Journal of Gerontological Nursing

Feature Article 

End-of-Life Education and Discussions With Assisted Living Certified Nursing Assistants

Wendy L. Mohlman, MS, RN; Kara Dassel, PhD; Katherine P. Supiano, PhD, LCSW, FGSA, FT; Michael Caserta, PhD, FGSA

Abstract

In previous work, the current researchers examined attitudes and experiences of certified nursing assistants (CNAs) providing end-of-life (EOL) care in an assisted living facility (ALF). Results showed that 70% of participating CNAs felt unprepared to provide EOL care, largely due to not having received prior EOL care education within their schools or workplaces. Therefore, the goal of the current study was to implement and evaluate EOL and postmortem education to ALF CNAs. A focus group of 14 CNAs within an ALF was provided EOL education pertaining to the physiological and psychological changes observed in patients nearing EOL and postmortem care. Immediately following training, CNAs participated in a 30-minute focus group in which they discussed their experiences and educational needs regarding EOL care. Responses were recorded, transcribed, and analyzed for common themes using descriptive qualitative inquiry. All participants reported that CNA programs need to place greater emphasis on teaching EOL care, and 80% desired continuing education on EOL care through their employers. There is a need for CNAs to receive EOL care education to understand the psychological and physical signs and symptoms associated with the dying process to provide best practices in postmortem care. [Journal of Gerontological Nursing, 44(6), 41–48.]

Abstract

In previous work, the current researchers examined attitudes and experiences of certified nursing assistants (CNAs) providing end-of-life (EOL) care in an assisted living facility (ALF). Results showed that 70% of participating CNAs felt unprepared to provide EOL care, largely due to not having received prior EOL care education within their schools or workplaces. Therefore, the goal of the current study was to implement and evaluate EOL and postmortem education to ALF CNAs. A focus group of 14 CNAs within an ALF was provided EOL education pertaining to the physiological and psychological changes observed in patients nearing EOL and postmortem care. Immediately following training, CNAs participated in a 30-minute focus group in which they discussed their experiences and educational needs regarding EOL care. Responses were recorded, transcribed, and analyzed for common themes using descriptive qualitative inquiry. All participants reported that CNA programs need to place greater emphasis on teaching EOL care, and 80% desired continuing education on EOL care through their employers. There is a need for CNAs to receive EOL care education to understand the psychological and physical signs and symptoms associated with the dying process to provide best practices in postmortem care. [Journal of Gerontological Nursing, 44(6), 41–48.]

Residential care communities, referred to as assisted living facilities (ALFs), have grown in popularity, largely due to the increasing number of older adults in need of 24-hour assistance with activities such as medication management, nutrition support, social interaction, recreation, and residential living, all of which ALFs provide (Resnick & Mitty, 2009).

According to a 2014 report by the Centers for Disease Control and Prevention (CDC), 69% of 835,200 older adults living in ALFs will develop disabilities before death, and 35% will need to reside in an ALF or other type of long-term care setting (CDC, 2016; Family Caregiver Alliance, 2015). The National Center for Assisted Living reports that 30% of residents will die in ALFs (Orestis, 2013). ALFs promote an aging-in-place model in which staff adjust services, as needed, to respond to residents' physical changes and needs, including offering home health and hospice services, which allow residents to remain in the ALF despite increasing frailty or debilitation (Resnick & Mitty, 2009).

ALFs use certified nursing assistants (CNAs) more than any other type of long-term care providers and services in the United States, with CNAs comprising 82% of staff in ALFs (CDC, 2016). Known as the primary professional caregivers within all types of nursing facilities, CNAs provide the majority of assistance to residents, including activities of daily living (ADLs), such as bathing, dressing, ambulation, eating, toileting, and hygiene (McMullen, Resnick, Hansen, Miller, & Rubinstein, 2015).

With an increasing aging population, particularly in the oldest old category (i.e., age 85 and older), end-of-life (EOL) care within nursing communities has become a common practice, and by 2020, 40% of residents ages 65 and older are predicted to die in nursing facilities (Tilden, Thompson, Gajewski, & Bott, 2012). CNAs' involvement with residents also means CNAs play a critical role in the provision of chronic and EOL care (Fryer, Bellamy, Morgan, & Gott, 2016). Although being a CNA is a physically and emotionally challenging job, CNAs possess a strong desire to provide compassionate, effective EOL care, despite often lacking confidence and knowledge in pain management and comfort measures (Ersek, Kraybill, & Hansberry, 1999).

Training on EOL and postmortem care is not typically taught in standard CNA educational programs. The standard CNA curriculum focuses on fundamentals of nursing assistant skills, introduction to health care systems, and assisting with ADLs, among other related topics (Malik & Chapman, 2017). Nurses' aides are taught within their state-approved training programs, in which the United States government requires ≥75 hours of training and that ≥16 of the 75 hours comprise hands-on skills (Kaufman, n.d.). The 2016 National Nurse Aide Assessment Program (NNAAP®) written examination content requires nurses' aides to be tested on the following topics: ADLs; basic nursing skills (i.e., infection control, safety/emergency, data collection, reporting); restorative skills (i.e., prevention, self-care, independence); psychosocial care skills; and the role of the nurse aide (i.e., communication, client rights, legal and ethical behavior) (National Council of State Boards of Nursing, n.d.). Unfortunately, in didactic and required skill and core competencies, CNAs are not required to receive EOL or postmortem care education. A review of the literature concerning CNAs' palliative care education reveals that EOL education and trainings are more readily provided in hospitals, long-term care, and skilled nursing settings, but a gap exists in CNA clinical education within ALFs, despite the majority of ALF workforce comprising CNAs. An outdated CNA curriculum and training does not address the growing needs of the geriatric population and provides only minimal EOL skills (McMullen et al., 2015).

Because CNAs provide most direct hands-on care to residents and may develop close ties with them, CNAs may feel unprepared for the death of their residents (van Riesenbeck, Boerner, Barooah, & Burack, 2015). It is imperative that ALF CNAs are provided the training they need to deliver person-centered, quality care at EOL, including knowledge about dying processes, nonpharmacological interventions for management of symptoms, facilitating communication with nurses and staff, and hospice services. In addition, direct care workers in nursing homes consistently have lower levels of knowledge about EOL issues, including ethical and practical dilemmas and what to do in such situations, treatment options, patient's family discord at EOL, and/or care regimens that conflict with patient needs or preferences (Cagle, Unroe, Bunting, Bernard, & Miller, 2017).

The impetus for the current project came from a previous pilot study (Mohlman, 2016) that used focus groups to determine whether training CNAs on EOL care and providing bereavement support was related to CNAs' grief experience and coping ability while caring for dying residents within an ALF Memory Care unit. During the focus groups, 10 CNAs employed at the ALF were asked questions about their experiences caring for dying residents and what training or education they had previously received to provide care for residents at EOL and time of death. In addition, CNA participants were asked to describe what information should be discussed when providing education on EOL and postmortem care to CNAs.

Results from the previous study indicated CNAs' desire to learn about physical changes related to dying and appropriate ways to deliver comfort care to a dying resident, and receive more in-depth training on performing postmortem care. When discussing experiences of caring for dying residents, one CNA explained, “…I went online and Googled what a body does when it dies so I wouldn't be scared when I saw it.” In terms of prior education and training on EOL, another CNA said, “Training? What training? I didn't even learn about this in school.” CNAs develop relationships with residents. One CNA participant expressed her sadness as she stated, “If I hear a resident is dying, then I want to call in sick to work.” Of 10 participating CNAs, 70% had not received prior education or training on EOL or postmortem care before working as a CNA. Another 70% agreed that training on EOL and postmortem care would be beneficial, particularly if education focused on signs and symptoms of dying, the physiological body changes associated with EOL, and guidance and direction on what types of nonpharmacological interventions provide comfort for dying residents. Finally, participants recommended additional conversations on postmortem care to help relieve fear and anxiety.

Based on information gathered in the earlier pilot study, the goal of the current study was to provide and evaluate EOL education to CNAs working in an ALF. Information shared with participants concentrated on signs and symptoms of dying in the early through late stages and included psychological and physiological aspects of the dying process. In addition, the topic of nutrition at EOL was presented, particularly the natural dehydration process and the benefits/burdens of artificial nutrition due to changes in appetite and digestion. The purpose of this training is to help CNAs better understand the dying process and postmortem care. The content of training was largely informed by Dunn's (2009) book, Hard Choices for Loving People (Table 1). The outline of the book was distributed to participants and served as a guide to presenting the material and ensuing discussion. Education focused on psychological and physiological changes seen at EOL, goals of comfort measures at EOL, and delivering postmortem care. Specifically, objectives of training were that CNAs would be able to verbalize understanding of:

  • psychological and physical signs and symptoms of EOL,
  • the concept of transition from “curative” to “comfort” measures,
  • a body's natural dehydration process and potential benefits/burdens related to feeding and/or artificial nutrition at EOL, and
  • appropriate ways to deliver postmortem care.

Outline for End-of-Life Care and Postmortem Education for Certified Nursing Assistants (CNAs)

Table 1:

Outline for End-of-Life Care and Postmortem Education for Certified Nursing Assistants (CNAs)

Training was immediately followed with an informal focus group structured to facilitate discussion of personal and professional experience of EOL care by CNAs and discern training impact and value.

Method

Procedure

The educational session and data collection for the current project were conducted at an ALF located in a metropolitan area within the intermountain west region of the United States. A request for Institutional Review Board (IRB) approval was submitted and the project was determined to be a quality improvement project that did not meet definitions of human subjects research according to federal regulations; therefore, the study was exempt from IRB oversight. All currently employed CNAs who provided regular direct care to residents were eligible to participate in the EOL educational training and focus group that followed. The project was described during monthly staff meetings by the Director of Nursing, and interested CNAs volunteered to participate in the study.

Fourteen of 36 CNAs volunteered to participate in the educational session, which comprised 60 minutes of educational training and 30 minutes dedicated to a focus group discussion in which participants were asked several open-ended questions regarding their experiences providing EOL care and suggestions for future trainings.

Design

The current study was based on qualitative descriptive inquiry (Sandelowski, 2000, 2010) in which researchers explored participants' educational experience on EOL and postmortem care while using focus group discussion to obtain feedback and promote knowledge and awareness. Using a data-near approach (Sandelowski, 2010) allowed the acceptance of CNA accounts as given and provided better insight into CNAs' experiences, questions, and continuing education needs related to providing care to residents at EOL. The data-near approach permitted discernment of the CNAs' experiences and the meaning of care as it relates to continuing education on EOL.

Data Collection

The current mixed-methods study used quantitative data obtained from participants' completion of a demographic survey, as well as qualitative data based on audiorecorded participant responses in a 30-minute post-training focus group discussion. Questions asked of the participants included: (a) What questions do you have about the training and EOL care? (b) What do you feel are the biggest challenges you face when caring for a resident who is dying? (c) If I were to present this training again in the future, what feedback or recommendations do you have? (d) What information or tools would be helpful when providing care to a resident at EOL? Post-training focus group discussions were audiorecorded for transcription and analysis using a simplified descriptive qualitative approach.

Data Analysis

Descriptive statistics were used to analyze the demographic information obtained from participants. Transcriptions of the focus group discussion were analyzed using a simplified descriptive qualitative approach in which exploratory themes were determined from recorded conversations with CNAs. The open-ended responses were identified, referencing communication, participants' expressions of feelings, and additional questions pertaining to delivering EOL and postmortem care.

Results

Participants were CNAs ages 18 and older who were employed and providing direct care to residents in the ALF that served as the study site. Participants were predominantly female (86%). Approximately two thirds (64%) were ages 18 to 24, 21% were ages 25 to 34, and two additional CNAs were between ages 35 and 64. The length of time working as a CNA varied between <3 months (36%) to 6 to 10 years, with 21% having been CNAs for 1 to 2 years. All 14 CNAs had additional work experience in other care settings, including skilled nursing facilities (35%), post-acute rehabilitation facilities (14%), and hospital settings (7%). Participants self-identified as White (57%) or Hispanic (36%), and one (7%) CNA reported Native American ethnicity. Forty-three percent of participants were high school graduates or equivalent, 36% had some college but no degree, and 21% had obtained an associate degree. Sixty-four percent of participants reported having received prior EOL and postmortem education in either CNA schooling (43%) and/or through work experience (50%). The remaining 36% of participants had not received EOL, hospice, or postmortem care education (Table 2).

Demographic Survey Results (N = 14)

Table 2:

Demographic Survey Results (N = 14)

Analysis of transcribed data from the focus group discussions identified three themes: (a) Need for Greater RN and CNA Communication, (b) Anxiety Related to Anticipation of Death, and (c) Need for Additional EOL and Postmortem Care Training.

Participant responses from the focus group (Table 3) indicated a lack of communication between RNs and CNAs. Statements or questions from participants such as, “I wish we talked more about the patients who are slowly getting worse…” and “…share more stories about people you have taken care of in hospice so we can learn...” express CNAs' desire to be more aware of residents' conditions and learn through others' experiences when providing EOL care.

Illustrative Certified Nursing Assistants' (CNAs) Responses and Exploratory Themes

Table 3:

Illustrative Certified Nursing Assistants' (CNAs) Responses and Exploratory Themes

Multiple participants expressed worry and concern related to providing care to residents at EOL or time of death. Responses such as “I'm scared” and “I worry” indicate feelings of anxiety and fear when delivering EOL and postmortem care. Participants wanted to know the best approaches to providing care when they felt scared, frustrated, or worried about the situation.

Finally, questions arose from participants requesting more detailed education related to what is meant by “actively dying” and what can be done for a patient with labored, Cheyne–Stokes breathing. CNAs' inquisitiveness demonstrates need for additional and continuing EOL and postmortem care education.

Discussion

The three themes that emerged from the focus group discussion highlighted the experiences, fears, and anxieties of CNAs providing EOL care. CNAs exhibited a desire and eagerness to gain knowledge not only to perform their job effectively, but also to provide compassionate care to dying residents at EOL. The current descriptive qualitative analysis highlights CNAs' attitudes of caring for residents at EOL, their hope for improved communication, and their desire to receive ongoing education on EOL and postmortem care.

The exploratory theme of Need for Greater RN and CNA Communication demonstrates how inadequate communication between professions can affect quality of care. Coordination of care and communication between health care workers can have a significant impact on EOL. Better communication between direct care providers (e.g., CNAs, nurses) has been found to be significantly associated with an improved ability to deliver EOL care to residents and reduce hospitalizations prior to death (Temkin-Greener, Li, Li, Segelman, & Mukamel, 2016). In addition, a study of CNAs revealed that familiarity with residents promotes development of relationships, as well as CNAs' expertise in making care decisions on residents' behalf (Carpenter & Thompson, 2008).

A second exploratory theme, Anxiety Related to Anticipation of Death, validates concerns of CNAs who are assigned to care for dying residents but have not received EOL education. Participant statements highlighted fears regarding tasks such as oral care, feeding a resident, and turning and repositioning a patient who may groan or exhibit pain at EOL. This finding supports earlier studies that reported CNAs who receive inadequate training feel over-whelmed and unsure of best care practices (Fitzpatrick, 2002).

The third exploratory theme, Need for Additional EOL and Postmortem Care Training and Education, draws attention to the persistent questions CNAs have about providing care to those at EOL or upon death. Participating CNAs wanted more information in terms of what to do when a patient is considered actively dying as well as what constitutes normal versus abnormal symptoms exhibited by a dying resident. One CNA expressed a desire for a “cheat sheet” that would help determine what to do for a dying patient who appears uncomfortable. When a resident transitions to EOL care, CNAs may face challenges adapting to changes associated with comfort measures. Good communication, comprehensive training in EOL and postmortem care, and previous experience with death and dying can influence CNAs in their delivery of EOL care to ALF residents (Cagle et al., 2017). In addition, CNAs report feeling a responsibility to help their residents prepare for death (Unroe et al., 2014). Collectively, these themes voice the apprehension CNAs experience in providing EOL care, concerns expressed as desire for effective communication between nurses and CNAs, education about the dying process and postmortem care, guidance in skill performance, and support for their role in EOL care.

Strengths and Limitations

Although prior research has explored CNAs' attitudes toward EOL in nursing homes, to the researchers' knowledge, the current study is the first to provide and evaluate EOL and postmortem education to CNAs employed in an ALF. However, several limitations must be acknowledged. First, the researchers' previous work and the current study were conducted in two separate facilities, one of which was a secured memory unit. Second, the studies were limited to ALF CNAs, but participant CNAs had work experience in multiple types of health care settings, including but not limited to hospitals, skilled nursing facilities, long-term care settings, independent living communities, adult day cares, and home care services. Lastly, a potential limitation of the current study is that the educator was also the evaluator; therefore, interpretation of participant statements may have bias.

Suggestions for Future Research

Further research within ALFs is warranted, as their numbers are growing due to changing demographics of the older population. Although CNAs are on the frontlines within these facilities, providing the greatest share of hands-on care, retention has been and continues to be a salient issue due to various factors, such as burnout and challenging compensation levels. The results of the current study further suggest that grief and loss experiences of CNAs and their role in retention and turnover warrant further investigation, as does the impact of EOL training on the care CNAs provide residents throughout the entire long-term care system, including but not limited to ALFs.

Conclusion

In the current exploratory study, CNAs responded favorably to receiving education in EOL and postmortem care. Findings from the researchers' previous and current studies demonstrate a need for EOL education, which may help alleviate CNAs' feelings of anxiety and improve care practices while providing specialized EOL care. Appropriate training has been shown to increase CNAs' performance and decrease turnover (Morely, 2014), Focusing on EOL education within ALFs has the potential to improve quality care, promote dignity to dying residents, and allow CNAs to feel confident in their roles as caregivers. Clinicians and educators can empower CNAs through ongoing specialized training and recognize and acknowledge their potential influence and impact on resident care. The aging population deserves competent and well-trained CNAs. Clinicians and educators must advocate for continuing education for CNAs, which in turn will promote dignity and comfort for patients at EOL.

With aging-in-place models, ALFs are slowly becoming comparable to long-term care facilities. CNAs are essential and valuable members of the health care team, and the care they provide significantly impacts resident health outcomes. Revisions of the CNA curriculum and core skill competencies would not only improve overall quality of care of patients and their family members, but also encourage CNAs to improve problem solving skills and caregiving behaviors and contribute to higher job satisfaction (McMullen et al., 2015). Moreover, emphasis on EOL and postmortem care would benefit ALFs, where older adults are choosing to reside after they can no longer live independently.

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Outline for End-of-Life Care and Postmortem Education for Certified Nursing Assistants (CNAs)

ThemeSubthemeSpecific Example
Psychological changesBehaviors

Withdrawal from people and activities

Decreased communication

Decreased energy

Changes in sleeping

Confusion/disorientation

Terminal restlessness

Agitation

Hallucinations/delusions

Skin

Poor wound healing

Excessive dryness

Skin tears and thinning of skin

Mottling

Digestive system

Changes in appetite

Changes in oral mucosa

Changes in elimination (i.e., bowel, urine)

Difficulty swallowing

Cardiac system (e.g., heart, blood circulation)

Changes in body temperature

Rapid or slow heart rate

Decreases in blood pressure

Changes in skin color

Respiratory system

Irregularities of breathing (e.g., fast, slow, apnea)

Use of accessory muscles for breathing

Open-mouth breathing

Coughing, secretions

Cheyne–Stokes breathing

Beginning comfort care measuresTreatments that end when starting comfort care/hospice

Full code becomes do-not-resuscitate/do-not-intubate

Hospitalizations (i.e., no surgeries, procedures, emergency department presentations)

Feeding tubes/artificial nutrition

Intravenous fluids

Antibiotic agents (typically used for symptom relief)

CNAs' role in providing comfort careWhat brings comfort to a dying resident?

Skin care and hygiene

Appropriate clothing (i.e., loose fitting, comfortable, breathable)

Incontinence care (i.e., using briefs, barrier cream, keeping clean/dry briefs)

Feeding (on demand)

Safety (e.g., preventing falls)

Reporting changes in condition, staff communication

Postmortem careDemonstrating respect when delivering care of the body

Changing briefs/undergarments

Bathing body

Dressing in clean clothing

Combing hair

Providing oral care

Applying makeup if desired

Presentation of body

Preparing area and privacy for the family of deceased

Cleaning/straightening area (e.g., taking out trash, using odor neutralizer if needed)

Providing extra chairs if needed

Serving drinks/water

Supplying tissues

Demographic Survey Results (N = 14)

Variablen (%)
Gender
  Female12 (85.7)
  Male2 (14.3)
Age (years)
  18 to 249 (64.3)
  25 to 343 (21.4)
  35 to 441 (7.1)
  55 to 641 (7.1)
Ethnicity
  White/Caucasian8 (57.1)
  Hispanic/Latino5 (35.7)
  Native American1 (7.1)
Length of time as CNA
  0 to 3 months5 (35.7)
  3 to 12 months2 (14.3)
  1 to 2 years3 (21.4)
  3 to 5 years2 (14.3)
  6 to 10 years2 (14.3)
Educational backgrounda
  High school graduate or equivalent6 (42.9)
  Some college, no degree5 (35.7)
  Trade/technical/vocational1 (7.1)
  Associate degree3 (21.4)
Previous employment as CNA
  Assisted living14 (100)
  Long-term care5 (35.7)
  Rehabilitation facility2 (14.3)
  Hospital1 (7.1)
Training in end-of-life/hospice/post-mortem care
  Yes9 (64.3)
    On-the-job training7 (50)
    CNA school6 (42.9)
    Other3 (21.4)
  No5 (35.7)

Illustrative Certified Nursing Assistants' (CNAs) Responses and Exploratory Themes

Exploratory ThemesIllustrated Responses
Need for Greater RN and CNA Communication

“I wish we talked more about the patients who are slowly getting worse, ‘cause I come to work and I hear that so and so resident is now on hospice or is dying…”

“What if I can't find someone to help me with the postmortem care; what should I do?”

“Knowing what to say to the families and what to do for the patients.”

“Maybe share more stories about people you have taken care of in hospice, both good and bad experiences, so we can learn from them.”

Anxiety Related to Anticipation of Death

“It's frustrating when we are told to keep a patient in bed cause they are dying but they keep trying to get out of bed and they are anxious and mad and stuff. What do we do?”

“I'm scared I'll be the one trying to help a resident eat or drink and they will choke. I know I should be doing oral care but I get scared to put anything in their mouth.”

“I don't like having to turn and reposition patients who are dying. They moan and groan and I feel so bad.”

“I worry I'll be the one who finds them dead. Then what?”

Need for Additional End-of-Life and Postmortem Care Training and Education

“I wish there was a cheat sheet to tell us what to do for a dying resident when they look uncomfortable…or the family wants us to do something for them and I don't know what is best.”

“Can you explain more about what is meant by ‘actively dying’? When is a patient considered ‘active’?”

“The breathing, what's it called? Death rattle? That is so scary…What do we do about that?”

“What is considered normal and abnormal for someone dying?”

Authors

Ms. Mohlman is Doctoral Nurse Practitioner Student, Dr. Dassel is Associate Professor, Dr. Supiano is Associate Professor, and Dr. Caserta is Professor, Gerontology Interdisciplinary Program, and Robert L. & Joyce T. Rice Presidential Endowed Chair in Healthy Aging, College of Nursing, University of Utah, Salt Lake City, Utah.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Wendy L. Mohlman, MS, RN, Doctoral Nurse Practitioner Student, College of Nursing, University of Utah, 10 S. 2000 E., Salt Lake City, UT 84112; e-mail: Wendy.Mohlman@utah.edu.

Received: September 18, 2017
Accepted: March 05, 2018
Posted Online: April 23, 2018

10.3928/00989134-20180327-01

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