Running head: PALLIATIVE CARE: IT'S NOT WHAT YOU THINK IT IS 1

Palliative Care: It's Not What You Think It Is

Samantha Bradley

Jackson College
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ABSTRACT

In America, we have a growing number of people, varying in age, who are diagnosed every year

with a terminal and/or chronic (progressive) illness, meaning the disease cannot be cured, only the

symptoms can be managed. According to the Center for Disease Control and Prevention, in 2012,

approximately 117 million people were living with one chronic disease and 25% had two or more

chronic illnesses ("CDC," 2017). With this number steadily rising, patient need for care that

pertains more to comfort, spirit, and mind is becoming more prevalent. One-third of hospitals in

the United States report no palliative care services to offer (“Palliative Care, Report Card, 2018).

Unknowingly to a large percentage of this population, there is already an established service

available termed “palliative care.” Information regarding these services is limited due to a

deficiency in education of health professionals, myths that palliative care is only for cancer

patients, failing to differentiate between palliative care and end-of-life care, and inappropriate

timing of patient education. Clinical implications for instituting an increase in nurses’ knowledge

about palliative care and introducing palliative care to patients at a more appropriate time could

provide earlier relief of symptoms and improve quality of life for individuals with terminal and

chronic illnesses.
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The World Health Organization (WHO) identifies palliative care (PC) as a more holistic

application of care for individuals with diseases that are progressive or terminal: “Palliative care

is 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 by means

of early identification and impeccable assessment and treatment of pain and other problems,

physical, psychosocial and spiritual” ("Palliative Care Definition," 2018). Despite the benefits of

palliative care, patients are still suffering from ailing symptoms because a lack of knowledge

about PC still exists among nurses and patients.

PICOT Question

As bedside nurses are the ones to spend a majority of their time with patients, compared

to other health professionals, that are living with these chronic and terminal illnesses, it raises the

question: Can nurses promote earlier relief of symptoms, to improve quality of life, in patients

with chronic or terminal conditions, by providing education about palliative care?

Prognosis Question

The PICOT question being asked is a therapy type of inquiry. A therapy question helps

gauge the likely outcome of a patient’s illness over time. For this paper the question is being

utilized to research the effectiveness of education about PC to promote earlier alleviation of

symptoms and improve quality of life in patients with terminal and progressive illnesses.

Although cancer patients are the most predominant users of palliative care, patients with COPD,

heart disease, and end-stage kidney disease (among many more) are applicants for PC services.
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Evidence

The projected best evidence to answer this prognosis type question is evidence-based

research focusing on the outcome of education and the relief of symptoms. Evidence regarding

the promotion and outcomes of palliative care education to terminally ill patients would better

support the PICOT question being asked.

Databases

CINAHL and Cochrane were the databases used to find evidence-based research.

CINAHL was the database with the most relevant, though not specific, full-text research towards

the PICOT question. Searching “education about palliative care,” on CINAHL, 307 articles, all

of which were unsupportive of patient education, showed up. Redefining the terms to “public

knowledge about palliative care” resulted in 14 articles, only three articles were relevant. The

final search thread on CINAHL, “early palliative care interventions” generated 125 full-text hits,

nine seemed current and fitting of the PICOT question being asked.

Narrowing down the search results for the Cochrane database was more difficult than

using the first search engine. Searching “early implementation + palliative care + education,”

Cochrane produced over 7,000 articles. Narrowing the search down to “early interventions and

palliative care,” one out of the 195 articles that presented was incredibly pertinent.

Research Methods

Three out of the ten articles used for this paper were single descriptive or qualitative

studies, two were case control or cohort studies, two were in the “other” category that included

an interview study and a cross-sectional interventional study. Of the other three articles, one was

a random control study (RCT), controlled trial non-randomization, and a systemic review from

RCT.
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Level of Evidence

The content available for the PICOT topic is at a moderate level. There are several

articles relating to segments of the question, but only one that definitively supported patient

education leading to improved quality of life. There were, however, several appropriate articles

that indicated the need for education among health care professionals (including nurses) and

evidence that early palliative care does help improve symptoms and moods in patients who are

terminally ill.

Among the ten articles chosen for this paper, most research was performed regarding

cancer patients excluding other progressive diseases such as COPD, heart disease, end-stage liver

disease, etc.

Summary of Findings

Most articles found were supportive of this PICOT question and indicate that the quality

of cancer patients lives improved with early initiation of PC versus late or standard oncology

care. The numerous amount of evidence found solely on cancer and PC may be because

numerous health care professionals have a knowledge deficit about when it is pertinent to initiate

PC.

Being diagnosed with cancer, a potentially terminal illness, leads to many standard

oncology care options, but PC may not be offered at this time because it is often overlooked. To

compare early PC interventions versus standard oncology care, Haun et al. collected and

analyzed data from seven randomized controlled trails (RCTs) and cluster-RCTs about PC

services, comprised of about 1,614 patients. “Compared with usual/standard cancer care alone,

early palliative care significantly improved health-related quality of life at a small effect size…
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and may have more beneficial effects on symptom intensity among patients with advanced

cancer than among those give usual/standard cancer care alone” (Haun et al., 2017).

Public and patient knowledge about PC is scant, which contributes to patients suffering

from their disease manifestations longer. The Center to Advance Palliative Care held a poll to

assess the knowledge about PC in patients who were receiving a hematopoietic stem cell

transplantation at the University of Michigan. The results were astonishing, “more than 70% of

patients were not at all knowledgeable about palliative care” (Harden & Schembri, 2016).

During this trial twenty-five patients, along with their families, met with a nurse

practitioner that was part of the palliative care team before admission. Interventions concerning

PC such as the patients’ aspirations, values, and goals of care were the emphasis in this meeting.

A questionnaire was given after the meeting and showed that 83% of patients gained their

knowledge about PC and 92% knew how and when to access PC (Harden & Schembri, 2016).

Barriers to comprehending information about PC include anxiety, stress, and fear. The

“optimal time” to provide education varies from patient-to-patient and situation-to-situation. As a

nurse, assessment is continual, making nurses the ultimate resource of improving the timing of

education. “If nursing staff feel empowered to teach palliative care principles, they could play an

important role in assessing patient readiness to discuss palliative care and then provide patient

education about the benefits of palliative care are the appropriate time for patients and families”

(Harden & Schembri, 2016).

Data regarding the need and benefits of early PC in chronic illnesses, other than cancer, is

scarce. One study held in Philadelphia, Pennsylvania, at the Liver Transplantation Center of

Albert Einstein Medical Center focused on patients with end-stage liver disease (ESLD) and

their need for early palliative care interventions (EPCI) (Baumann et al., 2015).
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“While awaiting transplant, ESLD patients suffer from somatic ailments (muscle

cramps) and psychological distress (depression, anxiety, etc) that significantly decrease their

quality of life” (Baumann et al., 2015). EPCI was initiated during each patients’ usual one-week

pre-transplantation evaluation.

To evaluate the severity of the symptoms experienced this study used an altered version

of the Edmonton Symptom Assessment System (ESAS) scale. The scale assessed ten common

symptoms: pain, anxiety, fatigue, appetite, well-being, myalgia, dyspnea, sexual dysfunction,

sleep-disturbances, and pruritus. Dealing with a chronic illness can be psychologically difficult.

Patients depressive symptoms were analyzed using the Center for Epidemiological Studies

Depression (CES-D) scale. This tool involved twenty-items, if the patients score was more than

fifteen, it indicated “clinically significant depressive symptoms” (Baumann et al., 2015).

Thirty patients took part in this study from July 1, 2013 through May 1, 2014. Following

EPCI, twenty-three participants experienced a significant improvement of pruritis, anxiety, and

appetite. Upon the first evaluation, thirteen of the thirty patients were clinically depressed,

experiencing more than five depressive symptoms. After initiation of EPCI, there was a

“dramatic 8.89 improvement in CES-D scores.” (Baumann et al., 2015). This statistical matter

shows that early initiation of palliative care improves symptoms sooner.

To increase the knowledge about PC and to enhance the quality of life in patients with

chronic illnesses, nurses must first be well-informed. Two studies, one done in Delhi, India, and

the other in Canada, particularly focused on the knowledge of nurses. Seventy-six cardiac nurses

in Canada were tested on a scale of 0-20 using the Palliative Care Quiz for Nurses (PCQN). This

tool involved fallacies about PC and utilized True, False or I do not know responses. Thirteen out

of the twenty included statements focused on pain and other symptoms, four addressed palliative
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care philosophies, and three were related to the psychosocial/spiritual category (Schnell-Hoehn

et al., 2017). “Seventy-five percent of the participants either answered incorrectly or did not

know that palliative care is compatible with aggressive treatment… Health care providers may

falsely believe palliative care is reserved for those at the end of life where aggressive therapy is

no longer pursued” (Schnell-Hoehn et al., 2017). Nurses with an associate degree scored seven

percent lower than those with a baccalaureate, indicating more years of education and clinical

experience slightly increases knowledge about palliative care.

Twenty-Nine nurses and doctors from India partook in the “Essentials of Palliative Care

Program” certification course. This approach compared the participants knowledge about PC

before and after the course. Overall, there was a 58.7% increase in knowledge post course

including: improvement of “communication skills, symptom management, breaking bad news,

and pain assessment after completion of the program (Bhatnagar S, Patel A, 2018).

Clinical Implications and Conclusions

Clinical adjustments should include increasing nurses’ education and introducing PC to

patients upon, or shortly after, the initial diagnosis of their terminal or chronic disease. Being

diagnosed with a life-threatening illness can be catastrophic to that person and their family.

Education about PC services can assist with coping strategies during this challenging time,

relieve ailing symptoms, and improve quality of life. Patients could benefit from broadening

nurses’ education about PC. As nurses become more knowledgeable about administering

information at a more appropriate time, chances of lengthening the recipients’ relief of symptoms

are increased.

Initiation of PC may be complicated because patient and family preconceived ideas

would impact implementation of education at the time of diagnosis. Emotions of both the patient
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and family members are elevated at this time and rational thinking is finite. Retaining any

information regarding helpful services may not be practical. Patients and their families should be

encouraged to consider options after “digesting” the diagnosis.

If I were a nurse being confronted with this need to implement change, I would focus on

patient and nurse education. For nursing education, I would work with the appropriate people to

incorporate a mandated course in palliative care for nurses and all healthcare professionals. Most

facilities already require a certain amount of continuing education requirements. I believe a PC

specific credit may be sufficient to fill this gap in knowledge. As for patient education, I would

implement a standard protocol that is specific to assessing patient and family knowledge about

palliative care, making sure they can differentiate between palliative and end-of-life care. I

would work with physicians to have them schedule a follow-up appointment, three to four days

after diagnosis so another knowledge assessment could be made and any confusion about

available options could be resolved.

A sufficient amount of research about the benefits of early initiation of PC was available,

but more research needs to be done concerning the appropriate time to educate patients about

their options of palliative care.

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References

Baumann, A. J., Wheeler, D. S., James, M., Turner, R., Siegel, A., & Navarro, V. J. (2015).

Benefit of Early Palliative Care Intervention in End-Stage Liver Disease Patients

Awaiting Liver Transplantation. Journal Of Pain & Symptom Management, 50(6), 882-

886.e2. doi:10.1016/j.jpainsymman.2015.07.014

Bhatnagar, S., & Patel, A. (2018). Effectiveness of the Certificate Course in Essentials of

Palliative Care Program on the Knowledge in Palliative Care among the Participants: A

Cross-sectional Interventional Study. Indian Journal Of Palliative Care, 24(1), 86-92.

doi:10.4103/IJPC.IJPC_116_17

Deaths and mortality (2017). Retrieved from https://www.cdc.gov

Harden, K. L., & Schembri, J. A. (2016). Early Intervention With Transplantation Recipients to

Improve Access to and Knowledge of Palliative Care. Clinical Journal Of Oncology

Nursing, 20(4), E88-E92. doi:10.1188/16.CJON.E88-E92

Haun MW, Estel S, Rücker G, Friederich H, Villalobos M, Thomas M, Hartmann M. Early

palliative care for adults with advanced cancer. Cochrane Database of Systematic

Reviews 2017, Issue 6. Art. No.: CD011129. DOI: 10.1002/14651858.CD011129.pub2

Schnell-Hoehn, K., Estrella-Holder, E., & Avery, L. (2017). Cardiac Nurses' Knowledge of

Palliative Care. Canadian Journal Of Cardiovascular Nursing, 27(4), 9-15.

WHO Definition of Palliative Care (2018). Retrieved from

http://www.who.int/cancer/palliative/definition/en/