Original Article
The Care of the Actively Dying in an Academic Medical Center: A Survey of Registered Nurses’ Professional Capability and Comfort
American Journal of Hospice & Palliative Medicine® 2014, Vol. 31(6) 619-627 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113505194 ajhpm.sagepub.com
Ruth Powazki, MSW, LISW1,2, Declan Walsh, MSc, FACP, FRCP1,2,3, Brenda Cothren, RN1,2, Lisa Rybicki, MS4, Shirley Thomas, MRCP, DipPalMed1,2, Gloria Morgan, CNP1,2, Diana Karius MS, RN2, Mellar P. Davis, MD, FCCP1,2, and Shiva Shrotriya, MD1,2 Abstract Background: Care of the dying is a significant component of nursing practice particularly in hospitals. Nurses who work in certain areas like oncology, intensive care unit (ICU) face the care of the dying, more so than other units. Objectives: The survey was conducted to assess nurses’ self-perception of their professional capability and comfort in the care of the actively dying. Determine if professional capability and comfort was associated with any of the six demographics characteristics (age, gender, clinical experience, education level, nursing unit, continuing education). Identify areas of clinical challenge to promote educational initiatives to stimulate best nursing practice in the actively dying. Design: The survey comprised of two parts: Part I with demographic characteristics and a single open-ended question, Part II with twenty questions on the domains recommended by the NCP. Results: Older age and greater clinical experience were associated with greater levels of capability/comfort. Most nurses felt professionally capable and comfortable in domains such as knowledge, physical and psychosocial care but bioethics, communication, cultural, spiritual and bereavement issues challenged 40%. Conclusions: Nurses self-perceived professional capability and comfort levels in caring for the dying were positively influenced by older age, greater clinical experience and extensive continuing education. Bioethics, communication and grief impacted nurses personally and emotionally. Continuing education, organized debriefing, grief-counseling, and preceptors support should be routine for nurses who work in units with predictable high mortality. Keywords death, end of life, education, hospital, nursing, palliative
Introduction Appropriate care of the dying is a major concern for health professionals nationally and internationally.1 Nurses can positively influence the health and well-being of those facing death.1 In hospitals, nurses who work in certain areas like oncology, respiratory, or intensive care unit (ICU) face the care of the dying more so than other units.2 It is easy to assume they should feel proficient in this important skill. Some evidence is available about nurses’ opinions,3-4 but there are no randomized studies of nursing outcomes in care of the dying. Most relevant publications are surveys, questionnaires, and reports from ICU,5-6 neonatal subspecialties,7 oncology,3,8-10 and palliative medicine.11-12 Challenges identified included adverse behavioral responses (like anxiety, avoidance), difficult symptom management,5,9,12 a sense of inexperience,13 and communication challenges.4,6,13 These may compromise care through distanced behavior or patient isolation. The National Consensus Project (NCP)14 has recommended research on clinical
capabilities and outcomes to advance evidence-based nursing practice and improve quality. The Cleveland Clinic is a tertiary-level academic medical center with more than 1300 beds and over 52 500 admissions a year. Mortality rates are higher in some units because of the 1
The Harry R. Horvitz Center for Palliative Medicine, OH, USA*y Section of Palliative Medicine and Supportive Oncology, Department of Solid Tumor Oncology, Cleveland Clinic Taussig Cancer Center, OH, USA 3 The Harry R. Horvitz Chair in Palliative Medicine and Supportive Oncology, Cleveland Clinic Tausigg Cancer Institute, OH, USA 4 Department of Quantitative Health Sciences, Lerner Research Institute, Cleveland Clinic, OH, USA *A World Health Organization Demonstration Project in Palliative Medicine yAn ESMO Designated Center of Integrated Oncology and Palliative Care 2
Corresponding Author: Declan Walsh, MSc, FACP, FRCP, Cleveland Clinic (M77), 9500 Euclid Avenue Cleveland, Ohio 44195, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at University of Manitoba Libraries on June 18, 2015
American Journal of Hospice & Palliative Medicine® 31(6)
620 patient population, for example, ICU. Given the NCP recommendations, we surveyed nurses in some of these units about their professional capability and comfort levels in care of the dying.
included age, gender, education, years of clinical experience, nursing unit, and extent of continuing education. The single question was, ‘‘What do you struggle with the most in care of the dying?’’ (Appendix A) Part II: This comprised 20 questions on the domains recommended by the NCP for quality palliative care.14 Of the 20 questions, 9 dealt with perceived personal capability and 11 with comfort. The questions addressed the following 9 domains of care identified by the NCP14-15(Appendix A):
Objectives 1. Assess nurses’ self-perceived capability and comfort in care of the actively dying. 2. Determine whether professional capability and comfort was associated with any of the 6 demographic characteristics: age, clinical experience, education level, gender, nursing unit, and continuing education. 3. Identify areas of clinical challenge to promote educational initiatives to stimulate best nursing practices.
Methods This was a cross-sectional, mixed-method prospective study. For this survey, ‘‘capability’’ was defined as a sense of professional ability with end-of-life care and symptom management from training and experience; ‘‘comfort’’ was defined as being at ease with end-of-life care and symptom management. This definition of capability and comfort is explained in the survey questionnaire (Appendix B). Hospital inpatient units with known high-mortality rates (cardiology ICU, oncology, palliative medicine, bone marrow transplant, medical ICU, and surgical ICU) were recruited for the survey. All primary (direct) care nurses were eligible, and participation was voluntary. Participants were a convenience sample of over 200 nurses. In medical research, survey response rate are typically less than 30%; therefore, sample size was based on a target of a minimum of 100 respondents and an assumed 50% participation rate. The study was approved by the Cleveland Clinic’s Institutional Review Board (IRB).
Questionnaire Development The survey was developed through a consensus process within the Harry R Horvitz Center for Palliative Medicine multidisciplinary research team (physicians, nurses, and a social workers). Draft questions were initially pretested with 17 outpatient nurses in the Cancer Center for clarity and comprehension. Five initial items were deleted; others were reworded or clarified as a result. Twenty home care nurses of the Cleveland Clinic Hospice (given their expertise in care of the dying) were next asked to evaluate each question. Based on those responses, 8 were deleted and 1 new question added. Finally, the survey questionnaire was again reviewed by the entire research team to refine and clarify the question prior to use.
Design The questionnaire had 2 parts: Part I: This contained demographic characteristics along with a single open-ended question. Demographic data
1. 2. 3. 4. 5. 6. 7. 8. 9.
knowledge of care needs (5 questions); physical care (4 questions); psychosocial care (3 questions); communication (2 questions); ethics (1 question); religion (2 questions); culture (1 question); spiritual (1 question); and bereavement (1 question).
The investigators distributed the survey at the nursing unit staff meetings. Participants completed the questionnaire without any personal identifiers. They were then returned to the investigators via interdepartmental mail in a preaddressed envelope.
Statistical Analysis Nurse characteristics were summarized for the participants. Continuous variables were summarized as the mean, standard deviation, median, and range; categorical variables were summarized as frequency counts and percentages. For the analysis, the Likert-type scale coding was reversed so that 1 ¼ strongly disagree, 2 ¼ disagree, 3 ¼ neutral, 4 ¼ agree, and 5 ¼ strongly agree. Higher scores indicated greater capability or comfort, which made correlations easier to interpret. The following 6 nurse characteristics were analyzed to determine their association with the 20 survey questions: age, years of experience, education, gender, nursing unit, and continuing education. Age and experience were analyzed using Spearman correlation. The remaining variables were analyzed with Cochran-Mantel-Haenszel (CMH) tests; education with the CMH correlation test; and gender, nursing unit, and continuing education with the CMH mean score test. Thematic analysis was performed to summarize the open-ended survey question, ‘‘What do you struggle with the most in care of the dying patient?’’ As an exploratory summary, scores on each of the 20 questions were dichotomized as strongly agree or agree versus neutral, disagree, or strongly disagree. Responses of agree or strongly agree were grouped as positive response, while responses of neutral, disagree, or strongly disagree were grouped as negative response. The positive responses indicated a sense of capability or comfort, while the other does not. These were summarized in percentages.
Downloaded from ajh.sagepub.com at University of Manitoba Libraries on June 18, 2015
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Table 1. Demographic Data (N ¼ 123). Percentage Age, years (n ¼ 120), median (Range) 34 (21-63) Gender (n ¼ 122) Female 114 Male 8 Education (n ¼ 123) Bachelor 71 Associate 38 Diploma 7 Master 5 Doctorate 2 Certification (n ¼ 77) Yesa 21 No 56 Nursing experience, years (n ¼ 120) Median (range) 6.8 (0-41) Continuing Education in end of life care or symptom management (n ¼ 122) Yes 36 No 86 What do you struggle with the most in care of the dying patient?
Table 2. Demographic Data and Survey Questions: Univariable Analysis.a Question
93 7 58 31 6 4 2 27 73
30 71
a Certificate in hospice and palliative care, chemotherapy, cardiac life support, and critical care.
Data were analyzed using SAS software (SAS Institute, Inc, Cary, North Carolina). All statistical tests were 2 sided; P < .05 was used to indicate statistical significance.
Results Respondents The survey was given to registered nurses from 6 units. A total of 209 nurses were asked to complete the survey. Complete responses were available from 123 nurses, a 59% response rate. Six inpatient units participated: surgical intensive care unit (n ¼ 24), oncology (n ¼ 24), medical intensive care unit (n ¼ 20), cardiovascular intensive care unit (n ¼ 20), palliative medicine (n ¼ 18), and bone marrow transplant (n ¼ 17).
Demographics The median age was 34 years (range 21-63) and females (93%) predominated. In all, 58% had a bachelor’s degree; 27% had certification in courses such as hospice and palliative care, chemotherapy, cardiac life support, critical care, and 30% had some continuing education in end-of-life care. Median years of nursing experience were 7 (range 0-41; Table 1).
Analysis of Nurses’ Demographics With Survey Questions Older age and greater clinical experience were associated with greater levels of capability/comfort for most questions except those related to ethics, culture, religion, and bereavement. Nurses who had continuing education with relevant specialist courses scored better in capability or in comfort than those who
1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20.
Knowledge Knowledge Physical care Physical care Knowledge Physical care Physical care Psychosocial Psychosocial Psychosocial Knowledge Knowledge Communication Communication Ethics Religion Religion Cultural Spiritual Bereavement
Age
Clinica experience
Continuing education
The Care of the Actively Dying in an Academic Medical Center: A Survey of Registered Nurses’ Professional Capability and Comfort
American Journal of Hospice & Palliative Medicine® 2014, Vol. 31(6) 619-627 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113505194 ajhpm.sagepub.com
Ruth Powazki, MSW, LISW1,2, Declan Walsh, MSc, FACP, FRCP1,2,3, Brenda Cothren, RN1,2, Lisa Rybicki, MS4, Shirley Thomas, MRCP, DipPalMed1,2, Gloria Morgan, CNP1,2, Diana Karius MS, RN2, Mellar P. Davis, MD, FCCP1,2, and Shiva Shrotriya, MD1,2 Abstract Background: Care of the dying is a significant component of nursing practice particularly in hospitals. Nurses who work in certain areas like oncology, intensive care unit (ICU) face the care of the dying, more so than other units. Objectives: The survey was conducted to assess nurses’ self-perception of their professional capability and comfort in the care of the actively dying. Determine if professional capability and comfort was associated with any of the six demographics characteristics (age, gender, clinical experience, education level, nursing unit, continuing education). Identify areas of clinical challenge to promote educational initiatives to stimulate best nursing practice in the actively dying. Design: The survey comprised of two parts: Part I with demographic characteristics and a single open-ended question, Part II with twenty questions on the domains recommended by the NCP. Results: Older age and greater clinical experience were associated with greater levels of capability/comfort. Most nurses felt professionally capable and comfortable in domains such as knowledge, physical and psychosocial care but bioethics, communication, cultural, spiritual and bereavement issues challenged 40%. Conclusions: Nurses self-perceived professional capability and comfort levels in caring for the dying were positively influenced by older age, greater clinical experience and extensive continuing education. Bioethics, communication and grief impacted nurses personally and emotionally. Continuing education, organized debriefing, grief-counseling, and preceptors support should be routine for nurses who work in units with predictable high mortality. Keywords death, end of life, education, hospital, nursing, palliative
Introduction Appropriate care of the dying is a major concern for health professionals nationally and internationally.1 Nurses can positively influence the health and well-being of those facing death.1 In hospitals, nurses who work in certain areas like oncology, respiratory, or intensive care unit (ICU) face the care of the dying more so than other units.2 It is easy to assume they should feel proficient in this important skill. Some evidence is available about nurses’ opinions,3-4 but there are no randomized studies of nursing outcomes in care of the dying. Most relevant publications are surveys, questionnaires, and reports from ICU,5-6 neonatal subspecialties,7 oncology,3,8-10 and palliative medicine.11-12 Challenges identified included adverse behavioral responses (like anxiety, avoidance), difficult symptom management,5,9,12 a sense of inexperience,13 and communication challenges.4,6,13 These may compromise care through distanced behavior or patient isolation. The National Consensus Project (NCP)14 has recommended research on clinical
capabilities and outcomes to advance evidence-based nursing practice and improve quality. The Cleveland Clinic is a tertiary-level academic medical center with more than 1300 beds and over 52 500 admissions a year. Mortality rates are higher in some units because of the 1
The Harry R. Horvitz Center for Palliative Medicine, OH, USA*y Section of Palliative Medicine and Supportive Oncology, Department of Solid Tumor Oncology, Cleveland Clinic Taussig Cancer Center, OH, USA 3 The Harry R. Horvitz Chair in Palliative Medicine and Supportive Oncology, Cleveland Clinic Tausigg Cancer Institute, OH, USA 4 Department of Quantitative Health Sciences, Lerner Research Institute, Cleveland Clinic, OH, USA *A World Health Organization Demonstration Project in Palliative Medicine yAn ESMO Designated Center of Integrated Oncology and Palliative Care 2
Corresponding Author: Declan Walsh, MSc, FACP, FRCP, Cleveland Clinic (M77), 9500 Euclid Avenue Cleveland, Ohio 44195, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at University of Manitoba Libraries on June 18, 2015
American Journal of Hospice & Palliative Medicine® 31(6)
620 patient population, for example, ICU. Given the NCP recommendations, we surveyed nurses in some of these units about their professional capability and comfort levels in care of the dying.
included age, gender, education, years of clinical experience, nursing unit, and extent of continuing education. The single question was, ‘‘What do you struggle with the most in care of the dying?’’ (Appendix A) Part II: This comprised 20 questions on the domains recommended by the NCP for quality palliative care.14 Of the 20 questions, 9 dealt with perceived personal capability and 11 with comfort. The questions addressed the following 9 domains of care identified by the NCP14-15(Appendix A):
Objectives 1. Assess nurses’ self-perceived capability and comfort in care of the actively dying. 2. Determine whether professional capability and comfort was associated with any of the 6 demographic characteristics: age, clinical experience, education level, gender, nursing unit, and continuing education. 3. Identify areas of clinical challenge to promote educational initiatives to stimulate best nursing practices.
Methods This was a cross-sectional, mixed-method prospective study. For this survey, ‘‘capability’’ was defined as a sense of professional ability with end-of-life care and symptom management from training and experience; ‘‘comfort’’ was defined as being at ease with end-of-life care and symptom management. This definition of capability and comfort is explained in the survey questionnaire (Appendix B). Hospital inpatient units with known high-mortality rates (cardiology ICU, oncology, palliative medicine, bone marrow transplant, medical ICU, and surgical ICU) were recruited for the survey. All primary (direct) care nurses were eligible, and participation was voluntary. Participants were a convenience sample of over 200 nurses. In medical research, survey response rate are typically less than 30%; therefore, sample size was based on a target of a minimum of 100 respondents and an assumed 50% participation rate. The study was approved by the Cleveland Clinic’s Institutional Review Board (IRB).
Questionnaire Development The survey was developed through a consensus process within the Harry R Horvitz Center for Palliative Medicine multidisciplinary research team (physicians, nurses, and a social workers). Draft questions were initially pretested with 17 outpatient nurses in the Cancer Center for clarity and comprehension. Five initial items were deleted; others were reworded or clarified as a result. Twenty home care nurses of the Cleveland Clinic Hospice (given their expertise in care of the dying) were next asked to evaluate each question. Based on those responses, 8 were deleted and 1 new question added. Finally, the survey questionnaire was again reviewed by the entire research team to refine and clarify the question prior to use.
Design The questionnaire had 2 parts: Part I: This contained demographic characteristics along with a single open-ended question. Demographic data
1. 2. 3. 4. 5. 6. 7. 8. 9.
knowledge of care needs (5 questions); physical care (4 questions); psychosocial care (3 questions); communication (2 questions); ethics (1 question); religion (2 questions); culture (1 question); spiritual (1 question); and bereavement (1 question).
The investigators distributed the survey at the nursing unit staff meetings. Participants completed the questionnaire without any personal identifiers. They were then returned to the investigators via interdepartmental mail in a preaddressed envelope.
Statistical Analysis Nurse characteristics were summarized for the participants. Continuous variables were summarized as the mean, standard deviation, median, and range; categorical variables were summarized as frequency counts and percentages. For the analysis, the Likert-type scale coding was reversed so that 1 ¼ strongly disagree, 2 ¼ disagree, 3 ¼ neutral, 4 ¼ agree, and 5 ¼ strongly agree. Higher scores indicated greater capability or comfort, which made correlations easier to interpret. The following 6 nurse characteristics were analyzed to determine their association with the 20 survey questions: age, years of experience, education, gender, nursing unit, and continuing education. Age and experience were analyzed using Spearman correlation. The remaining variables were analyzed with Cochran-Mantel-Haenszel (CMH) tests; education with the CMH correlation test; and gender, nursing unit, and continuing education with the CMH mean score test. Thematic analysis was performed to summarize the open-ended survey question, ‘‘What do you struggle with the most in care of the dying patient?’’ As an exploratory summary, scores on each of the 20 questions were dichotomized as strongly agree or agree versus neutral, disagree, or strongly disagree. Responses of agree or strongly agree were grouped as positive response, while responses of neutral, disagree, or strongly disagree were grouped as negative response. The positive responses indicated a sense of capability or comfort, while the other does not. These were summarized in percentages.
Downloaded from ajh.sagepub.com at University of Manitoba Libraries on June 18, 2015
Powazki et al
621
Table 1. Demographic Data (N ¼ 123). Percentage Age, years (n ¼ 120), median (Range) 34 (21-63) Gender (n ¼ 122) Female 114 Male 8 Education (n ¼ 123) Bachelor 71 Associate 38 Diploma 7 Master 5 Doctorate 2 Certification (n ¼ 77) Yesa 21 No 56 Nursing experience, years (n ¼ 120) Median (range) 6.8 (0-41) Continuing Education in end of life care or symptom management (n ¼ 122) Yes 36 No 86 What do you struggle with the most in care of the dying patient?
Table 2. Demographic Data and Survey Questions: Univariable Analysis.a Question
93 7 58 31 6 4 2 27 73
30 71
a Certificate in hospice and palliative care, chemotherapy, cardiac life support, and critical care.
Data were analyzed using SAS software (SAS Institute, Inc, Cary, North Carolina). All statistical tests were 2 sided; P < .05 was used to indicate statistical significance.
Results Respondents The survey was given to registered nurses from 6 units. A total of 209 nurses were asked to complete the survey. Complete responses were available from 123 nurses, a 59% response rate. Six inpatient units participated: surgical intensive care unit (n ¼ 24), oncology (n ¼ 24), medical intensive care unit (n ¼ 20), cardiovascular intensive care unit (n ¼ 20), palliative medicine (n ¼ 18), and bone marrow transplant (n ¼ 17).
Demographics The median age was 34 years (range 21-63) and females (93%) predominated. In all, 58% had a bachelor’s degree; 27% had certification in courses such as hospice and palliative care, chemotherapy, cardiac life support, critical care, and 30% had some continuing education in end-of-life care. Median years of nursing experience were 7 (range 0-41; Table 1).
Analysis of Nurses’ Demographics With Survey Questions Older age and greater clinical experience were associated with greater levels of capability/comfort for most questions except those related to ethics, culture, religion, and bereavement. Nurses who had continuing education with relevant specialist courses scored better in capability or in comfort than those who
1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20.
Knowledge Knowledge Physical care Physical care Knowledge Physical care Physical care Psychosocial Psychosocial Psychosocial Knowledge Knowledge Communication Communication Ethics Religion Religion Cultural Spiritual Bereavement
Age
Clinica experience
Continuing education
