b)

“I often think that if the palliative care team was not consulted, he may not have lived to meet his son. I’m sure his oncologist would continue pushing for next line of therapy. His story and his memory remind me that asking a patient “what matters the most to you?” is extremely important; also, advocating for what is important to patients is our privilege and duty.” (56b)

These lessons sometimes resulted in the development of a new perspective on life, changed a previously held belief of the APRN, and occasionally resulted in a career altering impact.

Delivery of High-Quality Palliative Care

When describing memorable patients they cared for, participants consistently described clinical care scenarios in which they delivered high quality palliative care that was patient-centered and holistic (Table 3). In these circumstances, the APRN provided expert symptom relief, demonstrated empathy and compassion, instilled hope, advocated for patients, helped patients achieve their wishes, were present to bear witness to their patient’s suffering, and facilitated comfort at the end of life to ensure a peaceful death. Below are some examples demonstrating memorable patients who received high quality palliative care:

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)

“Early in my career I had the opportunity to care for a young patient (late 20) prior to this i was mostly familiar with older adults. She was a single mother of 3 and would always come with her mother and small children. I learn from this experience that cancer care is individualized and involves more than just treatments. I learn to established goals that go beyond clinical. To incorporate holistic plans and the importance to ask questions. I learned to celebrate accomplishments regardless of how little they were and to understand both struggles that of a dying mother who only wishes her children will remember her and that of a mother who is losing her only child and access to her grandchildren when her daughter dies.” (64a)

“Many disciplines worked as a team to make her palliative care tailored to her life and children and family. Long before palliative care was a formal service.” (46b)

“Ultimately, we were able to get this patient’s pain and symptoms under control so he could make the flight back to his country. It gave me comfort to know that he was with his family hopefully comfortable in his home instead of in a hospital surrounded by strangers which is likely what would have happened if he stayed in America and pursued further medical treatment.” (39a)

“She passed away in an emergency room and I spoke with her a good part of the way to the hospital, just staying on the phone so she would have someone to listen and she would not be alone.” (45a)

“He was actively dying but I was able to get them up to the unit and comfortable. He was able to have lots of family and friends visit before he passed that night.” (7a)

Participants also described care experiences in which they derived satisfaction and meaning in providing high quality palliative care. These were clinical care situations in which the APRN felt they made a positive impact, when patients and families expressed their gratitude, and when the APRN felt fulfilled, personally satisfied, or validated. Examples that illustrate this subcategory include:

“the next time she saw the doctor I worked for she had typed up a long and heartfelt letter about the care I provided and the small ways that I had changed her life. I still have this letter to this day and I hope that I always will.” (45a)

“At the end of his treatment, his mom had pulled me aside and said that she was always watching me whenever they came into clinic and despite how busy it was, I had always made them feel like they were my only patients and my top priority. That made me feel amazing and at the time, I had no idea that I was doing that or that I had that effect on someone in such a positive way.” (55a)

“Trying to make it easier for a patient, meeting her needs. Helping someone go through a hard time and make that time easier.” (58b)

Central to high quality palliative care is the nurse-patient relationship. The APRNs described experiences of caring when they were able to establish a deep connection with a patient and their family, sometimes related to a personal connection or similarity they shared, or other times when they were able to forge a connection despite adversity or great differences. The following quotes illustrate these concepts:

“I cared for one patient …while she underwent subtotal gastrectomy for gastric ca. She really struggled with her postop course and was on TPN for quite sometime. She was very discouraged and thought she would never eat again. I spent a lot of time with her, encouraging her to try different foods. When she was readmitted I came in on a weekend to visit her. She was so incredibly grateful for all my care and wanted to stay in touch. This woman has become like family to me and will be at my wedding this year. She turned 85 last year and it’s crazy to think our relationship began where it did.” (14a)

“As an infusion RN I became very close to a heme patient and his wife. He eventually had a transplant and we spent a lot of time talking about his life over the months of treatment. They were both so kind and appreciative even when he felt poorly. He was the only patient that I’ve gone to his funeral. It was such a privilege to get to know him and care for him.” (20a)

“Very complex social situation who distrusted the healthcare system and staff could not engage with her. Communication was difficult, but I was able to work with her at the end of her life and provide support through her journey.” (4a)

“When Jay passed, I was able to be present with the family and comfort them. The gratitude and appreciation they showed under the tough circumstances reinforced that I had a positive impact on them despite the unfavorable outcome. I still keep in touch with his family to this day and they thank me for the great care and guidance during that time.” (68a)

APRN Inspiration and Admiration for the Patient

Many of the course participants shared how the patients who were most memorable were those who were inspiring to them in some way, or whom they admired for their kindness, grace, strength, hope, and courage in the face of terminal illness (Table 4). This key theme is illustrated by the following quotes:

Table 4.

Admiration

APRN Inspiration and Admiration for the Patient

“But just an amazing woman that always came to clinic looking beautiful and smiling. Her husband was amazing and so caring.” (16a) “I cared for one older gentleman who has since passed. He was in and out of remission and always took it in stride. What I remember most was that every time he came in, he told me a joke. I always knew if he, wasn’t feeling well because he wouldn’t tell a joke” (25a) “This patient accepted her initial diagnosis and eventually her poor prognosis with grace. She never failed to ask about our well-being as we strived to manage her advanced symptoms. Her concern was always focused on others (her spouse of 50 years, a daughter, and our infusion team). We often say we love our patient’s and she very aware of how we felt about her.” (38b) “A young woman diagnosed ... at 26, died at 30. She was an old soul. She expressed disappointment and worry infrequently, and most often showed joy and gratitude. She expressed gratitude for everything, and often, and spoke about how lucky she was for this or that, pets, parents, friends, travel, education, everything. We remember her not as a sad or tragic case but as an extraordinary human.” (41a) “My wonderful beautiful 12 y/o patient. He just recently passed away. I have known him since he was 4 and newly diagnosed Neuroblastoma. So many treatments he endured, all with a smile and the best hugs I will ever have. He was an important part of my life, I miss his hugs and that beautiful smile.” (48a) “This patient inspired me. She had clear goals at diagnosis. She poorly tolerated chemotherapy and decided no more treatment. This was the first goals of care conversation I led as a NP. I will never forget this special person.” (63c) “She had a good support system, but having a SINGLE young child myself I cannot imagine how difficult it must have been for her to juggle everything. Yet she had the most positive person I had ever met, nearly never complained, and had a can do attitude, and was always grateful and gracious. She really pushed through terrible GI side effects before allowing us to finally dose reduce her medication because she wanted to try to tolerate the full dose. I was getting married and might have mentioned it in passing to her. One Christmas she gave me personalized ornaments she had made with photos she must have found online from our wedding website. She has since passed, and every year when I put up the ornaments I think about her.” (69a)

“He taught me so much by role-modeling for me how to come to terms with his diagnosis of cancer, how to face an unknown future with courage and grace, how to go through chemotherapy, radiation, surgery, and treatment side-affect with humor and dignity, and ultimately how to die on one’s own terms.” (17a)

“She has influenced my career by always being caring, loving, and present in each moment all while being strong, resilient and selfless. She exhibits each of these traits in every encounter despite how she may be feeling or what she may be going through personally. These are all traits that I attempt to incorporate in my practice and life regularly (some days I do better than others). (23c)”

Challenges

This final theme involved memorable patients that challenged the APRN in some way and often involved caring for a patient with high levels of distress or suffering, patients who APRNs felt they failed somehow, or situations that involved staff distress, trauma or grief (Table 5).

Table 5.

Challenges

Staff trauma/distress/concern	“Very early in my career I was working as an LPN in long-term care. One night I went to work, and one of the residents was actively dying. Her daughter was very concerned because she hadn’t been eating and the doctor had placed an order to insert an NG tube For feeding. I tried to explain to the daughter that the NG tube and tube feeding would cause more distress for her mother, but she wouldn’t hear of it. Her concern was that her mother was starving. I even said “your mother’s not dying because she’s not eating. She’s not eating because she’s dying.” However, the daughter still insisted that her mother receive the feeding tube and two feedings be initiated. So I inserted the NG tube started the tube feeding and the daughter left to go home for the night. before the end of my shift, the resident passed and the last thing I did to that lady stick an NG tube down her nose.” (24a) “This remains meaningful to me, even 30 years later because rather than providing comfort to an actively dying patient, I performed an invasive procedure and caused her more.” (24b) “A cachectic and lethargic, middle-aged woman showed up for her hydration appointment at my infusion center. Based on the palliative performance scale, it looked like she had days to live. The palliative care conversation had never been broached. The nurses were very fearful that this patient might stop breathing in the infusion center”. (32a) “To me, it is somewhat of a systems failure, that they are trudging through the transportation burden to get to the infusion center, nearly on death’s door, rather than utilizing their remaining time and energy to be at home with family.” (32b) “As a new graduate nurse, I cared for a lovely patient over several days, she was very sick with multiple co-morbidities and a poor prognosis. She eventually decided to stop hemodialysis and wanted to go home on hospice; she never made it home and died in the hospital. As a new grad, I was wildly unprepared for this and quite upset but quickly had to shift gears and take responsibility for my other patients/assignments. There was no time to grieve or process what had happened and I quickly learned to keep going.” (37a) “A 29 year old female patient with burkitts lymphoma refractory to all therapies we treated her with. The oncologist working was persistently trying all regimens despite her becoming more and more frail and looking more and more like she was at the end. Her family was not agreeing with withdrawing care when the patient agreed to withdraw care, she however changed her answer when her family was present asking to continue finding therapies. The oncologist was not willing to give up. The patient ended up dying in the hospital before we could get her on hospice and was still a full code. The team had no choice to act on this code until declaring her deceased and the family blamed the team for failing the patient.” (49a) “A female patient the DLBCL. I was with her since of diagnosis. she was younger than me with a 3-year-old daughter. We could never get her to her scheduled outpatient infusions due to complications and always being admitted so we would [administer] chemo inpatient. During this particular admission I had to inform her that her condition was worsening. I remember sitting on the bed next her and she hugged me crying pleading with me to not let her die she needs to live for her daughter. I sat on the bed with tears down my face. I told her we are doing everything we can and are not giving up. The weekend came and went. On Monday I came to clinic to find out she passed away. It was sudden and per ICU team was very traumatic for all involved” (66a)
APP sense of failure/regret	“Immediately after his death I did not want to be a nurse anymore because I felt like he and I had both failed.” (17c) “This memory has left a lasting effect on me. I share this story from time to time. During a time when the most important thing was providing comfort, I inflicted discomfort. She died only a few short hours later. Her last hours should have been peaceful and I did not provide that for her. Since, I advocate for comforting whenever possible.” (24c) “I feel regret that she likely suffered more than she should have and that a palliative care consult could have been made sooner in her treatment process - just because there were so many aspects of her care that could have been better!”(70b)
Patient high needs/distress/suffering	“Because she was a special young woman who desperately needed help and had limited support. Her death was traumatic for staff and her children, who were not aware of her diagnosis until her last hours.” (4b) “I recently cared for a Malaysian refugee with metastatic hormone positive breast cancer. She was 37 with three small children. There were so many barriers to care: she did not speak English, it was difficult to find an interpreter who spoke her dialect, she had only just learned to read Malay, she did not drive, there was no source of income aside from social services, her husband could not work as she could not independently care for their children due to severe LUE lymphedema, and on and on. Her symptom burden was so high and taking multiple medications was new to her (so she didn’t). She was in and out of the ER and inpatient due to infections, uncontrolled pain, nausea/vomiting. Her goals focused on her children. Our entire multidisciplinary team was involved but our treatment plans never seemed to work on any level (physical, social, emotional, etc). She died a few weeks ago. I will always feel like we failed her.” (52a) “A female patient the DLBCL. I was with her since of diagnosis. she was younger than me with a 3 year old daughter. We could never get her to her scheduled outpatient infusions due to complications and always being admitted so we would chemo inpatient. During this particular admission I had to inform her that her condition was worsening. I remember sitting on the bed next her and she hugged me crying pleading with me to not let her die she needs to live for her daughter. I sat on the bed with tears down my face. I told her we are doing everything we can and are not giving up. The weekend came and went. On monday i came to clinic to.find out she passed away. it was sudden and per ICU team was very traumatic for all involved” (66a)
APP grief	“Immediately after his death I did not want to be a nurse anymore because I felt like he and I had both failed. But slowly, after grieving and self-reflection, I rediscovered my affinity for nursing and working with oncology patients.” (17c) “Richard was brave but also scared. He was tough but also vulnerable. I think since he was one of the first patients I cared for - from diagnosis until his death - I grew VERY attached and I felt loss/grief after he died.” (61b)

“I will always regret the false sense of security that I initially tried to provider to her in addressing her fears about a possibly poor prognosis and future limited life. It was a very hard lesson for me but one that has helped shaped how I try to approach all of my patients with what are, I hope, more appropriately realistic conversations of what can and cannot be known about prognosis for any disease state. What we say to patients is so important and our words must be chosen with great care to avoid real harm that can be caused.” (19c)

“This patient should have been placed on hospice and allowed to die with dignity and peacefully but multiple factors did not allow that between the family, the patient not wanting to disappoint her family and the oncologist not wanting to give up when NPs, pharmacists, the fellow and nurses all brought up concern. This is a case that sticks with me as I still feel we as a team failed the patient when we could not get anyone to agree to hospice. A family meeting with the patient, family, palliative care and the heme onc service simply lead to an argument between the family and the oncologist.” (49b)

“I think it’s because I couldn’t find a successful way to “help”. Even in complex cases, I often feel I’m able to contribute in some way that improves the patient’s life. This patient put her trust in us and we couldn’t seem to improve any aspect of care. For me, the cases I feel that I’ve failed stick with me for so much longer than the successes.” (52b)

Discussion

This qualitative study was conducted to describe the oncology APRNs’ experience of caring for a memorable patient, the meaning they derived from these care experiences, and the subsequent influence these interactions have on the APRNs’ careers. Oncology APRNs attending the NCI-funded ELNEC Oncology APRN course responded to three questions: (1) Share a story about a memorable patient, (2) Why do you think the memory of this patient is meaningful to you? (3) How do you think caring for this patient has influenced your nursing career?

The four themes identified included “Lessons learned”, “Delivery of high-quality palliative care”, “APRN inspiration and admiration for the patient”, and “Challenges”. Despite the many advances in cancer care, the results of this study are remarkably similar to the work conducted by the Oncology Nursing Society (ONS) Life Cycle Task Force. Just as the task force highlighted that critical incidents influence the oncology nurses’ ability to thrive in their role, this study revealed that memorable patients affected the lives and careers of oncology APRNs. The ONS Task Force described the joy of celebrating clinical victories and the sorrow associated with suffering and loss, and this qualitative study reinforced that joy, suffering, hope, loss and grief are all part of the APRN experience in caring for those with cancer ⁸. As ONS celebrates the 50^th anniversary of the organization in 2025, it is very timely to recognize the enduring experiences and values of nurses.

It is striking that the memorable patients most often identified by the APRNs were patients they cared for early in their careers. This was a fairly seasoned group of APRNs with an average of nearly 2 decades of experience, and yet the memorable patients they described were often patients they cared for in their first year as an RN or APRN. Memorable patients were also patients who the APRNs knew and cared for over a long period of time. Another common theme that emerged was that the memorable patients the APRNs described were often patients who were at the end of life or actively dying. This is consistent with the literature that meaning and fulfillment is derived from caring for patients during this sacred time in their life ^18–20. From the very beginning of nursing careers, patients are nurses’ greatest teachers. Oncology APRNs learn invaluable and transformative lessons from their patients about what it means to be human in the face of serious illness.

There are very published studies on oncology APRNs’ experience of caring for memorable patients and meaning derived from these care experiences. Data from this study demonstrates that a deep connection exists between patients and their oncology APRNs, and may be mutually beneficial. Oncology APRNs focus on a holistic approach to care with comprehensive symptom management of their disease and treatment, and expert psychosocial support for patients and their families. Studies have shown that patients who receive care from APRNs are more satisfied with their experience ^{21, 22} and APRN involvement improves access to and quality of care ^{23, 24}. A systematic review of how oncology APRNs are perceived, demonstrated that APRNs provide support to patients by alleviating stress, manage their symptoms and improve their quality of life ²⁵.

Limitations

This was a single written survey, which is likely a limitation as in-depth interviews might have resulted in more detailed information. The survey was sent to APRNs attending a palliative care focused education program which may have influenced the findings. The findings may have been different if the survey was sent to Oncology APRNs attending a precision medicine education program. Similarly, as the respondents were participating in a palliative care education program, that may have influenced the memorable patients being those at the end of life. The majority of participants have a significant amount of experience (nurses who have remained in the oncology field and perhaps have found meaning). Also APRNs participating in an educational session may be more motivated and more inclined to find meaning in their interactions. This sample is not representative of the full oncology APRN workforce. Many APRNs find memorable patients in their early nursing experiences which may be a reason why the findings are similar to those previously reported by RNs, because APRNs describe their experiences as RNs. Perhaps we would have different results if participants were asked to respond by recalling their experiences as APRNs only.

Strengths

There were several strengths of this study. APRN participants represented a diverse group of practice settings in oncology including inpatient and outpatient units, and academic medical centers as well as rural community health care centers, across the country in 27 different states. The results obtained by APRNs are very similar to those discussed by RNs, which may support the study findings.

Implications for Practice & Conclusion

This data demonstrates that some of the most memorable experiences that nurses have occur with patients they cared for early in their careers as well as those they cared for over a long period of time. Knowing the profound impact and learning that nurses experience early in their career has implications for nursing education and is important for educators as well as nurse managers to consider when planning how to best support their students and staff.

The length of the caring relationship between patients and their APRNs (brief vs long period of time) does not seem to have an influence on whether the patient was memorable or not, the circumstances do appear to have an impact. The majority of the memorable patients were patients facing end of life.

Oncology nursing care, regardless of being performed at an RN vs. APRN level, promotes deep connections with patients and families, as they face a critical illness and uncertainty of their life and future. This may also be a reason why oncology is one of the specialties with highest burnout rates for both nurses and physicians, and those who may not find the positive aspects highlighted in this study, may be more inclined to change specialties. Retention of nurses in oncology is crucial for high quality care, and further support and education may be needed in promoting healthy nurse-patient/family relationships to prevent burnout and turnover. Further study is needed to determine how the relationship between oncology APRNs and their patients and families is maintained and what factors (environmental, personal, professional, or clinical) influence this relationship in positive or negative ways.

Highlights.

• Oncology advanced practice nurses shared stories of caring for memorable patients.

• A thematic, qualitative analysis of their responses identified several key themes.

• Themes were transformative lessons, admiration, palliative care, and challenges.

• Memorable patients were commonly from early nursing career experiences.

• These results have important implications for nursing education and support.