Self-Perceived Knowledge and Comfort Discussing Palliative Care and End-of-Life Issues among Professionals Managing Neuroinflammatory Diseases

Abstract

Background:

The growing trend in providing palliative care and end-of-life services has dictated that healthcare providers be adequately trained to care for people with serious illnesses, such as multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD). These progressive inflammatory diseases lead to physical, cognitive and emotional deficits and have exceptionally high care demands leading to high levels of distress. Because the impact on the delivery of patient care is influenced by the specialists' knowledge and comfort discussing end-of-life issues, it is concerning that interventions to address unmet palliative care needs in MS and NMOSD rarely include clinician-patient dyads.

Objectives:

To evaluate the neurology clinicians' knowledge and level of comfort discussing palliative care and end-of-life issues.

Design:

A cross sectional survey was conducted. The statistical analyses included frequencies, chi square statistics and logistic regression.

Setting/Subjects:

414 MS specialists answered an online anonymous survey. The survey was conducted using email distributions to MS professionals through the Consortium of MS Centers (CMSC), the International Organization of MS Nurses (IOMSN) and the UK Nurses' MS Organization.

Measurement:

The “End of Life Professional Caregiver Survey” (EPCS) was used to collect data.

Results:

The majority of the multidisciplinary professionals were female, white, nurses, and older than 40 years of age. 41% had their own advance directives and 57.6% had end-of-life basic training. There was a statistically significant association between end-of-life training or having advance directives and comfort discussing palliative care and end of life issues. Professionals that had basic end-of-life training and their own advance directives had higher comfort discussing code status, specific end-of-life issues, and advance directive planning.

Conclusions:

Basic end-of-life training and having advance directives among MS professionals were associated with better communication of palliative care and end-of-life domains with patients and their care partners.

Introduction

Neurological professionals in multiple sclerosis (MS) centers provide care for patients with neuroinflammatory demyelinating and neurodegenerative chronic illnesses, such as MS and neuromyelitis optica spectrum disorder (NMOSD). These diseases are the most common neuroinflammatory diseases of the central nervous system. MS prevalence is approximately one million in the United States and three million worldwide with a female:male ratio of 3:1.^1,2 NMOSD is considered a rare disease that is overrepresented in non-European populations worldwide. A national NMOSD clinical consortium was established and reported 187 patients with a female:male ratio of 6.5:1.^3,4 These are unpredictable autoimmune diseases characterized by early onset demyelination and axonal loss leading to irreversible neurological impairment and loss of function.^3–7 These illnesses may lead to cognitive, emotional, and physical symptoms with exceptionally high care demands, leading to high levels of psychological and physiological distress in patients and their care partners.^8–12

Although these neuroinflammatory illnesses are relapsing and progressive diseases, patients do not often assign a health care proxy or make any decisions related to their palliative care (PC) and end-of-life (EOL) wishes.¹³ A primary source of patients' and care partners' psychological distress is the high incidence of unmet PC needs.^14–16 Furthermore, clinicians are frequently uncomfortable and lack communication skills for PC and EOL discussions, especially with their young patients. Overall, the timing of introducing PC to patients with these neurological diseases is controversial.¹⁷ PC assessment is being performed in Europe soon after the diagnosis of MS and, if necessary, a referral to specialized PC service is made.¹⁸ If similar approaches are not developed in the United States, individual patients will continue to depend too much on professionals recognizing (or not) their unmet PC needs.¹⁸

A few studies have discussed the integration of palliative and EOL care in patients with neurological diseases.^16,19–21 However, most of the MS studies on PC and EOL discussions between clinicians and their patients involve patients who have severe forms of these neurological diseases and during later phases of the illness.^17,22–27 Neurology and PC experts believe that introducing PC early in the disease would improve care in patients with neurological diseases; however, they identified a number of barriers, such as limited resources and clinicians' awareness.²⁸ Evidence showing an association between early integration of PC and improved quality of life, better symptom management, and increased care partners' satisfaction has mainly been reported in patients with cancer.^28–30 The presence of additional confounding factors such as cognitive impairment and mood disorders in patients with MS may present unique challenges regarding PC and EOL issues, particularly in relation to a patient's ability to consent to treatment or to request that a treatment be stopped. While clinicians working at the intersection of neurology and oncology are well positioned to understand these challenges, neurologists and MS experts receive little formal PC training.^28,29

With the rapid growth in PC across the United States, there are opportunities to improve the PC knowledge of neurology trainees and the delivery of PC to patients with neurologic disease.^28–31 They highlight how PC conversations are frequently triggered by acute events resulting in the loss of a patient's capacity, thereby requiring surrogate communication and decision making. In addition, prognostic uncertainty and unfamiliarity with disease trajectories in neurology pose a challenge for palliative clinicians. Neurology experts point to the lack of PC training and education, resulting in minimal communication and referral to PC.^32–36 In view of the limited training of neurology professionals in PC and EOL issues, the purpose of this study was to evaluate neurological professionals' perceived level of comfort and competence discussing these issues. The four aims of the study were to (1) investigate the association between neurological professionals' basic EOL training and their knowledge and comfort discussing PC and EOL issues; (2) investigate the association between professionals having their own advance directives and their knowledge and comfort discussing PC and EOL issues; (3) evaluate the association between professionals' personal resources (personal knowledge and experience) and basic EOL training, work resources, education, and years of experience; and (4) evaluate the odds of having basic EOL training or having advance directives and comfort discussing early PC/EOL issues with patients with MS.

Methodology

A cross-sectional anonymous survey was conducted using email distributions to 8000 MS professionals through the Consortium of MS Centers (CMSC), the International Organization of MS Nurses (IOMSN), and the UK Nurses' MS Organization. The professionals in these organizations care for patients with MS, NMOSD, and other neuroinflammatory diseases. They were asked to complete a demographic form and the EOL Professional Caregiver Survey (EPCS),³⁷ distributed twice to these professionals within a 12-week period through an online survey. The survey was designed and administered through the survey hero software program/application.

Institutional Review Board (IRB) approval was received through the Mount Sinai Health System, the Icahn School of Medicine in New York City. A research consent form following a template of the Mount Sinai IRB was attached to the enhanced EPCS. The consent described the voluntary nature of the survey. Participation in the survey after reading the information sheet constituted evidence of consent.

The demographic form included age, sex, race/ethnicity, profession, country, education level, years of experience with MS, whether the participant had her/his advance directives (health care proxy, living will or physician's/medical order for life-sustaining treatment), resources/training at work, and basic EOL training (basic knowledge and awareness of EOL concepts through workplace training and workshops). The EPCS, used in multiple chronic illness studies, contains 28 questions and covers all eight domains of the PC guidelines and is consistent with the PC Competence theoretical framework³⁸: scientific and clinical knowledge/technical skills; communication/interpersonal skills with patients, family members, and other clinicians; spiritual and cultural issues; ethical, professional, and legal principles; organizational skills; and attitudes, values, and feelings of health care professionals.³⁸ The EPCS is psychometrically valid for use as a single (nondiscipline specific) scale to evaluate the educational needs of professionals.³⁷ In addition, correlations among the factors of the EPCS and the overall EPCS ranged from 0.80 to 0.92 (p = 0.01).³⁷ In the current study, the EPCS was enhanced by adding two questions (questions 29 and 30) created by the authors to address early discussion of EOL issues and specific potential future interventions with patients with MS and their care partners after their diagnosis. Each of the 30 questions had 5 answer options regarding professionals' knowledge/comfort: Not at all, A little bit, Somewhat, Quite a bit, and Very much.

Data analyses

The data were entered into SPSS IBM version 23. The statistical analyses included frequencies, chi square statistics, and logistic regression. The chi-square analyses were performed to investigate the association between each of two dichotomous variables whose data were obtained in the demographic form (having EOL basic training and having their own advance directives) and the specific PC/EOL-related questions/statements from the enhanced EPCS. For these analyses, the five answer options of the enhanced EPCS were collapsed into two levels of knowledge/comfort; not at all, a little bit, and somewhat versus quite a bit and very much. The analyses included determination of statistical significance of the chi-square statistics (p < 0.05) and effect size, as measured by Cramer's V.³⁹ Cramer's V is a statistic used to measure the strength of association between two nominal variables, and it takes values from 0 (weakest association) to 1 (strongest association). Weak association is a Cramer's V value of 0.1 or lower, moderate association is between 0.1 and 0.3 inclusive of 0.3, and strong association is a value higher than 0.3.³⁹ Two separate binomial logistic regression analyses were performed to predict the odds of having basic EOL training and having advance directives. Controlling for demographics, predictors in each of the logistic regressions were feeling comfortable discussing EOL issues and advance directives early in the MS disease course (question 29) and comfort discussing specific issues such as gastric and breathing tubes early in the MS disease course (question 30).

Results

The survey was completed by 414 of the 8000 (5%) MS professionals to whom it was distributed online. Characteristics of survey respondents are given in Table 1. The majority of the professionals were female, white, nurses, and older than 40 years (Table 1). Approximately 50% of the professionals had 21–40 years of experience and 66.5% were from the U.S. Professionals from the United States versus all other countries did not show a statistically significant difference related to basic EOL training [X²(1) = 0.164, p = 0.685], but having advance directives was significantly higher among professionals in the United States versus other countries [X²(1) = 17.899, p < 0.001] (Tables 2 and 3). Forty-one percent of the professionals had their own advance directives and 57.6% had EOL basic training in their medical or nursing education (Table 1). Missing data were excluded from the analysis because there were very few missing items (∼2%).

Table 1.

Characteristics of the Sample (n = 414)

Characteristic	No.	Percent
Age
<25	1	0.2
25–40	82	19.8
41–60	226	54.6
>60	105	25.4
Sex
Female	348	85
Male	60	15
Race/ethnicity
White	365	90.6
Black	13	3.2
Hispanic	5	1.2
Other	20	5
Level of education
Bachelor's degree	165	40.9
Master's degree	134	33.3
Doctoral degree (MD and other doctoral degrees)	92	22.8
Other	12	3
Profession
Nurses	190	47.1
Nurse practitioners	62	15.4
Physicians	53	13.2
Other (rehabilitation therapists, social workers, and pharmacists)	98	24.3
Years of experience with MS
≤5 Years	20	4.8
6–10 Years	65	15.7
11–15 Years	32	7.7
16–20 Years	55	13.3
21–40 Years	193	46.6
>40 Years	49	11.9
Workplace
United States	268	66.5
Australia	52	12.9
Canada	29	7.2
United Kingdom	18	4.5
Other	36	8.9
Basic EOL training
Yes	235	57.6
No	173	42.4
Has own advance directives
Yes	167	41
No	240	59
Personal resources
Yes	122	30.3
No	281	69.7
Resources/training at work
Yes	235	56.8
No	179	43.2

EOL, end of life.

Table 2.

Association between Demographic Variables and Professionals Having Their Own Advance Directives

Demographics	Has own advance directives (N = 167), (%)	Does not have own advance directives (N = 240), (%)	Cramer's V
Age^***			0.160
25–40 Years old	13.3	24.2
41–60 Years old	50.3	58.5
>60 Years old	36.4	17.4
Sex			0.070
Female	87.1	83.3
Male	12.9	16.7
Ethnicity/race			0.082
White	93.3	88.5
Black	1.8	4.3
Hispanic	1.8	0.9
Other	3.1	6.4
Level of education^*			0.132
Bachelor's degree	34.4	45.5
Master's degree	39.9	28.9
Doctoral degree (MD and other doctoral degrees)	24.5	21.7
Other	1.2	3.8
Years of experience^**			0.189
5 Years or less	9.8	19.6
6–10 Years	3.1	6.4
11–15 Years	9.8	6
16–20 Years	13.5	13.2
21–40 Years	43.6	48.5
>40 Years	20.2	6.4
Type of profession			0.040
Nurse or nurse practitioner	60.7	63.4
Physician	13.5	13.2
Other	25.8	23.4
Country of practice^***			0.186
United States	78.4	58.3
Other (collapsed)	21.6	41.7

p < 0.05; ^**p < 0.01; ^***p < 0.001.

Table 3.

Association between Demographic Variables and Professionals Having Basic End-of-Life Training

Demographics	Has basic end-of-life training (N = 167), (%)	Does not have basic end-of-life training (N = 240), (%)	Cramer's V
Age			0.022
25–40 Years old	19.6	20.8
41–60 Years old	54.5	54.9
>60 Years old	26.0	24.3
Sex			0.043
Female	84.9	84.9
Male	14.7	15.1
Ethnicity/race			0.120
White	91.9	87.9
Black	3.8	2.9
Hispanic	0.4	2.9
Other	3.8	6.4
Level of education			0.083
Bachelor's degree	35.3	29.5
Master's degree	33.2	32.9
Doctoral degree (MD and other doctoral degrees)	18.7	24.9
Other	12.8	12.7
Years of experience			0.096
5 Years or less	4.3	5.8
6–10 Years	17.4	13.3
11–15 Years	6.4	9.8
16–20 Years	12.8	13.3
21–40 Years	46.0	47.4
>40 Years	13.2	10.4
Type of profession^**			0.176
Nurse or nurse practitioner	68.9	52.0
Physician	11.5	15.0
Other	19.6	32.9
Country of practice			0.020
United States	67.2	65.3
Other (collapsed)	32.8	34.7

p < 0.05; ^**p < 0.01; ^***p < 0.001.

There were statistically significant associations between professionals having their own advance directives and both grouped age and years of experience [X²(1) = 21.387, p < 0.001; X²(1) = 28.818, p = 0.001, respectively] (Table 2). Older professionals and those with more years of experience were more likely to have their own advance directives than those who were younger and those with fewer years of experience. In addition, there was a statistically significant association between professionals having their own advance directives and country of practice [X²(1) = 27.846, p = 0.001] (Table 2). Professionals who practiced in the United States were more likely to have their own advance directives than those from other countries. Moreover, there was a statistically significant association between EOL training and having their own advance directives (Fig. 1). Of the professionals who had EOL training, 64.8% had their own advance directives, while among professionals who did not have EOL training, only 35.2% had their own advance directives [X²(1) = 5.623, p = 0.018] (Fig. 1).

FIG. 1.

Association between basic end-of-life training and having own advance directives.

There was a highly statistically significant and strong association between having basic EOL training and the comfort of discussing code status (question 4) [X²(1) = 42.666, p < 0.001], and encouraging patients and families to complete advance care planning (question 12) [X²(1) = 36.493, p < 0.001] (Table 4). There was also a highly statistically significant and moderate association between having had basic EOL training and the comfort of discussing advance directives with patients with MS early in the disease process (Fig. 2) (question 29) [X²(1) = 49.146, p < 0.001], and discussing specific wishes of patients with MS, such as placing a gastric or a breathing tube (Fig. 3) (question 30) [X²(1) = 28.096, p < 0.001] (Table 3). In fact, those who had basic EOL training had a statistically significant higher comfort discussing all PC and EOL issues described in Table 3.

FIG. 2.

Comfort discussing advance directives with patients in early phases of MS. MS, multiple sclerosis. 1 = little comfort; 2 = very much.

FIG. 3.

Comfort discussing specific wishes such as gastric and breathing tubes early in the course of the illness. 1 = little comfort; 2 = very much.

Table 4.

Association between Responding Quite a Bit/Very Much to End-of-Life Professional Caregiver Survey Questions and Having End-of-Life Basic Training

EPCS questions	Had basic EOL Training (N = 235), (%)	Did not have basic EOL training (N = 173), (%)	Cramer's V
1. Comfortable helping families to accept a poor prognosis^***	70.9	46.2	0.247
2. Able to set goals for care with patients and families^***	76.9	59.2	0.188
3. Comfortable talking to patients/families about personal choice and self-determination^***	82.9	64.5	0.207
4. Comfortable discussing code status^***	71.4	38.5	0.324
5. Can assist family members and others through the grieving process^***	70.1	43.8	0.261
6. Able to document the needs and interventions of my patients^**	82.1	68.6	0.143
7. Comfortable talking with health care professionals about the care of dying patients^***	89.7	73.4	0.211
8. Comfortable helping to resolve difficult family conflicts about EOL care^***	50	23.7	0.270
9. Can recognize impending death (physiologic changes)^***	77.4	46.2	0.322
10. Know how to use nondrug therapies in management of patients' symptoms^***	54.3	34.9	0.188
11. Able to address patients'/family members' fears of addicted to pain meds^***	62	41.4	0.195
12. Encourage patients and families to complete advanced care planning^***	73.5	43.8	0.300
13. Comfortable dealing with ethical issues related to EOL/palliation^***	64.6	39.1	0.246
14. Able to deal with my feelings related to working with dying patients^**	76.5	60.9	0.165
15. Able to be present with dying patients^***	78.2	58.6	0.212
16. Can address spiritual issues with patients and their families^**	56.8	39.6	0.173
17. Comfortable dealing with patients'/families' religious/cultural perspectives^**	66.2	50.3	0.160
18. Comfortable providing grief counseling to families^***	42.3	20.1	0.238
19. Comfortable providing grief counseling for staff^***	43.2	17.2	0.279
20. Knowledgeable about cultural factors influencing EOL care^***	38.5	11.8	0.290
21. Recognize when patients are appropriate for referral to hospice^***	68.4	39.6	0.287
22. Familiar with palliative care principles and national guidelines^***	56.4	20.7	0.359
23. Effective at helping patients and families navigate the health care system^***	70.5	40.8	0.297
24. Familiar with the services hospice provides^***	67.5	43.2	0.246
25. Effective at helping to maintain continuity across care settings^***	65	43.8	0.213
26. Confident addressing requests for assisted suicide^***	21.4	7.1	0.196
27. Personal resources to meet the needs of dying patients/families^***	37.2	20.7	0.179
28. Feel that my workplace provides resources to support staff who care for dying patients^*	25.6	16.6	0.113
29. Comfortable discussing advance directives with patients with MS early in the disease course^***	50.9	27.8	0.275
30. Comfortable discussing specific issues (placement of gastric tube or trach) early in the disease course of MS^***	49.6	26.6	0.274

p < 0.05; ^**p < 0.01; ^***p < 0.001.

There was a significant and moderate association between MS specialists having their own advance directives and being comfortable helping families to accept a poor prognosis (question 1) [X²(1) = 6.163, p = 0.021], setting goals (question 2) [X²(1) = 6.998, p = 0.032], and code status discussions (question 4) [X²(1) = 9.843, p = 0.003] (Table 5). Approximately 50% of professionals who had their own advance directives felt comfortable discussing and participating in PC and EOL discussions (Table 5). More than 50% of professionals who had their own advance directives felt comfortable and knowledgeable about being comfortable completing advance directives with patients and their care partners (question 12) [X²(1) = 33.052, p < 0.001], having early PC discussions with patients with MS and their care partners (question 29) [X²(1) = 31.330, p < 0.001], and specific discussions about gastric and breathing tubes (question 30) [X²(1) = 17.102, p < 0.001]. The association of these variables and others with professionals having their own advance directives was highly statistically significant and moderate (Table 5).

Table 5.

Association between Responding Quite a Bit/Very Much to End-of-Life Professional Caregiver Survey Questions and Having Their Own Advance Directives

EPCS questions	Had their own advance directives (N = 167) (%)	Did not have their own advance directives (N = 240) (%)	Cramer's V
1. Comfortable helping families to accept a poor prognosis^*	68.1	55.7	0.124
2. Able to set goals for care with patients and families^*	76.7	64.7	0.132
3. Comfortable talking to patients/families about personal choice and self-determination^**	84	68.9	0.172
4. Comfortable participating and discussing code status^**	66.9	51.1	0.157
5. Can assist family members and others through the grieving process	62.6	56.6	0.098
6. Able to document the needs and interventions of my patients	81.6	73.2	0.103
7. Comfortable talking with health care professionals about the care of dying patients	86.5	80	0.110
8. Comfortable helping to resolve difficult family conflicts about EOL care	42.9	36.2	0.093
9. Can recognize impending death (physiologic changes)	65.6	62.2	0.114
10. Know how to use nondrug therapies in management of patients' symptoms	50.9	42.6	0.123
11. Able to address patients'/family members' fears of addiction to pain meds^**	60.7	47.7	0.160
12. Encourage patients and families to complete advanced care planning^***	77.3	49.8	0.288
13. Comfortable dealing with ethical issues related to EOL/hospice/palliative care^**	63.8	46.8	0.168
14. Able to deal with my feelings related to working with dying patients^**	78.5	64.3	0.153
15. Able to be present with dying patients^*	76.7	65.1	0.142
16. Can address spiritual issues with patients and their families	55.8	45.1	0.119
17. Comfortable dealing with patients' and families' religious and cultural perspectives	64.4	55.7	0.109
18. Comfortable providing grief counseling to families^**	41.7	26.4	0.186
19. Comfortable providing grief counseling for staff^**	40.5	26	0.179
20. Knowledgeable about cultural factors influencing EOL care^**	35	20.9	0.170
21. Recognize when patients are appropriate for referral to hospice^***	72.4	44.7	0.295
22. Familiar with palliative care principles and national guidelines^***	54	32.3	0.216
23. Effective at helping patients and families navigate the health care system^***	69.3	49.4	0.199
24. Familiar with the services hospice provides^***	68.1	48.9	0.203
25. Effective at helping to maintain continuity across care settings^**	63.8	49.8	0.155
26. Confident addressing requests for assisted suicide	19.6	12.8	0.112
27. Personal resources to meet the needs of dying patients/families^**	40.5	23	0.188
28. Feel that my workplace provides resources to staff who care for dying patients	25.8	19.1	0.082
29. Comfortable discussing advance directives with patients with MS early in the disease course^***	54.6	31.5	0.281
30. Comfortable discussing specific issues (placement of gastric tube or trach) early in the disease course of MS^***	48.5	33.2	0.207

p < 0.05; ^**p < 0.01; ^***p < 0.001.

There was also a highly significant and moderate association between having basic EOL training and personal resources to meet individual needs [X²(1) = 12.769, p < 0.001], and a strong association between having personal resources and having work resources [X²(1) = 61.025, p < 0.001] (Table 6). Sixty-three percent of professionals who felt that they had personal resources, identified their workplace as a resource for PC issues (Table 6). However, there was no significant association between having personal resources and level of education when discussing EOL issues [X²(1) = 1.655, p = 0.647]. In addition, there was a highly statistically significant and strong association between having personal resources and years of experience as a neurological professional [X²(5) = 16.575, p < 0.001] (Table 6).

Table 6.

Association between Professionals' Personal Resources and Basic End-of-Life Training, Work Resources, Education, and Years of Experience

Characteristics	Has personal resources (N = 122) (%)	Does not have personal resources (N = 281) (%)	Cramer's V
EOL basic training^***	71.3	52.2	0.179
Workplace resources to staff who care for dying patients^***	45.9	11.2	0.340
Level of education			0.064
Bachelor's degree	44.3	39.9
Master's degree	31.1	33.8
Doctorate	23	22.7
Other	1.6	3.6
Years of experience^**			0.204
5 Years or less	1.6	6.5
6–10 Years	12.3	16.9
11–15 Years	6.6	8.3
16–20 Years	9.8	14
21–40 Years	49.2	45.7
>40 Years	20.5	8.6

p < 0.01; ^***p < 0.001.

Logistic regression results indicated that, controlling for demographic, the odds of professionals having basic EOL training were significantly lower for those professionals who did not feel comfortable discussing EOL issues early in the MS disease course (p = 0.009) (question 29) (Table 7). There was no statistical significance for the odds of having basic EOL training and comfort discussing specific issues such as gastric and breathing tubes early in the MS disease course (question 30) (Table 7) and no statistical significance for the odds of having advance directives and discussing EOL issues early in the MS disease course (Table 8).

Table 7.

Logistic Regression to Predict the Odds of Professionals Having Basic End-of-Life Training

Variable	B	SE	Wald	df	Sig.	OR
Age groups
25–40 Years old	0.316	0.520	0.369	1	0.543	1.372
41–60 Years old	−0.021	0.387	0.003	1	0.957	0.979
>60 Years old (ref)
Sex
Female	−0.191	0.487	0.154	1	0.695	0.826
Male (ref)
Education
Bachelor's degree	0.337	0.483	0.486	1	0.486	1.401
Master's degree	0.539	0.531	1.029	1	0.310	1.713
Doctoral degree	0.196	0.657	0.089	1	0.766	1.217
Other (ref)
Profession
Nurse	1.036	0.415	6.220	1	0.013	2.817
Nurse practitioner	0.376	0.521	0.521	1	0.471	1.456
Physician	0.162	0.647	0.063	1	0.802	1.176
Other (ref)
Experience in years
10 Years or less	1.058	0.565	3.509	1	0.061	2.882
11–20 Years	0.432	0.528	0.667	1	0.414	1.540
21–40 Years	0.479	0.479	1.001	1	0.317	1.615
>40 Years (ref)
Race
White	1.095	0.648	2.859	1	0.091	2.989
Black	0.807	1.083	0.555	1	0.456	2.240
Other (ref)
Country of work
USA	0.067	0.332	0.041	1	0.840	1.069
Other (ref)
Q29 Comfort MS early discussion about palliative and EOL
Q29 Not comfortable	−1.534	0.591	6.740	1	0.009	0.216
Q29 Comfortable (ref)
Q30 Comfort MS early discussion of specific EOL wishes
Q30 Not comfortable	−0.382	0.576	0.440	1	0.507	0.682
Q30 Comfortable (ref)
Constant	−0.856	0.992	0.744	1	0.388	0.425

Bold indicates statistically significant results (p < .01 or p < .05).

Table 8.

Logistic Regression to Predict the Odds of Professionals Having Their Own Advance Directives

Variable	B	SE	Wald	df	Significance	OR
Age groups
25–40 Years old	−1.034	0.569	3.303	1	0.069	0.355
41–60 Years old	−1.001	0.419	5.703	1	0.017	0.367
>60 Years old (ref)
Sex
Female	1.692	0.648	6.809	1	0.009	5.431
Male (ref)
Race
White	1.062	0.785	1.833	1	0.176	2.893
Black	−0.936	1.391	0.452	1	0.501	0.392
Other (ref)
Education
Bachelor's degree	1.678	0.682	6.046	1	0.014	5.355
Master's degree	1.599	0.708	5.096	1	0.024	4.948
Doctoral degree	1.068	0.810	1.739	1	0.187	2.909
Other (ref)
Profession
Nurse	−0.817	0.459	3.165	1	0.075	0.442
Nurse practitioner	−0.635	0.566	1.258	1	0.262	0.530
Physician	0.761	0.728	1.094	1	0.296	2.141
Other (ref)
Years of experience
10 Years or less	−0.590	0.657	0.806	1	0.369	0.554
11–20 Years	0.956	0.585	2.667	1	0.102	2.601
21–40 Years	0.406	0.533	0.581	1	0.446	1.501
>40 Years (ref)
Country of work
United States	1.286	0.411	9.809	1	0.002	3.620
Other (ref)
Q29 comfortable discussing EOL issues early with MS patients
Q29 MS not comfortable	−0.567	0.632	0.807	1	0.369	0.567
Q29 MS comfortable (ref)
Q30
Q30 MS not comfortable	−0.727	0.623	1.363	1	0.243	0.483
Q30 MS comfortable (ref)
Constant	−3.653	1.292	7.995	1	0.005	0.026

Bold indicates statistically significant results (p < .01 or p < .05).

Discussion

Among 414 MS professionals from various disciplines, 57% of the respondents had received basic EOL training, and 41% had completed their own advance directives. Professionals who practiced in the United States were more likely to have their own advance directives than those from other countries. This study found that both EOL training and having advance directives were associated with increased knowledge and comfort with some aspects of EOL discussions with MS patients. Furthermore, comfort helping to resolve difficult family conflict and knowledge of nondrug therapies seem to benefit less from clinicians having their own advance directives, whereas the benefit of talking with patients and families about personal choice was higher. In addition, comfort addressing spiritual and religious aspects of care seem to benefit less from basic EOL training undertaken by respondents than encouraging patients and families to complete advance directives, which appears to yield higher benefit.

To our knowledge, advance directives and EOL issues have not been examined in research involving MS and NMOSD professionals. In the current study, 57.6% had basic EOL training, whereas 64.9% in the Scherer study and 62% in the Lazenby study had formal instruction in advance directives at their place of work.^37,40 Additionally, the study by Lazenby et al. showed that having advance directives among 369 multidisciplinary professionals was significantly associated with higher scores on the EPCS instrument. In a recent systematic review,⁴¹ there was concern over the type and quality of basic EOL training. Recently, there has been a proliferation of EOL care and communication skills training interventions. These include role play, group work, reflection and discussion, and the more traditional lectures and presentations.⁴¹ This model would seem appropriate for MS and NMOSD centers, although the content would need to be adapted for the particular challenges and nuances of the neurology setting.

Our study found a statistically significant decreased odds of having basic EOL training among those who were less comfortable to discuss EOL and PC issues with patients with MS during the early phases of their illness. In addition, this study found a statistically significant association between basic EOL training or having advance directives and the comfort of discussing specific wishes with patients during earlier phases of the illness, and the comfort of discussing advance directives and code status. Early PC discussions were associated with improved quality of life in patients with metastatic nonsmall-cell lung cancer.⁴² Unfortunately, the potential benefits of early PC discussions have not been evaluated in MS, and both MS patients and clinicians have expressed reservations regarding early PC discussions.⁴³ The fact that some of the respondents to our survey were comfortable initiating these early discussions further underscores the need for further research on PC/EOL in MS.

This study underscores the importance of MS professionals participating in EOL training and having advance directives, since both were associated with improved perceived comfort discussing EOL issues. However, having an advance directive is a highly personal choice driven by a number of factors, including personal experience, cultural perspectives, and values. In addition, there may be other beliefs and personality tendencies that make professionals both more likely to sign their own advance directives and more likely to better handle these crucial PC conversations and management activities. The study findings support the need for widespread education and training on EOL care for MS professionals and encouraging providers to have their own advance directives. Thus, it is a desirable goal to test the impact of low-cost, easily scalable standardized workplace educational and training workshops to MS providers and patients with MS.

Strengths and limitations of the study

The sample of neuroinflammatory experts was drawn from national and international MS organizations and physicians, and nurses/nurse practitioners were represented. The majority of the sample was older than 40 years and with many years of MS experience (21–40 years). Based on internal unpublished reports from CMSC and IOMSN, the demographic distribution of the survey responders appears reasonably consistent with the population of MS experts. Additionally, despite the small sample size, the strong correlation between having basic EOL training and comfort discussing PC/EOL care with patients is foreseeable and has strong face validity, reinforcing the value of such training for all neurologists. In addition, the use of the EPCS instrument, a valid and a reliable tool, is a strength of the study.

The design of this study (convenience sample) limits the generalizability of the results, and this limitation is amplified by the low response rate. Furthermore, there is a response selection bias in that the responders were skewed toward nurses making extrapolation to other professionals in the same field questionable. However, nurse practitioners and physicians are equally represented in this sample (62 and 53 participants, respectively). There may also be an additional sampling bias in that professionals who are interested or more confident in their provision of EOL care may have been more likely to respond to the survey, which may lead to skewed results. Furthermore, the lack of ethnic/racial diversity in the sample may have affected the survey results. Additionally, the study does not present information on the specific types of training that comprised “basic EOL training” and how varied levels/types of training may have affected the results.

Conclusions

Basic EOL training and having advance directives among MS professionals were associated with better communication of PC and EOL domains with patients and their care partners. This survey emphasizes the need and importance of EOL training and having advance directives. Future studies should include assessment surveys and PC educational programs to enhance communication between patient/professional dyads about PC and EOL domains.

Footnotes

Acknowledgments

The authors thank Dr. Shiela Strauss for her support, expertise, and assistance in writing this manuscript. They also thank all the MS experts who completed the survey.

Funding Information

No funding was received for this research.

Author Disclosure Statement

Aliza Ben-Zacharia, consultant, Biogen, Greenwich Biosciences, Genentech, and Novartis.

Francois Bethoux, consultant, GW Pharma, Helius Medical Technologies, MedRhythms, Genentech; speakers bureau, Biogen; contracted research, Adamas Pharmaceuticals; royalties, Qr8.

Angelo Volandes has a financial interest in ACP Decisions Nous, a non-profit organization developing advance care planning video decision support tools. His interests were reviewed and are managed by Massachusetts General Hospital and Partners HealthCare in accordance with their conflict of interest policies.

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