Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States

ABSTRACT

Introduction/Aims

Little is known about the state of palliative care (PC) for people with ALS (pALS) in the U.S. We aimed to examine current practice regarding PC for pALS and how it can be improved.

Methods

ALS and PC clinicians completed surveys about: (1) strengths and limitations of PC for pALS provided by ALS and PC teams, (2) reasons for and barriers to referring to specialty PC, and (3) how PC could be improved.

Results

One hundred forty‐one ALS clinicians from 72 institutions and 242 PC clinicians from 96 institutions in 30 states completed surveys. Half of ALS clinicians reported they are able to manage patients' pain (55%) and mood symptoms (52%) “very well.” Fewer reported managing care partner needs (43%) and spiritual/existential distress (29%) “very well.” Fifty‐eight percent of pALS are referred to outpatient PC and 69% to hospice at some point in the illness. Barriers to referring include that PC programs are not sufficiently available to pALS. ALS clinicians generally felt satisfied with PC teams' care, but PC clinicians were less confident managing motor symptoms (51% confident) and helping care partners understand how to provide care (51%) and use equipment (25%). Most clinicians felt the quality of PC provided by ALS (77%) and PC (90%) teams is good/excellent. However, qualitative comments highlighted that both ALS and PC clinicians have knowledge gaps, and collaboration between ALS and PC clinicians should increase.

Discussion

Clinician education, expansion of PC services, strengthened collaboration, and further research about PC for pALS are needed.

1. Introduction

People living with ALS (pALS) experience physical symptoms such as progressive weakness, functional decline, sialorrhea, shortness of breath, and pain; psychological distress including depression, anxiety, and existential concerns; and challenging decisions about their care [1, 2, 3, 4]. Additionally, family members and other care partners of pALS frequently struggle with caregiving burden, stress, and grief [3, 4, 5, 6, 7, 8, 9].

Palliative care is an approach to care for people living with serious illness and their care partners focused on improving symptoms and stress at any stage of the illness [10]. It includes primary PC, which is PC that can be provided by any medical professional including ALS clinicians, and specialty PC, which is PC provided by a PC specialist or team [11]. Palliative care has been shown to improve physical and psychological symptoms as well as the quality of life of people and families facing many types of serious illness, including neurologic illnesses [12, 13, 14, 15, 16, 17]. Early data suggest that specialty PC can improve symptoms, quality of life, and advance care planning for pALS specifically [18, 19, 20, 21]. Accordingly, patients, care partners, ALS clinicians, and international practice guidelines have called for increased integration of PC into ALS care [9, 22, 23, 24, 25, 26].

However, a recent survey study revealed that only 27% of ALS specialty clinics in the Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) include PC specialists in the care team, and even these embedded PC specialists often meet patients at late stages of the illness [27]. Multiple reasons for incomplete and late integration of PC into ALS care have been hypothesized, including lack of availability of PC teams that have expertise in ALS, lack of knowledge about PC on the part of ALS clinicians as well as patients and care partners, and lack of clear and consistent guidelines for when to involve PC [22, 27]. Further, little is known about how well ALS and PC teams across the U.S. are currently meeting the PC needs of pALS and where gaps in quality of care, service availability, and clinician knowledge and confidence exist. To improve our understanding, we aimed to survey a broad sample of ALS and PC clinicians throughout the U.S. about how primary and specialty PC for pALS is currently occurring and how it could be improved, in order to identify areas to target in future educational, quality improvement, and program development efforts.

2. Methods

2.1. Survey Development

A multicenter team was convened including five neurologists, five PC physicians, three members of nonprofit ALS advocacy organizations, two survey researchers, one research coordinator, and a care partner representative. The team developed two related surveys—one for interdisciplinary ALS clinicians and another for interdisciplinary PC clinicians who have provided care to pALS. Survey questions were adapted from prior, published studies and revised by the study team through a consensus process with the goal of including questions to understand: (1) the current state of primary PC provided by ALS teams, (2) reasons for and barriers to referring pALS to specialty PC, (3) the current state of specialty palliative and hospice care, (4) ideas for how primary PC, specialty PC, and hospice care could be improved, and (5) how clinicians would like to learn and improve their practice [28, 29, 30]. Draft surveys were reviewed by a Patient and Family Advisory Council, which included three pALS and four care partners, at two points in the survey development process to lend input and suggest revisions.

The final ALS clinician survey included 27 closed‐ and 11 open‐ended questions and seven brief demographic items (Appendix S1). The final PC clinician survey included 27 closed‐ and eight open‐ended questions and six demographic items (Appendix S2). The PC clinician survey included an early question that asked how many pALS the respondent typically cares for annually. Respondents that indicated that they care for zero or one pALS per year were not asked any further survey questions because of their limited experience with this patient population.

The surveys were built into the Qualtrics^XM platform. They were initially piloted with members of the survey development team, then by members of the interdisciplinary ALS and PC teams at the University of California, San Francisco, to ensure clarity, acceptability, and appropriate length.

2.2. Survey Distribution

The ALS clinician survey was broadly distributed through e‐mails to members of the Northeast ALS Consortium (NEALS), the Western ALS Consortium (WALS), the International Neuropalliative Care Society (INPCS), and the American Academy of Neurology (AAN). The PC clinician survey was distributed through e‐mails to the Center to Advance Palliative Care (CAPC), the Palliative Care Quality Collaborative (PCQC), the International Neuropalliative Care Society (INPCS), and the Cambia Health Foundation Sojourns Scholar program listservs. Informed consent was obtained from all study participants prior to survey completion.

2.3. Analysis

PC clinicians who reported caring for an average of zero to one pALS per year were excluded as they were not considered to have sufficient experience with this patient population. Frequencies were calculated for categorical variables, and means, medians, and ranges were reported for continuous variables. Bivariate associations between categorical variables were assessed using chi‐squared tests (χ ²). A two‐sided alpha level of < 0.05 was used to determine statistical significance. All analyses were performed using SPSS for Mac, version 29 (IBM, Armonk, NY).

Open‐ended responses were analyzed using Rapid Qualitative Analysis methodology, a coding technique developed by Hamilton and colleagues which has been shown to be appropriate for analysis of open‐ended survey responses and structured qualitative interviews [31, 32, 33, 34, 35, 36]. Data were first analyzed by two authors (KEB and GK) and categorized by their primary meaning, resulting in codes such as “primary PC education” and “more proactive guidance.” When there was a discrepancy between how comments were categorized by KEB and GK, a third author (SZP) provided a tie‐breaking perspective. Subsequently, codes were grouped into overarching themes by KEB and GK and representative quotes were selected for each theme. Throughout the analytic process, data from ALS and PC clinicians were compared.

Approval for this study was obtained from the University of California, San Francisco Institutional Review Board (#23‐40639).

3. Results

3.1. Characteristics of Respondents

One‐hundred and forty‐one interdisciplinary ALS clinicians from 72 institutions in 30 states and 242 interdisciplinary PC clinicians from 96 institutions in 30 states completed a survey. Thirty‐nine PC clinicians reported seeing one or fewer patients with ALS per year and were excluded; the remaining 203 PC clinicians were from 89 institutions in 30 states. Overall, respondents were largely white, women, and a highly interdisciplinary group of clinicians (Table 1).

TABLE 1.

Clinician and practice characteristics.

Characteristic	ALS clinicians n (%) n = 141	PC clinicians n (%) n = 203
Clinical discipline*
Palliative care physician	3 (2)	84 (41)
ALS physician	32 (23)	8 (4)
Rehabilitation therapist	45 (32)	—
Social worker	15 (11)	50 (25)
Advanced practice provider	11 (8)	35 (17)
Nurse	21 (15)	17 (8)
Chaplain	—	10 (5)
General neurologist	2 (1)	—
Other	13 (9)	8 (4)
Gender identity
Male	32 (24)	43 (22)
Female	103 (76)	157 (79)
Non‐binary/prefer not to say	6 (4)	3 (1)
Race
Native American	1 (1)	1 (1)
Asian	14 (11)	26 (14)
Black	8 (6)	6 (3)
White	101 (78)	145 (80)
Native Hawaiian/Pacific Islander	—	—
Other	5 (4)	3 (2)
Prefer not to say	12 (9)	22 (11)
Ethnicity
Hispanic/Latino/a	8 (6.3)	3 (2)
Not Hispanic/Latino/a	119 (94)	182 (98)
Prefer not to say	14 (10)	18 (9)
Age category (years)
< 30	10 (7)	8 (4)
30–39	50 (37)	78 (40)
40–49	38 (28)	63 (32)
50–59	20 (15)	27 (14)
60–69	15 (11)	18 (9)
70+	2 (2)	1 (1)
Prefer not to say	6 (4)	8 (4)
Years providing care in specialty
Mean	9	9
Median	7	7
Range	1–40	1–30
ALS care setting
Multidisciplinary ALS clinic (Yes)	132 (95)	—
Palliative care setting
Inpatient & outpatient PC	—	137 (68)
Inpatient PC only	—	0 (0)
Outpatient PC only	—	41 (20)
Hospice & PC	—	25 (12)
Hospice only	—	0 (0)
Composition of PC team**
Social worker	—	168 (83)
Chaplain	—	119 (59)
Nurse	—	105 (52)
Advanced practice provider	—	126 (62)
Physician	—	178 (88)
Other	—	19 (9)
Do you have a specialty‐trained PC clinician on your ALS team? (Yes)	91 (65)	—
Are you embedded in an ALS team? (Yes)	—	27 (13)
ALS patients seen annually
2–5	—	123 (61)
6–11	—	36 (18)
12–36	—	21 (10)
> 36	—	23 (11)

Abbreviations: ALS, amyotrophic lateral sclerosis; PC, palliative care.

^*Some respondents were of more than one clinical discipline (e.g., PC physician and ALS neurologist).

^**Typical PC team composition when seeing patients with ALS.

3.2. Respondent Practice Characteristics

The vast majority of ALS clinicians reported working in a multidisciplinary ALS clinic and all PC clinicians worked in outpatient PC (Table 1). Nearly two‐thirds of ALS respondents reported that they had a specialty‐trained PC clinician on their ALS team, whereas fewer PC respondents stated they were embedded in an ALS team. The majority of PC respondents saw two to five pALS annually.

3.3. ALS Clinicians' Self‐Assessment of Their Team's Ability to Address Palliative Care Needs

ALS clinicians rated how well their team was able to address patients' and families' PC needs, when they arise (Figure 1). About half felt their team was able to address patients' pain and mood symptoms “very well.” Even fewer felt their team was able to address family/care partner distress or spiritual/existential distress “very well.” Common concerns about ALS teams' ability to address patients' and care partners' PC needs included inadequate staffing (32%), a feeling that they are not well set up to support care partners (32%), lack of time in visits (29%), and challenges or reluctance to prescribe opioids (23%). However, only 12% of respondents said that PC needs are not a high priority for patients and even fewer (7%) said that these needs are not a high priority for their team. Representative comments about the biggest challenges associated with their ALS team addressing PC needs included: “There's already so much to cover in an ALS clinic session and patients/families get tired and overwhelmed,” and “When symptoms are complex it requires dedicated attention and close follow‐up but we have inadequate appointment availability.”

FIGURE 1.

ALS clinicians' self‐assessment of their ability to address palliative care needs.

3.4. Reasons for and Barriers to Referring to Specialty Palliative Care

On average, ALS clinician respondents reported that 58% of their patients are referred to outpatient specialty PC at some point in their illness, 35% are referred to inpatient specialty PC, and 69% are referred to hospice. Common reasons for referring to specialty PC are shown in Figure 2. Additionally, respondents stated that an average of 25% of their patients request a referral to specialty PC.

FIGURE 2.

Reasons for referring to specialty palliative care. QoL, quality of life. *Clinicians can refer patients to palliative care for more than one reason.

Per ALS clinicians, significant barriers to referring to specialty PC include that specialty PC is not available or accessible and it is too burdensome for patients to have to see another medical team (Table 2). In fact, of ALS respondents who did not have a PC clinician on their team, 51% reported not having sufficient access to PC within their institution and 43% reported not having sufficient access to PC outside their institution. Few respondents said that concerns about the quality of care provided or that specialty PC teams can complicate patients' care are barriers to referring.

TABLE 2.

Barriers to referring to specialty palliative care (n = 141).

Barriers	Not a barrier n (%)	Somewhat of a barrier n (%)	Substantial barrier n (%)
It is too burdensome for patients to have to see another medical team	61 (45)	54 (40)	21 (15)
Specialty PC is not available or accessible for pALS	74 (54)	41 (30)	21 (15)
Patients will be upset if they are referred to PC	79 (59)	49 (36)	7 (5)
Insufficient time to introduce specialty PC and refer	89 (66)	35 (26)	11 (8)
Concern about the quality of care provided by PC	105 (78)	21 (16)	9 (7)
Specialty PC teams can complicate patients' care	106 (79)	24 (18)	5 (4)

Abbreviations: pALS, people living with ALS; PC, palliative care.

3.5. ALS Clinicians' Satisfaction With Specialty PC

The large majority of ALS clinicians reported that they were satisfied or highly satisfied with the PC team's ability to assist with a wide range of needs when patients were seen by specialty PC (Figure 3). However, an exception to this was that only 62% of ALS respondents were satisfied with the PC team's ability to address dyspnea. In a qualitative comment about what specialty PC teams could do better one ALS clinician said, “Dyspnea—use volume vent instead of oxygen. Less morphine on less impaired patients.”

FIGURE 3.

ALS clinicians' satisfaction and PC clinicians' confidence with Specialty PC. ACP, advance care planning; CPs, care partners; EoL, end‐of‐life; MAID, medical aid in dying; Meds, medications; Re, regarding.

3.6. PC Clinicians' Confidence Providing Care

In comparison to ALS clinicians' level of satisfaction with PC, PC clinicians had lower confidence in their team's ability to assist with many needs (Figure 3). For example, only one‐quarter of PC respondents felt confident in their team's ability to help with equipment needs and half felt confident in their team's ability to advise care partners about how to provide hands‐on care.

3.7. Overall Satisfaction With Primary and Specialty PC

Three‐quarters of PC clinician respondents rated the quality of primary PC provided by ALS teams as “good” or “excellent” (Figure 4). The large majority of all respondents rated the quality of outpatient and inpatient specialty PC and hospice, as “good” or “excellent.” There was broad agreement that, “Specialty palliative care should be offered to all patients with ALS as part of comprehensive ALS care” (Figure S1).

FIGURE 4.

Overall quality of primary PC, specialty PC, and hospice care. PC, palliative care; SPC, specialty palliative care. *ALS clinicians were not asked to assess the quality of primary PC.

3.8. Ideas for Improvement

Qualitative comments about what could improve the quality of primary PC provided by ALS teams emphasized that education—including about communication skills, advance care planning, pain management, and describing palliative care and hospice—would be beneficial (Table S1). Additionally, respondents commented that ALS teams should provide more proactive, advanced preparation for what is to come with the illness; they would benefit from more psychosocial clinicians (e.g., social workers) on their teams to provide emotional support to patients and care partners, and they should routinely screen for PC needs and distress and introduce the option of specialty PC earlier in the course of illness.

Qualitative comments about what could improve specialty PC for ALS focused on how PC clinicians would benefit from a better understanding of ALS, including the course of the disease, prognostication, medications for ALS as well as symptoms of the illness, equipment, and community resources (Table S1). Comments also highlighted the need for improved access to specialty PC for pALS, closer collaboration between PC and ALS teams (e.g., having embedded or dedicated PC clinicians for this population and/or more consistent working relationships), and more clarity about the difference between PC and hospice.

Both groups of clinicians most commonly stated that they have about 3 h to devote to education in this area over the next year, and they would best learn through online webinars, presentations at meetings, and/or on‐demand online resources (Table S2).

3.9. Referring to Hospice and Ideas for Improvement

One‐quarter of respondents (26% of ALS clinicians, 26% of PC clinicians) reported referring patients with ALS to hospice later than they would otherwise, or not at all, because of concern that they will not get optimal care, equipment, or services in hospice. In qualitative comments, they explained that hospice clinicians need more knowledge about ALS and the hospice benefit should ideally cover ALS therapeutics (e.g., edaravone, dextromethorphan/quinidine), rehabilitation services, and equipment (e.g., noninvasive ventilators) that can contribute to comfort and quality of life for pALS (Table S1).

4. Discussion

National surveys of interdisciplinary ALS and PC clinicians identified areas where ALS clinicians feel unable to consistently meet the needs of pALS and their care partners, including addressing pain, mood symptoms, and existential distress as well as supporting care partners. Despite overwhelmingly agreeing that all patients with ALS should be offered PC, ALS clinicians refer only about half of their patients to outpatient PC and identify barriers to referring, including lack of PC services available to pALS. ALS clinicians have high satisfaction with PC services, but PC clinicians identify areas where their knowledge and care can be improved. These findings can provide direction for clinician education, program development, and future research.

A substantial literature has demonstrated the profound and wide‐ranging needs of pALS and their care partners [3, 4, 5, 6, 7, 8, 37, 38, 39]. We found that many ALS clinicians do not feel able to consistently address all of their patients' and care partners' needs, even when they work in multidisciplinary ALS clinics which are recognized as the high‐quality standard of care [40]. Bolstering education for all ALS clinicians about core PC topics—including pain management, communication, and providing psychosocial/existential support—is warranted and could help ALS clinicians provide elements of primary PC better while improving their job satisfaction [41, 42]. Psychosocial staffing should also be increased on ALS teams given the high level of distress experienced by many patients and care partners facing ALS [40]. Further, routine screening for PC needs and clear guidelines for how to address identified needs, including through the timely involvement of specialty PC when indicated, could improve the quality and consistency of ALS care [14]. This could be achieved for pALS through the use of patient questionnaires, such as the ALS Specific Quality of Life Short Form, and/or tailoring clinician note templates, but more research is needed to determine how to best do this [43].

It is notable that nearly half of ALS clinicians reported that they do not have sufficient access to specialty PC services. This finding is consistent with findings from a European study [29] and speaks to a capacity challenge in specialty PC that needs to be addressed. Despite substantial growth in outpatient PC over the past two decades, most outpatient PC services are still housed in cancer centers and most PC expertise and evidence is focused on people with cancer [44]. Neuropalliative care is an area of practice and research that has grown significantly in recent years, promoted by the creation of the International Neuropalliative Care Society and some impactful studies [14, 18, 28, 41, 42, 45]. However, much growth and continuing education in the field of PC are needed to be able to scale services to meet the specialty PC needs of people with neurodegenerative diseases including ALS [45, 46]. Further, more research is needed to build an evidence base so that PC clinicians can provide care that is optimized for the unique needs of pALS [45].

Given that there were areas for which many PC clinicians did not feel confident in their team's ability to provide care to pALS, more education about ALS should be integrated into PC training programs and continuing education, particularly since only 5%–10% of PC specialists are neurologists [47]. However, most PC respondents reported seeing few pALS annually and having little communication with ALS clinicians. Therefore, perhaps an even more impactful intervention than education would be developing more consistent working relationships between PC and ALS clinicians. Increasing the number of PC clinicians who work closely with ALS teams could achieve multiple goals simultaneously, including raising ALS clinicians' awareness of PC, lowering the barrier to referring to specialty PC, providing on‐the‐job education about ALS to the PC clinicians, and achieving more highly coordinated care. PC clinicians could also benefit from observing colleagues with more extensive experience caring for pALS.

This study has a number of limitations. First, most ALS clinician respondents worked in multidisciplinary ALS clinics, so we have a limited ability to understand the perspectives of community‐based clinicians. A high percentage of ALS clinicians reported having a PC specialist on their ALS team, and they were likely more invested in PC for ALS, on average. Most respondents were white and women. A higher percentage of PC than ALS clinicians were prescribing providers. Most PC clinicians see few pALS annually; thus, their perspectives are based on limited experiences. We were not able to determine the survey's response rate because it was disseminated through organizations with broad membership and no ability to track how many eligible clinicians it reached. Finally, it is important to note that this survey study reports solely on clinicians' perspectives and not actual care patterns or health outcomes.

In conclusion, this study provides strong endorsement of PC for pALS, whereas highlighting the need to bolster bi‐directional clinician education, specialty PC services, collaboration between PC and ALS clinicians, and research. An ongoing study is gathering additional perspectives from patients and care partners to provide further insights. A national PC for ALS Working Group including clinicians, researchers, pALS, care partners, and advocates has been established to advance efforts informed by these findings.

Author Contributions

Kara E. Bischoff: conceptualization, investigation, funding acquisition, writing – original draft, methodology, validation, visualization, writing – review and editing, project administration, formal analysis, supervision. Gayle Kojimoto: project administration, data curation, visualization, writing – review and editing. David L. O'Riordan: formal analysis, writing – review and editing, methodology. Yaowaree L. Leavell: writing – review and editing, investigation. Samuel Maiser: writing – review and editing, investigation. Astrid Grouls: writing – review and editing, investigation. Alexander K. Smith: writing – review and editing, funding acquisition, investigation, methodology, supervision. Steven Z. Pantilat: investigation, funding acquisition, methodology, writing – review and editing, supervision. Benzi M. Kluger: conceptualization, investigation, funding acquisition, methodology, writing – review and editing. Ambereen K. Mehta: investigation, writing – review and editing, conceptualization.

Ethics Statement

We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Figure S1.mus28458‐sup‐0001‐FigureS1.

Table S1.mus28458‐sup‐0002‐TableS1.

Table S2.mus28458‐sup‐0003‐TableS2.

Appendix S1.mus28458‐sup‐0004‐Supinfo1.

Appendix S2.mus28458‐sup‐0005‐Supinfo2.

Bischoff K. E., Kojimoto G., O'Riordan D. L., et al., “Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States,” Muscle & Nerve 72, no. 3 (2025): 455–463, 10.1002/mus.28458.

Data Availability Statement

Original data can be made available by request.