Mezey et al. Educating RNs Regarding Palliative Care in Long-Term Care Generates Positive Outcomes for Patients With End-Stage Chronic Illness

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1 Educating RNs Regarding Palliative Care in Long-Term Care Generates Positive Outcomes for Patients With End-Stage Chronic Illness Sheila Grossman, PhD, APRN-BC v There are multiple gaps in providing palliative care to older adults with advanced chronic illness symptoms who never get connected to hospice or palliative care programs. Using a pre- and posttest design via a retrospective chart review, this study found the symptoms, interventions, and responses to interventions that older patients with end-stage chronic illness experienced. Findings revealed symptoms similar to those listed by End-of-Life Nursing Education 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 was determined. The results indicated that in this convenience sample, older adults have several burdensome symptoms that palliative care programs could potentially improve. Being aware of frequently observed symptoms in long-term care agencies can assist in anticipating what other long-term care older adults may experience. Results can help to prevent or lessen symptoms and promote best practices for older adult symptom management. K E Y W O R D S educating RNs long-term care palliative care symptom management Mezey et al 1 remind us that it is the very old who are going to be most challenging to the healthcare system, especially if they outlive their families. These are the people who are going to need nursing support services to assist with their chronic and acute care needs. More older adults will experience advanced stages of chronic illness and require palliative care, although they may not die within 6 months or be in hospice. Symptom management of chronic illnesses and end-of-life (EOL) care is challenging in all practice settings, but especially in long-term care (LTC) facilities. Many people never receive treatment for their depression, anxiety, and discomfort at the end of their lives, and older adults were found to be at highest risk of not Author Affiliation: SheilaGrossman,PhD,APRN-BC, Professor and Director, Family Nurse Practitioner Track, School of Nursing, Fairfield University, Fairfield, CT. Address correspondence to Sheila Grossman, PhD, APRN-BC, School of Nursing, Fairfield University, Fairfield, CT (sgrossman@mail.fairfield.edu). JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 9, No. 6, November/December

2 receiving treatment for discomfort. 2 Older adults also were 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 spirituality. 6 Many terminally ill older adults have physical discomfort, which can magnify anxiety, depression, and dyspnea. 7 Palliative care programs are either nonexistent or underutilized in nursing homes. 8 Most older individuals do not enter a hospice program until 2 to 3 days before they die or may never enter. Studies indicate that nurses do not feel competent or confident in implementing symptom management at the EOL. 9 In a study conducted statewide in Colorado, Rice et al 10 found that most nursing home administrators cited staff attrition and educational deficit among physicians, staff, and the public as being the most significant barriers to providing adequate palliative care in LTC. 10 Most people in the United States enrolled in a hospice or a palliative care program have terminal cancer. Most older people do not die from cancer, however, but from complications in the end stage of their chronic illness, such as cardiac or respiratory failure. 11 People who are in LTC facilities are generally there because they cannot function independently with their activities of daily living. Some have cognitive disorders but many do not. They seem to experience the same symptoms that EOL patients experience, such as dyspnea, discomfort, diarrhea, constipation, anxiety, fatigue, depression, nausea and vomiting, and lack of appetite. The pattern of symptom manifestation for cancer patients tends to differ from non-cancer patients at EOL in nursing homes. 12 It seems the pattern of symptoms is affected by the underlying disease, although pain and respiratory problems seem to be most frequently observed. 13 This study found that only 11% died from cancer, and the remaining most frequent causes of death included pneumonia, renal failure, disorders of electrolyte and fluid balance, and cachexia. Matzo and Sherman 9 suggested several strategies to assist nurses in anticipating various problems and ideas for symptom management with older adults experiencing symptoms caused by end-stage chronic disease. Kuebler et al 14 described palliative care that is specific to a chronic illness regarding symptom management and suggested strategies for determining when and how to implement the palliative nature of interventions. Others described helpful strategies to improve the nursing home environment for a more comfortable and pleasing way of living. 15 Brandt et al 12 reported that the most frequently 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 nutrition. Additional frequent psychosocial symptoms identified as anxiety, self-worth, and feeling life was not worthwhile were identified as mostly unmet needs, however. Constipation was described by Mavity 16 as a frequent problem for people with pain taking opioids and who were likely to be mobile and well hydrated. A pilot study using the Edmonton Symptom Assessment Scale was conducted by Brechtl et al 17 to attempt to manage symptoms effectively. They found that pain and tiredness were the most frequent complaints. Liao and Weissman 18 offered multiple strategies to facilitate effective comfort to older adults experiencing EOL symptoms who are not necessarily going to die in the near future. A large percentage of nursing home patients experience discomfort that affects their sleep, ability to eat, wound healing, overall state of well-being, anxiety and depression levels, agitation, and quality of life. 18 Astudyby Hutt et al 19 demonstrated improved patient comfort levels after an educational intervention regarding pharmacological pain management was given to the nurses in the nursing home. The literature supports the need for increased expertise in caring for frail older adults. 20,21 v PURPOSE The purpose of this study was twofold: (1) to determine if there was a significant difference in RNs pre- and posttest mean scores after an educational intervention and (2) to determine what symptoms, interventions, and responses to interventions older patients with end-stage chronic illness experienced. The End of Life Nursing Education Curriculum (ELNEC) consortium identified the nine most frequent symptoms (fatigue/weakness, anorexia/ cachexia, sadness/depression, dyspnea, nausea and vomiting, anxiety/fear, confusion/delirium, diarrhea, pain, and constipation) experienced by people at EOL along with pain/discomfort, so they were the guidelines used for assessing symptoms. Hypothetically it was thought that there would be some older patients in the hospice program at each of the institutions; however, the hospice program was just being developed and there were no enrollees. Methodology and Results This study used a pre- and posttest design with an educational intervention for nurses. Frequency of identified symptoms, interventions, and patient-related outcomes 324 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 9, No. 6, November/December 2007

3 to interventions were assessed 3 months before and 3 months after the educational program using chart review with a checklist of the ELNEC symptoms developed by the researcher. The educational program consisted of an abbreviated form of the ELNEC symptom and pain management modules. 22 All nurses interested in volunteering to participate in the nursing education intervention were invited to attend the class and complete the informed consent, demographic form, and pre/post tests. The interventional instrument for RNs measured symptom management knowledge and had a Kuder-Richardson reliability of 0.66 to Content validity was established by two clinical staff nurses with palliative and hospice care experience in nursing homes. The mean pretest score was (SD = 8.592) and the mean posttest score was (SD = 8.47). Posttest scores for RNs (n = 47) were statistically significantly different than pretest scores, as measured by a t test (t = 5.538; P G.0001). The convenience sample was determined by the director of nursing at each of the two suburban LTC facilities who asked the nurse managers to identify patients who were conscious, had been at the LTC facility for at least 6 months, would complete the informed consent, and were experiencing symptoms caused by their end-stage chronic illness. Institutional Review Board approval was obtained from the university and agencies for the study. Using the checklist, two research assistants collected demographics, number of documented patient experiences with the ELNEC symptoms, number of documented interventions performed specifically for these identified symptoms, and number of documented patient-related outcomes experienced by the patients. Interrater reliability of data collection was established at 0.98 for the two data collectors. Data were analyzed using SAS (SAS Corporation, Cary, NC) and consisted of descriptive statistics for the demographic data. 23 Demographics supported equal groups from the two LTC facilities relating to the following demographic variables: gender (female, 76.19%), age (86-90 years, 33.75%), religion (Catholic, 58.06%), ethnicity (white, 96.55%), education (high school graduate, 38.46%), admission date (within last 4 years, 73.02%), marital status (widowed, 51.6%), signed advanced directive (93.55% signed), comorbidities (98.41 had more than five comorbidities), and family involvement with patient (95% had family involved with them). Most patients (65%) used nonsteroidal anti-inflammatory agents, 23% used opioids, and 21% used a combination of both. Every patient was on some type of prescribed medication; 31% used antianxiety medications and 27% used antidepressants. Table 1 reflects the most frequent diagnoses for these patients. Confusion, anemia, incontinence, and weakness were also identified on the charts as frequent problems but are generally considered manifestations of a disease. Patients with cancer most frequently experienced bowel obstruction, anorexia, spinal cord compression, superior vena cava syndrome, infection, pneumonia, pleural effusion, and electrolyte imbalance. Nurses written documentation of symptoms experienced by the patients did not significantly differ after having the educational intervention except regarding identifying and documenting confusion (t = 3.13; P G.002). Table 2 indicates the number of documented symptoms experienced by patients before and after the RN educational intervention. It is evident, however, that nurses increased their documentation of symptoms in every area after the in-service training. There were more statistically significant differences in nurses frequency of documentation of interventions in the patients charts after the educational class, which pertained to dyspnea (t = 2.39; P G.02), confusion (t = 3.37; P G.0013), and pain (t = 2.24; P G.02). Table 3 indicates that in every symptom area there was an increase T a b l e 1 Highest Frequency Medical Diagnoses of Long-Term Care Patients n =64 Hyperlipidemia 48 Hypertension 46 Coronary artery disease/atherosclerotic heart 46 disease Diabetes mellitus 33 Hypothyroidism 30 Osteoarthritis 27 Atrial fibrillation 27 Chronic obstructive pulmonary disease 25 Cancer (bladder, breast, colon, bone, prostate) 8 Heart failure 13 Parkinson s disease 13 Cerebrovascular accident 13 Chronic renal failure 8 Depression 8 Anxiety disorder 7 Dementia 3 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 9, No. 6, November/December

4 Documented Symptom Experienced T a b l e 2 Frequency of Documented Symptoms Experienced Before and After RN Educational in documentation of interventions for patients. Table 4 depicts frequency of documented, related outcomes for patient symptom management after the educational inservice training, nurses documented more frequently regarding all symptoms, and the following areas were statistically 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). v DISCUSSION Frequency Before Frequency After Fatigue Anorexia Depression Dyspnea Nausea & vomiting Anxiety Confusion a Diarrhea Pain Constipation 8 15 a t = 3.13; P G The results in this convenience sample indicated that older adults have multiple needs. Knowing that educational in-service training assisted in increasing documentation of symptom management, especially regarding outcomes rendered for specific problems, is important information. Also being aware of what symptoms are most frequently observed in these two LTC agencies should assist with anticipating what other older adults with similar illnesses experience in other LTC facilities. Results of this study can help to prevent or lessen certain symptoms from occurring and incorporate these findings into promoting best practices for older adult symptom management. Nurses tended to document most comprehensively on the patient s response to pharmacological intervention, specifically for confusion and discomfort. Often there was no documentation noted for nonpharmacological actions. There was more frequent documentation of intervening for dyspnea, confusion, and pain. Nurses considered fatigue, depression, dyspnea, confusion, constipation, and pain worth notifying a physician for additional interventions and documented more frequently the outcome of their interventions, but there was little documentation of collaboration with the physician on the other symptoms. Communication techniques that keep the family and patient interacting consistently with care providers are essential. Staff awareness of changes in management strategies for each patient should be a priority. Patients recommended a 24-hour shift collaborative board or communication book in which individualized notes regarding updates and changes in the care of each patient could be initiated. Development of an interdisciplinary palliative care team could be developed at LTC facilities to improve the holistic approach of patient care. Sleep disturbances were identified 37% of the time by the patients whose charts were reviewed. It seemed that the nurses perceived the sleep problem to be a manifestation of a drug the patient was taking, discomfort or pain, anxiety, or gastrointestinal problems Documented Symptoms Experienced T a b l e 3 Frequency of Documented s Given for Symptoms Experienced Before and After Frequency Before Frequency After Fatigue Anorexia Depression Dyspnea a Nausea & vomiting Anxiety Confusion b Diarrhea Pain c Constipation 8 15 a t = 2.39; P G.02. b t = 3.37; P G c t = 2.24; P G JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 9, No. 6, November/December 2007

5 (eg, indigestion, or diarrhea). Only 22% of the patients had a prescription sleep aid. Assessment of sleep pattern is another symptom that needs more study in the future, especially with regard to its relationship to overall well-being. This study did not focus on drug interactions and potential side effects of polypharmacy with older adults. It was, however, noticeable that some symptom problems, such as constipation, confusion, and fatigue, could be a direct result of the number of medications a patient was taking. The average number of prescribed medications/day was six, and when overthe-counter drugs were added, the mean number of drugs/day for each patient was seven. Although overall well-being or satisfaction with life was not assessed in this study, it would have been helpful to know if patients felt that they drew upon their religion or spiritual beliefs on a daily basis. Although 98% of patients charts revealed a specific religion, one cannot assume the person had deep values and beliefs regarding this. One would think that how a person viewed his or her overall well-being would have a dramatic impact on symptom intensity and frequency. It also would be helpful to collect data regarding family satisfaction with their family members dying process and death in an LTC facility so that improvements could be made. The literature indicated that there is a general consensus of what constitutes a quality EOL time, and it includes physical comfort, a spiritual or psychological well-being for patient and family, access and control by patient/family of decisions regarding treatment, continuity of care, and family adjustment after death. 24 By improving practice, as measured by increased number of documented interventions and positive patient symptom-related outcomes, higher quality care can be given. Nurses and other healthcare providers cannot assume what is best for their patients; rather, they must be knowledgeable enough to inquire about patient symptoms, provide interventions, and evaluate patient outcomes. v CONCLUSIONS Nurses improved their knowledge base on symptom management in palliative care, as evidenced by increased post-test scores, and improved practice, as measured by increased frequency of documented interventions and patient response to symptom management. Findings indicated that more education of nurses in LTC should further improve patient outcomes Documented Symptom Experienced T a b l e 4 Frequency of Documented Patient-Related Outcome from s Given for Symptoms Experienced Before and After regarding symptom management in palliative care. By introducing palliative care versus hospice care for all patients in nursing homes, symptom management can be better facilitated. Acknowledgments Appreciation goes to the staff and patients at the two participating nursing homes, Marissa Glassman, Jacqueline Spano, and Elizabeth Lucas (student data collectors), Dr. Deborah Sherman (Associate Professor and Coordinator of the Palliative Care Nurse Practitioner Program at New York University), who consulted with this work, and the Gustavus and Louise Pfeiffer Research Foundation, which assisted in funding this project. References Frequency Before Frequency After Fatigue 5 14 Anorexia a 6 12 Depression b 8 18 Dyspnea c Nausea & 9 15 vomiting Anxiety 6 13 Confusion d Diarrhea 7 15 Pain e Constipation f 4 15 a t = 2.27; P G b t = 2.64; P G c t=3;p G d t = 3.76; P G e t = 5.02; P G f t = 2.42; P G Mezey M, Capezuti E, Ulmer T. Care of older adults. Nurs Clin North Am. 2004;3:xiii-xx. JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 9, No. 6, November/December

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