educating rns regarding palliative care in long-term care...

Educating RNs RegardingPalliative Care in Long-TermCare Generates PositiveOutcomes for Patients WithEnd-Stage Chronic Illness

Sheila Grossman, PhD, APRN-BC

v There are multiple gaps in providing palliativecare to older adults with advanced chronicillness symptoms who never get connectedto hospice or palliative care programs. Usinga pre- and posttest design via a retrospectivechart review, this study found the symptoms,interventions, and responses to interventionsthat older patients with end-stage chronic illnessexperienced. Findings revealed symptomssimilar to those listed by End-of-Life NursingEducation Consortium, including fatigue/weakness, anorexia/cachexia, sadness/depression, dyspnea, nausea and vomiting,anxiety/fear, confusion/delirium, diarrhea,constipation, and pain. A significant difference(t = 5.538, P G .0001) in long-term care nurses’pre- and posttest mean scores also wasdetermined. The results indicated thatin this convenience sample, older adults haveseveral burdensome symptoms that palliativecare programs could potentially improve. Beingaware of frequently observed symptomsin long-term care agencies can assist inanticipating what other long-term care olderadults may experience. Results can help toprevent or lessen symptoms and promote bestpractices for older adult symptom management.

K E Y W O R D S

educating RNs

long-term care

palliative care

symptom management

Mezey et al1 remind us that it is the ‘‘very old’’who are going to be most challenging to thehealthcare system, especially if they outlive

their families. These are the people who are going toneed nursing support services to assist with their chronicand acute care needs. More older adults will experienceadvanced stages of chronic illness and require palliativecare, although they may not die within 6 months or bein hospice. Symptom management of chronic illnessesand end-of-life (EOL) care is challenging in all practicesettings, but especially in long-term care (LTC) facilities.Many people never receive treatment for their depres-sion, anxiety, and discomfort at the end of their lives,and older adults were found to be at highest risk of not

JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 9, No. 6, November/December 2007 323

Author Affiliation: Sheila Grossman, PhD, APRN-BC,Professor and Director, Family Nurse PractitionerTrack, School of Nursing, Fairfield University,Fairfield, CT.

Address correspondence to Sheila Grossman, PhD,APRN-BC, School of Nursing, Fairfield University,Fairfield, CT 06824 ([email protected]).

receiving treatment for discomfort.2 Older adults alsowere found to have less ability to express their fears,3

experience increased fatigue,4 have increased dyspnea,5

and possibly to be less likely to benefit from spiritu-ality.6 Many terminally ill older adults have physicaldiscomfort, which can magnify anxiety, depression, anddyspnea.7 Palliative care programs are either nonexis-tent or underutilized in nursing homes.8 Most olderindividuals do not enter a hospice program until 2 to3 days before they die or may never enter.

Studies indicate that nurses do not feel competent orconfident in implementing symptom management atthe EOL.9 In a study conducted statewide in Colorado,Rice et al10 found that most nursing home administra-tors cited staff attrition and educational deficit amongphysicians, staff, and the public as being the most sig-nificant barriers to providing adequate palliative carein LTC.10 Most people in the United States enrolled ina hospice or a palliative care program have terminalcancer. Most older people do not die from cancer, how-ever, but from complications in the end stage of theirchronic illness, such as cardiac or respiratory failure.11

People who are in LTC facilities are generally therebecause they cannot function independently with theiractivities of daily living. Some have cognitive disordersbut many do not. They seem to experience the samesymptoms that EOL patients experience, such as dys-pnea, discomfort, diarrhea, constipation, anxiety, fatigue,depression, nausea and vomiting, and lack of appetite.The pattern of symptom manifestation for cancer pa-tients tends to differ from non-cancer patients at EOLin nursing homes.12 It seems the pattern of symptomsis affected by the underlying disease, although pain andrespiratory problems seem to be most frequentlyobserved.13 This study found that only 11% died fromcancer, and the remaining most frequent causes of deathincluded pneumonia, renal failure, disorders of electro-lyte and fluid balance, and cachexia.

Matzo and Sherman9 suggested several strategies toassist nurses in anticipating various problems and ideasfor symptom management with older adults experi-encing symptoms caused by end-stage chronic disease.Kuebler et al14 described palliative care that is specific toa chronic illness regarding symptom management andsuggested strategies for determining when and how toimplement the palliative nature of interventions. Othersdescribed helpful strategies to improve the nursing homeenvironment for a more comfortable and pleasing wayof living.15 Brandt et al12 reported that the most fre-quently experienced symptoms over the last 2 days of life

of nursing home patients (n = 463) included pain,dyspnea, and problems with intake of fluid and nutri-tion. Additional frequent psychosocial symptoms identi-fied as anxiety, self-worth, and ‘‘feeling life was notworthwhile’’ were identified as mostly ‘‘unmet needs,’’however. Constipation was described by Mavity16 as afrequent problem for people with pain taking opioidsand who were likely to be mobile and well hydrated.

A pilot study using the Edmonton Symptom Assess-ment Scale was conducted by Brechtl et al17 to attempt tomanage symptoms effectively. They found that pain andtiredness were the most frequent complaints. Liao andWeissman18 offered multiple strategies to facilitate effec-tive comfort to older adults experiencing EOL symptomswho are not necessarily going to die in the near future. Alarge percentage of nursing home patients experiencediscomfort that affects their sleep, ability to eat, woundhealing, overall state of well-being, anxiety and depres-sion levels, agitation, and quality of life.18 A study byHutt et al19 demonstrated improved patient comfortlevels after an educational intervention regarding phar-macological pain management was given to the nurses inthe nursing home. The literature supports the need forincreased expertise in caring for frail older adults.20,21

v PURPOSE

The purpose of this study was twofold: (1) to determine ifthere was a significant difference in RNs’ pre- and posttestmean scores after an educational intervention and (2) todetermine what symptoms, interventions, and responsesto interventions older patients with end-stage chronicillness experienced. The End of Life Nursing EducationCurriculum (ELNEC) consortium identified the ninemost frequent symptoms (fatigue/weakness, anorexia/cachexia, sadness/depression, dyspnea, nausea and vomit-ing, anxiety/fear, confusion/delirium, diarrhea, pain, andconstipation) experienced by people at EOL along withpain/discomfort, so they were the guidelines used forassessing symptoms. Hypothetically it was thought thatthere would be some older patients in the hospice programat each of the institutions; however, the hospice programwas just being developed and there were no enrollees.

Methodology and Results

This study used a pre- and posttest design with an edu-cational intervention for nurses. Frequency of identifiedsymptoms, interventions, and patient-related outcomes

324 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 9, No. 6, November/December 2007

to interventions were assessed 3 months before and3 months after the educational program using chartreview with a checklist of the ELNEC symptoms de-veloped by the researcher. The educational programconsisted of an abbreviated form of the ELNECsymptom and pain management modules.22 All nursesinterested in volunteering to participate in the nursingeducation intervention were invited to attend the classand complete the informed consent, demographic form,and pre/post tests. The interventional instrument forRNs measured symptom management knowledge andhad a Kuder-Richardson reliability of 0.66 to 0.70.Content validity was established by two clinical staffnurses with palliative and hospice care experiencein nursing homes. The mean pretest score was 33.914(SD = 8.592) and the mean posttest score was 47.392(SD = 8.47). Posttest scores for RNs (n = 47) werestatistically significantly different than pretest scores,as measured by a t test (t = 5.538; P G .0001).

The convenience sample was determined by thedirector of nursing at each of the two suburban LTCfacilities who asked the nurse managers to identify pa-tients who were conscious, had been at the LTC facilityfor at least 6 months, would complete the informedconsent, and were experiencing symptoms caused bytheir end-stage chronic illness. Institutional ReviewBoard approval was obtained from the university andagencies for the study. Using the checklist, two researchassistants collected demographics, number of docu-mented patient experiences with the ELNEC symptoms,number of documented interventions performed specifi-cally for these identified symptoms, and number ofdocumented patient-related outcomes experienced bythe patients. Interrater reliability of data collection wasestablished at 0.98 for the two data collectors.

Data were analyzed using SAS (SAS Corporation,Cary, NC) and consisted of descriptive statistics for thedemographic data.23 Demographics supported equalgroups from the two LTC facilities relating to thefollowing demographic variables: gender (female,76.19%), age (86-90 years, 33.75%), religion (Catholic,58.06%), ethnicity (white, 96.55%), education (highschool graduate, 38.46%), admission date (within last 4years, 73.02%), marital status (widowed, 51.6%),signed advanced directive (93.55% signed), comorbid-ities (98.41 had more than five comorbidities), andfamily involvement with patient (95% had familyinvolved with them). Most patients (65%) used non-steroidal anti-inflammatory agents, 23% used opioids,and 21% used a combination of both. Every patient

was on some type of prescribed medication; 31% usedantianxiety medications and 27% used antidepressants.Table 1 reflects the most frequent diagnoses for thesepatients. Confusion, anemia, incontinence, and weak-ness were also identified on the charts as frequentproblems but are generally considered manifestations ofa disease. Patients with cancer most frequently experi-enced bowel obstruction, anorexia, spinal cord com-pression, superior vena cava syndrome, infection,pneumonia, pleural effusion, and electrolyte imbalance.

Nurses’ written documentation of symptoms experi-enced by the patients did not significantly differ afterhaving the educational intervention except regardingidentifying and documenting confusion (t = 3.13;P G .002). Table 2 indicates the number of documentedsymptoms experienced by patients before and after theRN educational intervention. It is evident, however,that nurses increased their documentation of symptomsin every area after the in-service training. There weremore statistically significant differences in nurses’ fre-quency of documentation of interventions in the patients’charts after the educational class, which pertainedto dyspnea (t = 2.39; P G .02), confusion (t = 3.37;P G .0013), and pain (t = 2.24; P G .02). Table 3 indi-cates that in every symptom area there was an increase

T a b l e 1Highest Frequency Medical Diagnosesof Long-Term Care Patients

n = 64

Hyperlipidemia 48Hypertension 46Coronary artery disease/atherosclerotic heart

disease46

Diabetes mellitus 33Hypothyroidism 30Osteoarthritis 27Atrial fibrillation 27Chronic obstructive pulmonary disease 25Cancer (bladder, breast, colon, bone, prostate) 8Heart failure 13Parkinson’s disease 13Cerebrovascular accident 13Chronic renal failure 8Depression 8Anxiety disorder 7Dementia 3

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in documentation of interventions for patients. Table 4depicts frequency of documented, related outcomes forpatient symptom management after the educational in-service training, nurses documented more frequentlyregarding all symptoms, and the following areas werestatistically significantly different: fatigue (t = 2.27;P G .02), depression (t = 2.64; P G .01), dyspnea (t = 3;P G .003), confusion (t = 3.76; P G .0004), pain (t =5.02; P G .0001), and constipation (t = 2.42; P G .0188).

vDISCUSSION

The results in this convenience sample indicated thatolder adults have multiple needs. Knowing that educa-tional in-service training assisted in increasing documen-tation of symptom management, especially regardingoutcomes rendered for specific problems, is importantinformation. Also being aware of what symptoms aremost frequently observed in these two LTC agenciesshould assist with anticipating what other older adultswith similar illnesses experience in other LTC facilities.Results of this study can help to prevent or lessencertain symptoms from occurring and incorporate thesefindings into promoting best practices for older adultsymptom management.

Nurses tended to document most comprehensivelyon the patient’s response to pharmacological interven-

tion, specifically for confusion and discomfort. Oftenthere was no documentation noted for nonpharmaco-logical actions. There was more frequent documenta-tion of intervening for dyspnea, confusion, and pain.Nurses considered fatigue, depression, dyspnea, con-fusion, constipation, and pain worth notifying a phy-sician for additional interventions and documentedmore frequently the outcome of their interventions, butthere was little documentation of collaboration with thephysician on the other symptoms. Communicationtechniques that keep the family and patient interact-ing consistently with care providers are essential. Staffawareness of changes in management strategies foreach patient should be a priority. Patients recommendeda 24-hour shift collaborative board or communicationbook in which individualized notes regarding updatesand changes in the care of each patient could be initi-ated. Development of an interdisciplinary palliative careteam could be developed at LTC facilities to improve theholistic approach of patient care.

Sleep disturbances were identified 37% of the timeby the patients whose charts were reviewed. It seemedthat the nurses perceived the sleep problem to be amanifestation of a drug the patient was taking, dis-comfort or pain, anxiety, or gastrointestinal problems

T a b l e 2Frequency of Documented SymptomsExperienced Before and After RNEducational Intervention

DocumentedSymptomExperienced

Frequency BeforeRN EducationalIntervention

Frequency AfterRN EducationalIntervention

Fatigue 12 15Anorexia 10 12Depression 10 18Dyspnea 11 24Nausea &

vomiting12 16

Anxiety 13 14Confusiona 16 32Diarrhea 11 15Pain 37 47Constipation 8 15

at = 3.13; P G .0027.

T a b l e 3Frequency of Documented InterventionsGiven for Symptoms Experienced Beforeand After RN Educational Intervention

DocumentedSymptomsExperienced



Fatigue 12 14Anorexia 10 12Depression 10 18Dyspneaa 11 24Nausea &

vomiting10 15

Anxiety 13 13Confusionb 15 31Diarrhea 11 15Painc 37 46Constipation 8 15

at = 2.39; P G .02.bt = 3.37; P G .0002.ct = 2.24; P G .029.


(eg, indigestion, or diarrhea). Only 22% of the patientshad a prescription sleep aid. Assessment of sleeppattern is another symptom that needs more study inthe future, especially with regard to its relationship tooverall well-being. This study did not focus on druginteractions and potential side effects of polypharmacywith older adults. It was, however, noticeable that somesymptom problems, such as constipation, confusion,and fatigue, could be a direct result of the number ofmedications a patient was taking. The average numberof prescribed medications/day was six, and when over-the-counter drugs were added, the mean number ofdrugs/day for each patient was seven.

Although overall well-being or satisfaction with lifewas not assessed in this study, it would have beenhelpful to know if patients felt that they drew upontheir religion or spiritual beliefs on a daily basis.Although 98% of patients’ charts revealed a specificreligion, one cannot assume the person had deep valuesand beliefs regarding this. One would think that howa person viewed his or her overall well-being wouldhave a dramatic impact on symptom intensity and fre-quency. It also would be helpful to collect data re-garding family satisfaction with their family members’dying process and death in an LTC facility so that im-provements could be made. The literature indicatedthat there is a general consensus of what constitutes aquality EOL time, and it includes physical comfort, aspiritual or psychological well-being for patient andfamily, access and control by patient/family of decisionsregarding treatment, continuity of care, and familyadjustment after death.24 By improving practice, asmeasured by increased number of documented inter-ventions and positive patient symptom-related out-comes, higher quality care can be given. Nurses andother healthcare providers cannot assume what is bestfor their patients; rather, they must be knowledgeableenough to inquire about patient symptoms, provideinterventions, and evaluate patient outcomes.

vCONCLUSIONS

Nurses improved their knowledge base on symptommanagement in palliative care, as evidenced byincreased post-test scores, and improved practice, asmeasured by increased frequency of documented inter-ventions and patient response to symptom manage-ment. Findings indicated that more education of nursesin LTC should further improve patient outcomes

regarding symptom management in palliative care. Byintroducing palliative care versus hospice care for allpatients in nursing homes, symptom management canbe better facilitated.

Acknowledgments

Appreciation goes to the staff and patients at thetwo participating nursing homes, Marissa Glassman,Jacqueline Spano, and Elizabeth Lucas (student datacollectors), Dr. Deborah Sherman (Associate Professorand Coordinator of the Palliative Care Nurse Practi-tioner Program at New York University), who con-sulted with this work, and the Gustavus and LouisePfeiffer Research Foundation, which assisted in fundingthis project.

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T a b l e 4Frequency of Documented Patient-RelatedOutcome from Interventions Given forSymptoms Experienced Before and AfterRN Educational Intervention

DocumentedSymptomExperienced



Fatigue 5 14Anorexiaa 6 12Depressionb 8 18Dyspneac 11 24Nausea &

vomiting9 15

Anxiety 6 13Confusiond 15 31Diarrhea 7 15Paine 37 45Constipationf 4 15

at = 2.27; P G .0266.bt = 2.64; P G .0106.ct = 3; P G .0039.dt = 3.76; P G .0004.et = 5.02; P G .0001.ft = 2.42; P G .0188.

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