Palliative care education essential for nursing students

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

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