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Communicating with Patients and their Families about Palliative and End of Life

Communicating with Patients and their Families about Palliative and End of Life: Comfort and Educational Needs of Staff RNs

Cheryl Moir, RN/CHPN [Care Coordinator], Home Care/Hospice, St. Luke’s Health System, 190 E. Bannock St., Boise, ID 83712

Renee Roberts, BSN RN [Clinical Nurse], Bone Marrow Transplant, University of Colorado Hospital, 12505 E. 16th St, Aurora, CO 80045

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Kim Martz, PhD RN [Assistant Professor], Boise State University, 1910 University Drive, Boise, ID 83725

Judith Perry, MSN, ACHPN [Nurse Practitioner—Board Certified], and Home Care/Hospice, St. Luke’s Health System, 190 E. Bannock St., Boise, ID 83712

Laura J. Tivis, PhD, CCRP [Nursing Research Director] St. Luke’s Health System, 190 E. Bannock St., Boise, ID 83712

Abstract

Introduction—Effectively discussing palliative care with patients and families requires knowledge and skill. The purpose of this study was to determine perceived needs of inpatient

nurses for communicating with patients and families about palliative and end of life care.

Method—A non-experimental design was utilized. Sixty inpatient nurses completed the End of Life Professional Caregiver survey.

Results—Effects for years of experience and unit were found [F(9,131.57)=2.22, p=0.0246; Wilk’s Λ=0.709 and F(6,110)=2.49, p=0.0269]. For all three domains (Patient and Family-

Centered Communication, Cultural and Ethical Values, and Effective Care Delivery) years of

nursing experience was positively associated with comfort in communicating about end of life

care. Oncology nurses reported were most comfortable with regard to patient and family-centered

communication.

Discussion—The success and sustainability of this service is dependent on education for healthcare providers. Studies are needed to determine best ways to meet this educational

challenge.

Keywords

Palliative Care; End of Life Care; End of Life Professional Caregiver survey; Patient-Centered Communication

Direct correspondence to: Cheryl Moir RN/CHPN, St. Luke’s Health System, Hospice and Palliative Care, 190 E. Bannock St., Boise, ID 83712; moirc@slhs.org; Telephone: (208) 850-3498; FAX: (208) 381-2725.

Conflicts of Interest The authors have no conflicts of interest to report.

HHS Public Access Author manuscript Int J Palliat Nurs. Author manuscript; available in PMC 2016 March 01.

Published in final edited form as: Int J Palliat Nurs. 2015 March ; 21(3): 109–112. doi:10.12968/ijpn.2015.21.3.109.

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Introduction

Our review of the literature and our own experiences led us to postulate that inpatient staff

nurses may not be prepared to provide optimal care to end of life (EOL) and palliative care

patients and their families (Chan and Webster, 2011; Patel, Gorawara-Bhat, Levine, and

Shega, 2012; Prem, Karvannan, Kumar et al., 2012; Agustinus, Wai Chi Chan, 2013).

Palliative care patients can continue to seek curative treatments while evaluating their goals

and care needs. End-of-life (EOL) care patients usually are no longer receiving aggressive

curative treatment; instead they are receiving comfort care only. In the US, the word

“hospice” is interchangeable or synonymous with EOL care. These patients usually die at

home or in the intensive care unit limiting the contact a regular staff nurse may have in

providing care to them. Nurses skilled and comfortable in communicating with patients and

families about EOL (hospice) and palliative care may improve the quality of life and patient

satisfaction in the hospital setting.

Some patients transition during a hospital stay from curative-based care to hospice care.

Whether the transition is made smoothly and gradually, depends on the kind of

communication and education patients receive from doctors, nurses, and other caregivers

while in the hospital (Adams, 2005; Beck, Tornquist, Brostrom and Edberg, 2012; Brummen

and Griffiths, 2013). Palliative care options should be provided in a way that helps patients

understand its goals and how it differs from end of life care. However, many people opt for

palliative care only when they are very close to the end of their lives (Raljmakers et al.,

2011; Wilson, Gott and Ingleton, 2011).

It seems reasonable to think that a lack of education and accompanying uneasiness among

clinical nurses in discussing palliative care with patients and their families may negatively

impact the transition from curative-based care to hospice care. The current research focused

on the role of the nurse during the transition in patients’ lives from curative to palliative

care. The study aim was to determine the perceived educational needs of inpatient staff

nurses in our facility when communicating with patients and families about palliative and

EOL care.

Study Design / Methodology

A non-experimental survey design was utilized to examine differences by the age of the

nurse, years of nursing experience, and the unit on which he/she worked.

To measure palliative and EOL educational needs among nurses (i.e., their current degree of

comfort in caring for this population) the End-of-Life Professional Caregiver Survey was

distributed to a convenience sample of clinical nurses working exclusively in telemetry,

oncology and critical care units (EPCS; Lazenby, Ercolano, Schulman-Green and McCorkle,

2012). Permission to use the EPCS was granted by the authors. The EPCS is a 28-item,

psychometrically valid scale developed to assess the palliative and EOL educational needs

of professionals and was validated in a large study encompassing doctors, nurses and social

workers (Lazenby et al., 2012). For each item, a Likert-style scale is presented where 1=Not

at All, and 5=Very Much. Items represent care-provider comfort with a variety of situations

related to palliative and EOL care (e.g., “I am comfortable helping families to accept a poor

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prognosis”). Higher scores indicate greater skill or comfort. Three distinct factors were

identified by Lazenby et al. (2012): 1) Patient and Family-Centered Communication

(PFCC), 2) Cultural and Ethical Values (CEV), and 3) Effective Care Delivery (ECD). See

Lazenby et al (2012) for factor loading (p.429).

Data collection began following approval from the hospital Institutional Review Board

(IRB). Permission to distribute the survey was also acquired from individual unit managers

prior to distribution. Data was collected over a one month period. We had sixty participants

respond.

The survey was conducted at a 378 bed hospital in the intermountain region. Telemetry,

oncology, and critical care units were chosen for their patient populations; that is, patients

on these units were most often among those transitioning from curative based care to end of

life care. The three units employed a combined clinical nursing staff of approximately 215

(telemetry unit 90, oncology 35, and critical care 90). Recruitment emails were sent to 175

clinical nurses (identified from the 215 as having active email addresses) employed on the

designated units, requesting participation in the research project. In addition, recruitment

flyers were also posted on the selected units to inform nurses of the project and request

participation. Online and paper-and-pencil survey options were available. Both options were

anonymous. Paper and pencil surveys were made available on each unit. An investigator-

addressed envelope was attached to each paper survey for nurses to return the completed

instrument through interoffice mail to retain anonymity. The paper and pencil surveys was

kept in a locked office and shredded after data collection was complete. The online survey

was hosted by REDCap at the University of Washington, Institute of Translational Health

Sciences (https://www.iths.org/).

Data Analysis and Results

Sixty nurses participated. Based on the number of active email addresses within the three

units, this reflects a 34% participation rate. Data were analyzed using SAS 10.0. Descriptive

statistics and Chi-Square were used to analyze demographic information. PFCC, DEV and

ECD domain scores were calculated as described by Lazenby et al (2012). Mulitvariate

analysis of variance (MANOVA) was used to determine overall effects of age, unit, and

years of nursing experience across domain scores. Duncan’s Multiple Range Test was used

to conduct post-hoc domain comparisons as appropriate.

Sample distribution by unit was similar, with about 37% of respondents were from Critical

Care, about 26% from Oncology, and about 37% from Telemetry. The majority of

respondents were under 50 years of age: 41% were younger than 30, 43% were between 30

and 49, and only 16% were 50 or above. Participant age did not differ by work unit

[Likelihood Ratio Χ2 (6, N = 58) = 5.68, p = .46]. The majority of respondents had two to 10

years of nursing experience: 12% had less than two years, 33% had two to five year, 29%

had five to ten years of experience, and 27% had more than 10 years. Years of experience

did not differ by work unit [Likelihood Ratio Χ2 (6, N = 60) = 9.98, p = .13].

MANOVA revealed that there was an overall effect of experience and unit, but no effect of

age [Experience: F(9,131.57)=2.22, p=0.0246; Wilk’s Λ=0.709; Unit: F(6,110)=2.49,

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p=0.0269; Wilk’s Λ=0.775; Age: F(9,126.7)=1.19, p=0.3083; Wilk’s Λ=0.821]. Duncan’s

Multiple Range test revealed that for all three domains, years of nursing experience was

positively associated with comfort levels; nurses with less than two years of experience had

significantly lower comfort scores than those with five or more years (see Table 1). In

contrast, only the PFCC domain revealed differences by unit; not surprisingly, oncology

nurses reported significantly higher comfort levels than critical care or telemetry nurses with

regard to patient and family-centered communication (see Table 2).

Discussion

Overall, the data suggest that the nurses in our study are relatively comfortable with their

skill in the areas assessed by the EPCS. The scores were moderately high; averaging

between 3 and 4 (‘Somewhat’ and ‘Quite A Bit’) for most domains with more experienced

nurses scoring higher than those with less nursing experience. Not surprisingly, oncology

nurses scored highest and significantly higher than their telemetry counterparts, on the

PFCC domain. This likely reflects their greater degree of experience communicating with

patients and their families about palliative and end of life care options; validating of both the

instrument and the nurse populations in our study.

Scores were lowest within the ECD domain suggesting that all nurses, across patient

population areas, may benefit from end of life education in order to increase their own skill

and comfort in caring for these patients. ECD items focus on familiarity with palliative and

EOL care, effectiveness at helping in end of life patient situations, and resource availability

(Lazenby et al., 2012). Anecdotally, several nurses reported to the study team members that

they thought EOL education would benefit them in communicating with patients and their

families

The transition to palliative and/or EOL care can be difficult for patients and their families.

During this transition they may have many questions as they sort through the emotional and

logistical aspects of the situation. Questions include: what is the difference between

palliative and EOL care, , how does one access these services and what can one expect from

them. In order to answer these questions, health care staff must possess a basic knowledge of

palliative and EOL care. This study demonstrated that the less experienced nurses expressed

some discomfort in communicating with patients and families at end of life. Hence, the

authors suggest further exploration of educational needs among staff nurses regarding

palliative and EOL care. This exploration may lead to the development of educational

interventions designed to increase nurses’ comfort in speaking to patients and their families.

Therefore future studies should focus on assessing specific educational needs of non-

oncology clinical nurses. These nurses are unlikely to routinely care for end of life patients

and may not understand the dilemma patients and their families face when transitioning

from palliative to EOL care. .

Palliative care and EOL patients are found in hospital and community settings, therefore,

any educational intervention should include health providers in the outpatient areas and

especially in home care services.

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Limitations

There were several limitations to this study. First, our sample was relatively small (despite

representing one-third of nurses in the three areas of interest). While a 30% response rate

seems reasonable, internal employee surveys can be much higher (CustomInsight, 2014;

EngagedMetrics, 2013; Surveygizmo, 2014). However, because this was a voluntary

research study of nurses by nurses, and not an employer initiated engagement-type survey,

response rates in the 80-90% range are not reasonable or expected. Even so, the results of

this study may not be generalizable and should be interpreted with caution. Another

limitation to this study was the restricted population of nurses used (i.e., from one hospital).

A final limitation to this study is a small data collection flaw within the demographic portion

of the information collected. Specifically, respondents were asked to indicate their years of

nursing experience: less than 2 years, 2-5 years, 5-10 year, or >10 years. Post-hoc, the

investigators became aware that those with five years of experience may have chosen 2-5 or

5-10 years. No feedback was received with regard to this issue to suggest which category

individuals with five years chose. Because the study was anonymous, there was no way to

resurvey the respondents in order to ascertain the correct category for this subgroup. As

Table 1 shows, the domain scores did not differ for those with 2-5 years and 5-10 years. It is

possible that there may have been differences if the categories had been designed with

exclusivity (e.g., 2-5, 6-10).

Implications and Conclusions

This study has important implications around the need for enhanced communication with

patients and their families about palliative and EOL care, particularly among less-

experienced nurses and among those not working in oncology units. The transition point

from curative to palliative care can be a challenging time for patients and for nurses as well,

and developing skills and knowledge in this area could help patients and their families make

smoother transitions. Our study shows a moderate level of perceived skill, with a stronger

need for additional knowledge among those nurses with less experience both in terms of

years as a nurse and patient population. Understanding the best way to develop that

education is an important subject for future researchers.

We concluded additional education for less experienced nurses could increase comfort levels

in all domains and improve care for end of life patients. Experienced nurses showed the

highest levels of skill regarding addressing EOL and palliative care needs, and those with

less experience could benefit in particular from education.

The survey used in this study will be applied to home health nurses to assess their level of

comfort with palliative care patients on their service. Utilizing the responses from the

survey, online educational modules will be developed by an inter-professional committee to

address basic palliative nursing care areas identified by survey participants as an area of

educational need.

Palliative and EOL care will expand and move beyond hospitals to home-based care, long-

term care and other community settings. The success and sustainability of this service will

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be dependent upon meaningful training of all health care providers. Further studies will be

needed to determine how best to meet this educational challenge.

Acknowledgements

The authors wish to thank Mr. Rick Tivis (Biostatistician), Mr. David Kent (4S Oncology Director), and Ms. Mary Lou Long (Home Care/Hospice former Director) for their contributions to this work. Special thanks to Mr. Danh Nguyen, nursing student research assistant. We also wish to acknowledge the support of the Institute of Translational Health Sciences (ITHS; grant UL1TR000423 from NCRR/NIH).

References

Adams M. Patient and care satisfaction with palliative care services: A review of the literature. ACCNS Journal for Community Nurses. 2005; 10:11–14.

Agustinus S, Chan SWC. Factors affecting the attitudes of nurse towards palliative care in the acute and long term care setting: a systematic review. JBI Library of Systematic Reviews and Implementation Reports. 2013; 11:1–69.

Beck I, Tornquist A, Brostrom L, Edberg A-K. Having to focus on doing rather than being: Nurse assistants’ experience of palliative care in municipal residential care settings. International Journal of Nursing Studies. 2012; 49:455–464. [PubMed: 22079261]

Brummen BV, Griffiths L. Working in a medicalised world: The experience of palliative care nurse specialists and midwives. International Journal of Palliative Nursing. 2013; 19:85–91. [PubMed: 23435537]

Chan R, Webster J. End-of-Life pathways for improving outcomes in caring for the dying. The Cochrane Database of Systematic Reviews. 2011; 11:1–21.

CustomInsight. [09/03/14] 2014. http://www.custominsight.com/employee-engagement-survey/ employee-survey-response-rates.asp.

EngagedMetrics. Patient and care satisfaction with palliative care services: A review of the literature. ACCNS Journal for Community Nurses. 2013; 10:11–14. http://www.engagedmetrics.com/blog/ employee-survey-average-response-rates/Adams, M. (2005).

Lazenby M, Ercolano E, Schulman-Green D, McCorkle R. Validity of the end-of-life professional caregiver survey to assess for multidisciplinary educational needs. Journal of Palliative Medicine. 2012; 15:427–431. [PubMed: 22500479]

Patel B, Gorawara-Bhat R, Levine S, Shega JW. Nurses’ attitudes and experiences surrounding palliative sedation: Components for developing policy for nursing professionals. Journal of Palliative Medicine. 2012; 15:432–437. [PubMed: 22500480]

Prem V, Karvannan H, Kumar SP, Karthikbabu S, Syed N, Sisodia V, Jaykumar S. Study of nurses’ knowledge about palliative care: A quantitative cross-sectional survey. Indian Journal of Palliative Care. 2012; 18:122–127. [PubMed: 23093828]

Raljmaker NJH, Zyulen L. v. Costantlnl M, Caracenl A, Clark JB, Simone GD, Helde AVD. Issues and needs in end-of-life decision making: An international modified Delphi study. Palliative Medicine. 2011; 26:947–953. [PubMed: 21969309]

Surveygizmo. 2014. http://www.surveygizmo.com/survey-blog/survey-response-rates/

Wilson F, Gott M, Ingleton C. Perceived risks around choice and decision making at end-of-life: A literature review. Palliative Medicine. 2011; 27:37–53.

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Table 1

Comfort Level by Years of Experience

Domain Mean ± SD (Duncan Grouping) N Experience (Years)

PFCC 3.42 ± 0.33 (C) 7 < 2

3.77 ± 0.65 (B,C) 20 2-5

4.03 ± 0.44 (A,B) 17 5-10

4.31 ± 0.48 (A) 16 >10

CEV 3.00 ± 0.60 (C) 7 < 2

3.28 ± 0.80 (B,C) 20 2-5

3.75 ± 0.51 (A,B) 17 5-10

3.92 ± 0.59 (A) 16 >10

ECD 2.79 ± 0.37 (B) 7 < 2

3.18 ± 0.87 (A,B) 20 2-5

3.33 ± 0.49 (A) 17 5-10

3.55 ± 0.58 (A) 16 >10

PFCC=Patient and Family-Centered Communication

CEV=Cultural and Ethical Values

ECD=Effective Care Delivery

Within each domain, means with the same letter are not significantly different.

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Table 2

Comfort Level by Unit

Domain Mean ± SD (Duncan Grouping) N Unit

PFCC 4.18 ± 0.50 (A) 16 Oncology

3.96 ± 0.46 (A,B) 22 ICU/CCU

3.76 ± 0.70 (B) 22 Telemetry

CEV 3.67 ± 0.67 (A) 16 Oncology

3.69 ± 0.59 (A) 22 ICU/CCU

3.32 ± 0.83 (A) 22 Telemetry

ECD 3.53 ± 0.54 (A) 16 Oncology

3.18 ± 0.64 (A) 22 ICU/CCU

3.18 ± 0.77 (A) 22 Telemetry

PFCC=Patient and Family-Centered Communication

CEV=Cultural and Ethical Values

ECD=Effective Care Delivery

Within each domain, means with the same letter are not significantly different.

Int J Palliat Nurs. Author manuscript; available in PMC 2016 March 01.

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