McLaughlin Honors Thesis

Running head: PALLIATIVE CARE EDUCATION

Palliative and End-of-Life Care Education for Undergraduate Nursing Students

Kellan McLaughlin

University of Florida

PALLIATIVE CARE EDUCATION 2

Abstract

The process of the Comfort Shawl Project begins with thoughtfully crafted shawls donated to the

project from across the nation. Our stakeholders include our growing base of volunteers, the

honors nursing students, and the staff members on the palliative care team at UF Health Shands.

The project has afforded the students the opportunity to work with and receive patient

assignments from an interdisciplinary team. After gifting a shawl, the honors students briefly

reminisce about the experience with the family and patient by writing a synopsis on the shawl

profile. The students have grown to develop a better understanding of what palliative care has to

offer for patients nearing the end of life. Unfortunately, only six undergraduate nursing students

have experienced these critical lessons. Undergraduate education is devoid of essential end-of-

life education, and recent graduates from many prominent universities express fear for caring for

a dying patient. It is essential that undergraduate nursing students receive a comprehensive

palliative care education to best prepare them for the increasingly ill population of all ages. Over

the past year, as a participant in the Comfort Shawl Project, I have learned indispensible nursing

skills, but those skills must also be taught throughout baccalaureate nursing programs.

Keywords: palliative care, nursing education, shawls, volunteer, baccalaureate students

(200 words)


Palliative and End-of-Life Care Education for Undergraduate Nursing Students

Introduction

The project began as a thoughtful opportunity to include palliative care experiences for

undergraduate nursing students. The three supervising mentors who started the project include

Dr. Glover, Professor Castleman, and Dr. Horgas. The first cohort of honors students consisted

of six traditionally prepared undergraduate nursing students, and the project continues to have six

students involved as part of the honors program.

During the nascent of the project, there were only a few donors. The Comfort Shawl

group fondly calls Clara and Else the “super-knitters” because they provide over forty percent of

the gifted shawls. Fortunately, over the course of the past year, the number of donations and

gifted shawls has increased dramatically. In fact, the number of shawls donated by Clara and

Else have been superseded by other donors from areas such as Oak Hammock. The second

collection of students has been able to gift 148 shawls this past year, which is four times as many

shawls gifted by the first group.

I was first introduced to the Comfort Shawl Project in the spring semester of my junior

year. Two of the original students presented the project and urged us to apply for the next cohort.

I was extremely thrilled that such an honors program existed. The Comfort Shawl Project

provided the right balance between nursing skills and the arts. Additionally, the chance to

participate with the palliative care team, an interdisciplinary group, was interesting to me. When

I was young, my mom, being a registered nurse (RN), had worked for hospice. From that young

age, I was aware of how my mother was affected by her patients’ deaths. I distinctly remember

when her first patient died, and she came home with a sorrowful demeanor. She had become very

close with her patients, and her patients became close with her. I realized though, that my mom


had made a lasting impact on the patients’ lives and the family’s memories. Not many

individuals are prepared for death, and in fact, many people are fearful of death. I knew the

Comfort Shawl Project would provide me with a great opportunity to be there for patients at the

end of their lives. Furthermore, I have always had a special fondness for a variety of art. I did not

know how to knit or crochet at the time of my application, but I was excited to learn so that I

could donate shawls to patients in the hospital. Yet again, the Comfort Shawl Project proved to

be the perfect combination of nursing, communication skills, and artistic release that I was

looking to incorporate into my nursing education at the University of Florida (UF).

During my undergraduate years at UF, I was an active member of Arts in Health. There, I

was one of the PR/Marketing chairpersons, and I was held responsible for communicating with

the members and the general student body about upcoming events and meetings. I was interested

in providing those skillsets, such as advertising via social media, as well to the Comfort Shawl

Project to improve the public relations with our current and perspective donors. Also, as stated

earlier, I was interested in working alongside the palliative care team. Over the course of my

undergraduate nursing curriculum, I have not had the opportunity to learn about palliative care

extensively. Therefore, the intent of this thesis is to discuss the varying levels of palliative care

education for undergraduate nursing students, and to answer the following question:

Does the limited amount of palliative care education in undergraduate curricula correlate

with preparedness to care for a patient near death?

Theory

Humanistic theory, created by Paterson & Zderad (1976), is an abstract meta-theory with

highly resonate palliative care concepts (Wu & Volker, 2012). The humanistic theory practices

uniqueness-otherness, self-reflection, genuine presence, and community (Wu & Volker, 2012).


Although these concepts seem spiritual and complex, each is quite easy to understand and

implement. For example, uniqueness-otherness simply refers to each patient and nurse as unique

individuals (Wu & Volker, 2012). Since elementary school, children have been educated that

each human is different. Wu and Volker (2012) explained that nurses practice the uniqueness-

otherness concept when they understand that each patient will respond to a treatment differently

or expect different outcomes from palliative care. When it comes to palliative care, it is crucial

for the nurse to understand that each patient on her treatment team will want a different end of

life experience (Wu & Volker, 2012). It seems sensible to understand that each patient is a

unique individual, but there are times that nursing becomes standardized and treatment is no

longer unique to each patient. This concept is essential to incorporate in palliative care education

to insure that each patient is exclusively cared for.

Additionally, patient and nurse self reflection ensures that appropriate end-of-life choices

are made (Wu & Volker, 2012). Because each patient is unique, they each have distinctive

experiences to reflect upon, which can shape the patient’s decisions. Similarly, nurses possess

uniqueness, and this allows the nurse to reflect and interpret how he or she sees end of life care

for him or herself or the patient (Wu & Volker, 2012). Humanistic theorists strongly support the

relationship between patient and nurse. For example, if a nurse is adamantly against the use of

morphine for sedation at the end of life, his or her self-reflection could impact her patient care.

Moreover, integrating palliative care education at the undergraduate level allows for students to

reflect upon their personal beliefs. It is fundamental for nurses to understand their principles so

that they do not adversely impact patient care.

One of the most powerful humanistic concepts is genuine presence. It is all too easy in

the busy schedule of a nurse to forget the impact of presence, and it proves to be just as


important in delivering meaningful palliative care. Wu and Volker (2012) explained that the

patient and the nurse are two matchless individuals who have come together for the same

purpose, which include healing and improving general well being. Although the bond seems

random and accidental, it actually creates an interpersonal relationship that is interpreted

differently by each subject (Wu & Volker, 2012). When the nurse is genuine, the patient

develops a feeling of sincere presence, and this is a paramount practice in every palliative

experience. The honors students were able to heavily practice genuine presence while delivering

shawls. This was an memorable experience because, as students, we were used to the hustle of

delivering medications and performing assessments during clinical rotation.

Finally, humanistic theory also focuses on the power of community (Wu & Volker,

2012). The patient, patient’s family, and the nurse become a collective group. As an assembly,

the patient-nurse community begins the end-of-life struggle, which proves to be an impactful

experience for the nurse (Wu & Volker, 2012). By becoming a member of this unique

community, Wu and Volker (2012) explained that the nurse could then reflect on biases, and

later on, open him or herself up to other possibilities. Overall, the humanistic theory highlights

the importance of the nurse-patient relationship and, “…is an expression of the nurse’s authentic,

existential commitment to the nurturing of human potential.” (Wu & Volker, 2012, p.473).

The humanistic theory is an excellent way to illustrate the importance of a strong

palliative care education. As Wu and Volker (2012) expressed, practicing the humanistic

guidelines such as genuine presence and community are the basic cores of nursing, which are

vital to all fields of care. By implanting a well-rounded palliative care education program, the

students are learning more than how to care for a patient at the end of life. It is imperative for

nursing students to understand each patient is a new case with a different story, and the patient


should be treated with similar individuality. Strong roots in humanistic practices would reinforce

true nursing practice for years to come. Although the explanations described by Wu and Volker

are abstract, the general concept is creating an everlasting bond that affects the patient and the

nurse. Each subject brings their own perspectives to the end-of-life care, and they must be

respected and understood.

Methods

The story of a single shawl begins when it is donated to the Comfort Shawl Project. The

project has donors all over Florida and across the nation, and many are UF graduates. At this

point, the students will take a picture of the shawl and sew on a custom tag. Once we have all of

this basic information about the shawl, we give it a unique name. Some shawls will come to the

project and already have a name given to them by their donor. Naming a shawl is more than just

an organization tactic. The name can be one of the most meaningful parts of the shawl for a

patient. For example, several patients have been drawn to shawls with the names of flowers or

natural wonders because it reminds them of home or of vacations they once took before coming

to the hospital.

With that, a student will make a shawl profile. Each shawl gets a specific profile with all

of the information, and two copies will be made of that document and placed in a binder of all

available shawls. At this point, the shawl is officially ready to be gifted to a patient. Once a

week, two Comfort Shawl students attend the Interdisciplinary Team (IDT) meeting. Among the

team are nurse practitioners, one physician, a chaplain, a Haven Hospice representative, and a

social worker. These professionals are assigned patients throughout UF Health Shands that have

been placed on palliative care or are considering the transition to hospice care. Based upon their

recommendations, we are assigned patients throughout Shands to offer a shawl. Additionally,


although these patients are receiving palliative care, which is often considered only for the

elderly, we have given to all age groups and patient demographics.

With some patient background information, the two students collect a number of shawls

and begin traversing the hospital floors to gift. Sometimes, patients chose not to accept the

shawl, even though it is a free gift, while other patients have a hard time picking out the perfect

shawl. When a patient chooses a shawl, they are given one of the two shawl profile copies. The

profile provides the patient with basic information and care instructions as well as the Comfort

Shawl Project contact information.

Upon returning from gifting shawls, the students write a brief narrative of the experience

on the back of the second shawl profile. The description will often include patient background,

devoid of identifying information, and the conversations that took place. Our donors look

forward to hearing from Dr. Glover regarding the story of when his or her shawl was gifted.

When the donor hears the story, it is a strong realization that the donation was not just an empty

gift, but it truly meant something powerful to the patient.

Furthermore, over the course of the past year, the second cohort has accomplished several

new achievements. For example, we were able to visit the knitting circle at Oak Hammock twice

where many of our donors reside. We were also able to visit and tour the E.T. York Care Facility

with Haven Hospice, and where able to gift four shawls while we were there. We were honored

to have an article written about our visit to Haven Hospice in the January Heart Beat Newsletter.

Additionally, we have hosted a knitting circle for the junior and seniors of the nursing program.

Since then, we have received several donations from students. The cohort has also had the

pleasure to participate in knitting circles with our avid knitters, Clara and Else.

Role in Project


Among the other roles that myself and the other five classmates share, I contributed to the

social media aspect of the project. Before the second cohort, there was no public Facebook page

available for the Comfort Shawl Project. I took on the responsibility of creating the page, and it

has proven to be a powerful communication tool among the donors and the project. Since the

creation of the page on October 3, 2015, the page has generated 121 likes, which continues to

grow each week. One of the most impactful posts on our page were the images from the visit to

Haven Hospice. That particle article reached 181 people, and was clicked on 79 times with 12

shares.

When the page was first created, someone privately contacted the group in regards to

donating all of her yarn. We were able to exchange contact information, and then, within a

matter of weeks, she had sent us all of her yarn to use for the purpose of the project. Thanks to

her donation, we were able to provide some yarn to Clara and Else to make more shawls.

Another time, a family member liked our Facebook page while we were still with the patient

because she was so thankful for the shawl we were gifting her mother. The patient wanted her

daughter to make a donation to our program, and finding the page on Facebook was an effortless

way to connect her with our contact information. Facebook has made it incredibly easy to

disseminate meaningful messages to a wide scope of people, and the future cohorts will have

endless opportunities with this platform as well.

Personal Reflection

To introduce palliative care into the curricula will take many semesters of practice, but I

was able to briefly introduce the topic during a knitting circle. Initially, the idea for the knitting

circle was to spread the news about the Comfort Shawl Project and the need for donations, but it

became much more once I realized the impact we could have. During the knitting circle, we had


students from the junior and senior nursing classes, and many of them were novices with knitting

and palliative care. The knitting circle was an excellent opportunity to educate the students about

palliative care.

I too needed to be better educated on the multiple aspects of palliative care, and the

assigned reading of, Being Mortal, by Atul Gawande was a great beginning. Gawande is an

excellent author, and the book was formatted with a different narrative in each chapter. The

innovative organization allowed the reader to focus on one new palliative care subject at a time. I

learned a substantial amount of material on palliative and hospice care from, Being Mortal, and I

believe that all nursing students would benefit greatly from this text. One of the great lessons that

Gawande offered was the “ask, tell, ask” (Gawande, 2014, p.207). Palliative care requires a lot of

active listening and thoughtful questioning. There is much to learn, and small introductions to

palliative care can spark interests in developing nurses to gradually improve the future of

palliative care.

What I Learned

It has been an honor to be a part of the Comfort Shawl Project over the past year, and I

am graduating with a wealth of knowledge. During my time with the project, my interest in

palliative care was reawakened. Between reading Gawande’s book and attending IDT palliative

meetings, I learned the breadth of end of life care and how a nurse can be involved. Furthermore,

the Comfort Shawl Project also was a phenomenal platform for therapeutic communication. Each

of our patients was facing end-of-life decisions, and the families were often there as well. The

patient rooms we walked into each week were more than what we had ever experienced on an

average clinical day. I learned what to say and what not to say, and I plan to use that knowledge

every day during my nursing practice. Therefore, I believe the project has improved my


communication skills, and I have become slightly more comfortable with discussing death with a

patient. Each unit can have patients facing palliative care decisions, and it is my goal to better

educate myself on palliative care by becoming certified in palliative and hospice nursing

(CHPN) and acting a resource nurse for my floor.

Furthermore, having the opportunity to delve into palliative care research was a fantastic

learning experience. I was hesitant to join the honors program because I was not sure if I could

make the commitment, but the time I have spent researching and reading scholarly journals has

widened my evidenced-based practices. In fact, by researching palliative care education, it has

sparked an interest in myself to improve education delivered to nursing students across the

United States. I whole-heartedly believe that without the honors program I would not have taken

the time to research palliative care education, and I am thankful I took the opportunity to do so.

Additionally, without the Comfort Shawl Project, I would not have been given the chance to

participate in Transition, the final clinical of the nursing program, with Haven Hospice. This

clinical site has not been offered to students in a number of years, and during our visit to the E.T.

York Care Center, I realized what a meaningful experience I could derive as a young nurse. I am

beyond thankful for the perseverance my mentors exhibited to make this clinical site possible.

In addition to improving my nursing practice, I was able to implement leadership skills.

The Comfort Shawl Project allowed me coordinate meeting times between our faculty mentors

and the other project members and create a Facebook page that will impact the project for years

to come. In totality, the project has granted me the chance to develop many of my nursing skills

such as delegation, leadership, communication, and continuing education.

Results and Discussion


Palliative care is defined as, “an approach that improves the quality of life of patients and

their families facing the problem associated with life-threatening illness, through the prevention

and relief of suffering…” (World Health Organization, n.d.). Because palliative care is

associated with life-threatening illnesses, many providers assume that patients receiving

palliative care will die. In some cases however, the patient will return home with their illness in

remission or continue palliative therapy intermittently. Other practitioners believe that hospice

and palliative care are synonymous forms of treatment. In fact, hospice is generally provided for

someone with six months or less to live, while there may be no time frame for palliative care.

Additionally, palliative care is mainly delivered in institutions such as hospitals whereas hospice

care is likely provided in a specified hospice facility (National Caregivers Library, 2015).

This general confusion and lack of clarity can likely be attributed to the lack of

undergraduate nursing education, among other health fields, in palliative care measures. During

my time as an undergraduate nursing student at UF, I had limited exposure to palliative care

education. I recall my only class presentation on palliative care occurred in my last semester.

Similarly, the last semester of my senior year, we were required to complete Toolkit for

Nurturing Excellence at End-of-Life Transition (TNEEL) modules for clinical rotation. These

modules focused on end of life measures, but they were self-guided and they were not reviewed

in class. My earliest exposure to palliative care was during the Comfort Shawl Project. As a

student participant, I was able to attend interdisciplinary palliative care team meetings and

interact with patients at the end of their lives.

Furthermore, many articles have reached the same conclusion of Usher, DiNella, Ren,

Liang, and Tuite, which was that many new graduate nurses do not possess enough education on

palliative care (2015). To further compound this issue, hospitals have limited resources to


instruct new graduates on proper end-of-life care. Caring for a patient at the end of his or her life

is an incredibly nerve-racking experience, but all of the studies agreed that nursing staff and

students were undereducated on topics of palliative care making the experience even more

anxiety provoking. The three most reported areas of weakness were general symptom

management, communication skills with a dying patient, and overall knowledge of palliative care

(Lippe and Carter, 2015).

A lack of end-of-life education does not only limit the options available for the patient

population, but it can also emotionally and physically harm nurses. Zheng, Lee, and Bloomer

(2015) reported that young nursing graduates often reported nervousness, helplessness, stress,

and guilt among other negative emotions. Moreover, the nurse graduates were often left alone to

care for a dying patient, which made them feel inadequate and unprepared to provide care

(Zheng, Lee, & Bloomer, 2015). It is easy to see that the lack of undergraduate education in

palliative care cannot only harm the patient but also the nursing graduate. Zheng, Lee, and

Bloomer went on to explain that the nursing graduates who felt unprepared would often resort to

avoiding the patient and family because they did not know how to care for their varying needs

(2015). Not all nurses will be comfortable with providing end of life care, but by offering

education before graduation, new cohorts of graduates will be better prepared to handle dying

patients and the families.

Due to the limited education for nurses of all levels, there is also incomplete evidence on

the best teaching method for palliative care. Fortunately, it has been shown that simulation

examples, didactic courses, and other supplemental materials were positively received by nursing

students (Lippe & Carter, 2015). Usher, et al., noted that role-playing between a nurse and a

dying patient was extremely helpful in training peer nurse coaches (PNC) for young graduates


(2015). The participants in the PNC training believed the role-playing was highly effective

because it took them out of their comfort zones and helped to strengthen communication skills

(Usher, DiNella, Ren, Liang, & Tuite, 2015).

Additionally, the American Association of Colleges of Nursing (AACN), in partnership

with the Robert Wood Johnson Foundation, explicitly stated that palliative care education has

been inconsistent or even completely missing from the majority of nursing curricula (AACN,

1998). To help abolish the gap between education and patient care, the AACN created the project

titled, Peaceful Death, which is a list of fifteen core competencies (1998). The project continues

to explain that the competencies are designed for nurse educators to weave into coursework, and

the AACN lists several courses in which palliative care could be introduced to students (1998).

In 2015, the AACN revised the core competencies, which included the addition of two new

competencies (AACN, 2016). The AACN also presented shocking survey results, gathered in

2015, stating that 71 faculty members scored their nursing students at 5.4 out of 10 for

preparedness to handle a palliative situation (2016).

The End-of-Life Nursing Education Consortium (ELNEC) initiative, which is supported

by the AACN offers valuable resources for faculty on palliative care such as ELNEC-CORE.

The ELNEC-CORE is a program designed to train college faculty on palliative care (1998).

Although there is limited scientific data regarding the most effective teaching tool for palliative

care, it is imperative to incorporate end-of-life education into the undergraduate curricula. With

resources such as the AACN Peaceful Death and ELNEC to provide the basic structure,

developing coursework in the form of presentations, simulation, and role-playing is in the hands

of the college. The state of Florida already looks toward UF’s nursing students with admiration,


and with the addition of the fifteen core competencies from the AACN, nursing graduates would

be well-prepared for any hospital unit.

Summary and Future Directions

Over the past year, the Comfort Shawl Project has surpassed many goals including

improving stakeholder involvement, expanding our volunteer base, and including more students

with the project. Although we have a growing number of volunteers, we have greatly improved

our communication with the various stakeholders in the project via social media. As an example,

the Facebook group has created an effortless communication platform between the project and

the volunteers and members of the interdisciplinary palliative team. By sharing stories about the

recent group events, our stakeholders can easily remain up-to-date, in addition to the other

community members on the page. Moreover, visiting the Oak Hammock Needlers group, touring

the E.T. York Care Center, and involving the other nursing students with knitting circles has

served as another growth opportunity for the Comfort Shawl Project.

In conclusion, being a member of the honors program and a participant of the Comfort

Shawl Project has provided me with irreplaceable nursing and clinical experience. I am fortunate

to have had the opportunity to participate with the palliative care team at UF Health, and I have

discovered some of my genuine nursing concentrations, and they will continue to shape my

future as a Gator nurse.

My goals for the next cohort of honors students is to use their ambition to take the project

even further. I hope they involve the juniors and seniors with more knitting circles and palliative

education programs. I also anticipate that the students will be able to involve more UF programs

and involve students of all backgrounds.


References

American Association of Colleges of Nursing (AACN). (1998). Peaceful Death: Recommended

Competencies and Curricular Guidelines for End of Life Nursing Care. Retrieved January

25, 2016, from http://www.aacn.nche.edu/elnec/publications/peaceful-death

American Association of Colleges of Nursing (AACN). (2016). Competencies and Curricular

Guidelines for Undergraduate Nursing Programs: Preparing Nurses to Care for the

Seriously Ill and their Families. Retrieved March 2, 2016.

Gawande, A. (2014). Being mortal: Medicine and what matters in the end. New York, NY:

Metropolitan Books.

Lippe, M. P., & Carter, P. (2015). End-of-Life Care Teaching Strategies in Prelicensure Nursing

Education. Journal of Hospice & Palliative Nursing, 17(1), 31-39 39p.

doi:10.1097/NJH.0000000000000118

Usher, B. M., DiNella, J., Zhan, L., & Tuite, P. K. (2015). Development of End-of-Life Peer

Nurse Coaches...A Hospital-Based Quality Improvement Project (Vol. 17, pp. 551-558

558p). Baltimore, Maryland: Lippincott Williams & Wilkins.

World Health Organization (WHO). (n.d.). WHO Definition of Palliative Care. Retrieved

January 25, 2016, from http://www.who.int/cancer/palliative/definition/en/

Wu, H., & Volker, D. (2012). Humanisitic Nursing Theory: Application to hospice and palliative

care. Journal of Advanced Nursing, 2(68), 471-479. Retrieved January 25, 2016.

Zheng, R., Lee, S., & Bloomer, M. (2015). How new graduate nurses experience patient death: A

systematic review and qualitative meta-synthesis. International Journal of Nursing

Studies, 53, 320-330 311p. doi:10.1016/j.ijnurstu.2015.09.013

McLaughlin Honors Thesis

Documents

Transcript of McLaughlin Honors Thesis