Lay Health Workers’ Perspectives on Delivery of Advance Care Planning and Symptom Screening Among Adults With Cancer: A Qualitative Study

Abstract

Introduction:

Advance care planning and symptom screening among patients with cancer require team-based approaches to ensure that these services are equitably and appropriately delivered. In several organizations across the United States, we trained and employed lay health workers (LHWs) to assist with delivering these services for patients with cancer. The aim of this study was to understand LHWs’ views on delivering these services.

Methods:

We conducted semi-structured interviews with 22 LHWs in 6 US-based clinical cancer care settings in 4 large cities. We recorded, transcribed, and analyzed interviews using the constant comparative method of qualitative analysis.

Results:

Participants noted the importance of their role in assisting with the delivery of advance care planning (ACP) and symptom screening services. Participants noted the importance of developing relationships with patients to engage openly in ACP and symptom screening discussions. Participants reported that ongoing training provided skills and empowered them to discuss sensitive issues with patients and their caregivers. Participants described challenges in their roles including communication with oncology providers and their own emotional well-being. Participants identified solutions to these challenges including formal opportunities for introduction with oncology clinicians and staff and grievance sessions with LHWs and other team members.

Discussion:

LHWs from several organizations endorsed the importance of their roles in ensuring the delivery of ACP and proactive symptom screening. LHWs noted challenges and specific solutions to improve their effectiveness in delivering these important services to patients after their diagnosis of cancer.

Introduction

Advance care planning (ACP) and symptom screening are nationally recommended for all patients diagnosed with cancer.^1,2 Despite the importance of these services, patients,³ caregivers,³ providers,⁴ and payers⁵ report significant structural deficiencies in the routine delivery of these care aspects, such as limited workforce capacity⁶ and provider time.⁴ To overcome barriers ACP and symptom screening, stakeholders suggested the use of community or lay health worker-led team-based approaches.⁷

Community or lay health workers (LHWs) are members of the community who are non-professionals and are trained to promote health or deliver health care services.^8-10 Since the 1960’s, in many nations, LHWs routinely deliver health care services across many disease conditions including some aspects of end-of-life care.^11,12 In the United States, the integration of LHWs in cancer care has been limited to cancer prevention and navigation.¹³ In prior work, we created a novel LHW-led intervention to improve the delivery of end-of-life cancer care and trained LHWs to engage patients in discussions regarding ACP and symptom burden.⁷ In 3 pilot projects across the United States, we demonstrated effectiveness of this approach on improved patient experiences with care, reduced cancer symptom severity, and reduced acute care use and total costs of care.^14-16 Between 2013 and 2016, 2 hospital-based and 3 outpatient community-based clinics implemented this program in their cancer clinics.

To achieve greater adoption of this approach in the end-of-life cancer care delivery among other US cancer centers, it is crucial to understand facilitators and barriers from all of the involved stakeholders. In other non-cancer conditions, incorporation of LHWs’ perspectives improved uptake, implementation and sustainability of LHW-led programs.^17-20 While patients and caregivers overwhelmingly accepted and recommended this approach,²¹ experiences of LHWs delivering these services remains unknown.

The objective of this study, therefore, is to evaluate LHWs’ perspectives in delivering ACP and symptom screening services among adult patients with cancer. Specifically, this study seeks to evaluate LHW perspectives on barriers and facilitators to conducting this work in hopes to improve uptake, implementation, and dissemination by cancer centers nationally.

Methods

LHW-Led Program Description

The LHW-led ACP and symptom screening program was developed by the study principal investigator (MP) and implemented across 6 cancer clinics in the United States – 2 hospital-based cancer clinics and 3 outpatient community-based clinics. The clinics were selected based on their interest in improving cancer care delivery through LHW-led approaches. Briefly, community members who were 21 years of age or older, had a desire to improve cancer care, and service-oriented were hired by these 6 cancer clinics as LHWs. Prior training and level of education were not considered in the hiring process. All LHWs participated in 80 hours of skills-based training for ACP and symptom screening and weekly mentored supervision throughout the duration of the projects by the study principal investigator (MP). Upon completion of training, each LHW was paired with newly diagnosed patients with advanced stages of cancer and recurrent disease identified through the electronic health records at each of the clinic sites. LHWs contacted patients weekly by phone to provide education regarding advance care planning using standardized guidelines²² and symptom management and to conduct symptom assessments. Symptom assessments were reviewed by the LHW with nurse practitioners and/or nurses on a daily basis. Over the duration of the 6-month intervention, LHWs assisted patients with articulating their care preferences, identifying their surrogate decision-makers, and documenting questions to relay to the cancer care teams. LHWs encouraged patients to contact their cancer care teams to discuss care preferences, symptom-burden, and questions. Each clinic implemented the core components described above. Two clinics slightly adapted the intervention by extending the duration of the intervention from 6 to 12 months and delivered the intervention to all patients regardless of stage of disease. Additional details of the intervention are previously reported.^14-16

Study Setting and Participants

To understand LHW-perspectives in assisting patients with these services, we invited, by email, all of the LHWs (n = 22), in each of the 6 cancer clinics that implemented this LHW-led approach, to participate in semi-structured interviews. We used no other inclusion or exclusion criteria for LHW participation in this study. LHWs who were interested emailed the study research coordinator to set up a time to learn more about the interview, provide their verbal consent by phone, and schedule the interviews. We conducted each 60-minute interview by telephone from November 2, 2019 until February 15, 2020 using a semi-structured interview guide (see Supplement) for Interview Guide) framed by the Donabedian’s Quality of Care Framework²³ which outlines 3 criteria to improve care: structure, processes, and outcomes. In this Framework, LHWs can assist with overcoming structural barriers to end-of-life cancer care delivery through telephonic provision of services, many of which are traditionally reliant on professional cancer care teams to deliver, thereby increasing processes such as goals of care documentation and outcomes such as goal concordant end-of-life cancer care.

We designed the questions to understand perspectives on assisting with ACP and symptom screening services among patients with cancer and specific barriers and facilitators to conducting this work. We asked participants to describe their perspectives on: 1) feasibility, 2) implementation barriers, and 3) solutions to implementation challenges. Study participants were asked each of the questions in the Interview Guide (see Supplement). Probes and follow-up questions were only asked if that topic was not organically discussed. No follow-up interviews were conducted to clarify or obtain additional information. To maintain privacy, we assured the LHWs that we would not share organization-specific job titles, specific locations, or descriptions of their organizations. The study was approved by the Stanford University Institutional Review Board.

Data Analysis

We digitally recorded, transcribed, and imported all interviews into qualitative data management software (Atlas.ti 7.0). The research team (MP and SK) read samples of the transcribed text and created codes for key points. Through an iterative process, the research team used the codes to create a codebook which was used by 2 experienced coders who independently and consecutively coded full transcripts and discussed discrepancies and modified the codebook. We calculated a Cohen’s kappa to measure coder consistency, using all quotes from the major code categories. Kappa scores ranged from 90-93%, suggesting excellent consistency.²⁴ We performed thematic analysis of the unique 313 quotations covering topics mentioned above and, after iterative analyses, investigators reached consensus with respect to thematic saturation. The analysis was based in grounded theory and performed using the constant comparative method of qualitative analysis.

Results

All 22 (100%) invited LHWs participated. Table 1 shows participant demographic characteristics. The majority were women with equal representation across age groups from 20 to 70 years old with the highest proportion of participants employed in the Southwest. A high proportion of participants self-identified as Hispanic or Latino, Asian, and Black or African American. Table 2 and 3 demonstrate themes revealed by thematic analysis and frequency of themes, respectively, regarding facilitators, implementation challenges and solutions.

Table 1.

Demographics of Participants (n = 22).

Participant characteristics	n (%)
Sex
Men	9 (41)
Women	13 (59)
Age
20-40	7 (32)
41-60	7 (32)
61-70	8 (36)
Ethnic Category
Hispanic/Latino	6 (27)
Racial Category
American Indian/Alaskan Native	1 (5)
Asian	6 (27)
Native Hawaiian or Other Pacific Islander	2 (9)
Black or African American	6 (27)
White	4 (18)
More than One Race	3 (14)
United States Location/Region
Northwest	4 (18)
Southwest	7 (32)
Midwest	4 (18)
Northeast	4 (18)
Southeast	3 (14)
Median Length of Time in Role (Months ± SD)	24.2 ± 5.4

Table 2.

Lay Health Worker Perspectives on Facilitators and Barriers to Advance Care Planning and Screening Symptoms Among Adults With Cancer.

Theme 1: LHWs serve a crucial role in ACP and symptom screening.
A lot of the times when people leave a doctor’s office, they still in doubt about what they were told and they need more explanation. I tell them what to bring up at the appointment. As a patient support, I want to make sure that the doctor explains it better for them so I think a lot of the times the caregivers and the patients are very grateful that they have that extra person they can go to, you know and guide them in the right direction and provide them with what to ask.
So many times when you talk patients, they’re lost, and they don’t know about any of these things like advance care planning or what symptoms to look out for but when you explain and someone like me is there for them and we explain to them they kind of like get it and start doing and talking about these things on their own with the doctors.
One patient, at the beginning he was like why do they want to know the answers to these questions about death and dying and how to die. I had to explain. I told them about their living will which is that its better to know and talk about what they want and to prepare for it. To his doctors he had said that he wanted to do everything to live longer but then to me he said he did not want to ever be on a machine ever even if it did make him live longer. So I said it’s okay to change your mind now that you know and you get to choose, you know you get to choose what is it really that you want, who you want to be making decision for you if you can’t and who you want to sign your directive. Who’s the one that you want to make the decision for you. So then he, he understood and right away he brought his daughter in and we, he changed his decisions about being on a machine, he notarized it. When you have the time you can really explain more to people, like what it is they think they are signing or what they think they are getting for treatment and what the reason is and what they think they understand, then they really understand it better. He had another, a different understanding at first. But when I explained him exactly what was going on and how to ask questions to his doctor to get the answers, he understood and make the decision right away. This takes a lot of time and patience and cannot be done in a quick clinic visit.
Sometimes just talking to patients and going over their goals made them feel better. I had a patient who was very worried about dying. He said he just wanted to see his mother who lived far from him by plane. So then we talked about how to get him to see his mother. He didn’t want the chemotherapy anymore so that he could get on the plane to see her. He then took a trip when he stopped all the treatment and sent me pictures, a picture of his mother like then he said remember when I used to tell you that I will not be able to see my mother so its like, its like wow you know. You work with them and you don’t realize what you do but after you see it … you see what you do for people and how you are helping them.
When you see how what you do helps someone to not go to the hospital when they said that is the last place they want to be to die and when you help their well-being that’s how you know you are making a difference.
So many don’t understand what an advance directive is or that they have options in their care. I hear them say that they thought they just had to do what they were told to do by their doctors and that they didn’t have control. They don’t realize that they have a lot of control on their healthcare and so when I help them to understand that they can make their own decisions and when they do I feel like I am doing something that is important.
The more I did this [talk about advance care planning and symptoms] the more I saw the end of how I was actually helping the patients and knowing that you are helping someone when they need it makes you happy and makes you want to keep going and do this more and more for more and more patients.
To talk to a patient about their wishes and then screen their symptoms, you need a lot of time and many interactions. These things are new to patients. It’s hard to do it in a quick visit with their doctors, especially talking about their values. I can help patients to think through and not feel rushed and to have a supportive ear for when they want to talk again.
There are many ways you treat cancer. But you don’t know which are best for a patient’s life unless you have asked them what they want. That’s what I help do.
Patients don’t tell their doctor what is actually bothering them unless the doctor asks them directly. I let patients know it is important they communicate their symptoms, even if the doctor does not ask about them.
The first visit with doctor the patients get too much information. And, patients don’t get a chance to ask what they want to ask. But with us [lay health workers], we give time to process and plan before they start any treatment so they can know why they are getting the treatment and get their questions answered
Theme 2. LHWs need time to develop trusting relationships to successfully engage patients in advance care planning and symptom assessments.
At the beginning when you just start working with people, it is challenging because you barely know them and, and its just when they get the news about their cancer so that’s when it can be hard. But after time when you build a relationship with them like they open up so much more with you and then you see the trust that is built and how important it is.
With advance planning a lot of the times the patients at the beginning, the trust is not there between the lay health worker and the patients. Its hard to engage but I believe as you get to know them better and they trust you more they’re more willing to engage. The more you do, the more you see how many patients need it and how much they trust you to then bring up the conversation on their own with you. And, it’s a whole lot better when you meet them right at the beginning not after they have had cancer for a while. You can work with them better and then they trust you better.
When you start, for the advanced directives you feel it’s a little uncomfortable but then they, they tend to open up, they say what they want, you know what is their goal, what do they desire.
I had one patient who had cancer a few years before and the cancer came back. And she said I don’t have need your help so I don’t know why you calling me I already have my cancer doctor and I have been through this before. She said I don’t need you to give me a call, I can do the things myself. I just offered her my services and I told her you know I am just here to help, if there is any questions or concerns or anything that I might do or you need, just give me a call, save my number and then she said I do not need your number. I guess she saved it because she called me then 3 weeks later and wanted to talk about all the questions she had and wanted advice about how to ask her doctors these questions and we talked for a long time and now she calls me up every week.
That’s when people start, people open up more when you go a different way. I’ve noticed like if you ask them right away about oh did you take your medications today? Did you check your sugars? Or you ask them about their symptoms and how they are feeling first before you do anything. Sometimes they don’t wanna hear other stuff right away. You ease into it. Then they want to get more personal then you go into it about health and their life. Its different ways its, its different scenarios with the patients.
At first you aren’t always the go to source for help. But then after you help someone with their hard times with other things like finding housing for them, helping managing their medicines, helping them to understand when to call for an ambulance, then they see you as their go to source.
At the beginning it was really hard for me. But as I got more experience with doing this and I got better at it I learned how to engage with the patient more and saw the end result.
So a lot of times, is that you just need to show to the caregiver and patients that you can be reached right away. Sometimes they have to call the doctors office and leave messages and wait and a lot of those times I can respond right away and resolve their issues like helping them to get their medicines delivered to their home, transportation issues. When they leave a doctor’s office and are in doubt and need more explanation then I can do that to make sure they understand. Then they get grateful for doing these things and start trusting you with other things that are more about their wishes. It’s like any relationship you know like a friendship. You need time for trust and then it’s special.
Few start talking right away to me but most didn’t. After a few conversations it gets easier because we get to know each other and build trust.
Theme 3. Ongoing training is important to ensure that LHWs are empowered to discuss sensitive topics with patients and caregivers.
There are different things that come up all the time. We got so much training before we started but then there are things you just don’t know are going to come up. You have to keep training and learning to do this well. At first you need it to know how to begin talking to patients and then you need it to know how to keep the relationship going and then how to change and be flexible when you do this work.
The training isn’t just a one-time thing it is something we do a lot of and it changes all the time because we can’t predict what’s going to happen or what situation will come up.
The trickiest part at the beginning was learning how to do this, like how do you talk to someone about these sensitive things, but then over time with more training I realized that this is just like talking to a friend you know. It’s helpful to get questions answered and to make sure you are on top of everything with the patients and so when we have more training sessions it helps to fill in these gaps and then to teach specific skills as we need them.
It’s hard if you don’t have the right teaching about how to do this. You are the first moment of contact sometimes for them and you are doing multiple things like assessing their understanding of their condition, how much support they have, whether they are getting proper care, whether they are happy with their care, on top of juggling emotional stress that the individual is carrying with them. I have been in conversations where the calls were cut and completely short because they were overwhelmed or crying and then that takes priority over anything else that you were talking about before. You definitely want to know that you are there for them so you aren’t going to bypass any distress that they are having and the teaching I get showed me that that’s an opportunity to let them know that you be an extra shoulder if they need it and it’s something I really like to do now and help others do in our training sessions too.
When I started, I thought I was going to just talk to the person in the program. But after a week, I saw that I have to also talk to the families or friends and that one is tricky sometimes because they can be a little more hesitant about who you are and what you are doing with the person they are trying to protect. So, it was good to talk about this with other coaches and health workers and we created some training and teachings so we could learn some tips on how to reassure people that you are coming in with a good helping hand.
I have been in this position now for almost a year and a half and I would say that I didn’t ever think I could do this with this level of confidence of just being in this role and always learning.
We received the training which helps us to help the patients a lot of the times. And then we do more training when there are things that come up like for example the patient doesn’t know what stage their cancer is and they just have cancer. This is something we talked about in our training and we learned how to help all patients know what symptoms to look at like when they are feeling sick and when they should call the doctor.
This is something that you have to have special skills to do like empathy and so forth. You can be trained and that really helps but you have to have a passion for talking to people and being able to talk to them comfortably.
Our supervisor gave ideas of how to do things better and helped us to think through new situations as they came up … like when we came across a symptom that wasn’t in the questionnaire or when a patient brought something up like wanting to be cremated.
Theme 4. Communication between LHWs and oncology teams can be challenging.
One of the biggest challenges is at the beginning, when the providers don’t know who you are you know most of the time they are like, are you a family member? And you are like no, I am a care coach or lay health worker or patient advocate. I think once you start showing what you do with the patients then the providers get to know what you can do and how you can help.
The first patient you have who has a specific doctor is tough. But it gets easier with the rest of the patients that you have with them because they know you. They actually come out and reach out to you and I think a lot of the doctors appreciate when they see that you can do the things that you can do with the patient, be with them, explain to them, make sure that they are following up with what they need to be, giving them, like letting them know what the symptoms they are having. So I think they [providers] are very grateful when they know there is someone out there who is watching over their patient and assisting their patient in you know whatever it is that the patient needs.
One way is to introduce ourselves and make it part of the way that care is delivered at the clinic so they can know we are part of the team and can understand what I do and how I actually help patients. Then another way to do better with them understanding who we are is to remind them of what we do.
We can do things to help out you know. Like when the doctor orders tests, we make sure that the patient knows what the tests are for and if the doctor needs prior authorization, we will let the doctor’s office know, hey that test without insurance, they need a prior authorization and we gotta get that before the patient can have the test done. So in this way, we make it clear that we are helpful for the patients but also helpful to the doctors so that helps a lot for the doctors to feel like we are on their side too.
When doctors and nurses don’t know you, they don’t want to talk to you so that’s the hardest part introducing yourself and what you do. And it’s intimidating because you aren’t a doctor or nurse.
They didn’t like it at first that I was always talking to their patient. Once they get to know you, though, the providers seem to enjoy that they’ll have somebody on the inside to help with insurance push things through like any prior authorization matters that occur and help with finding other resources.
The doctors don’t know you they don’t want to work with you at first. But then when the patients start getting more active in their care and asking questions and stuff then they are like coming out and reaching out to you.
Some doctors and nurses felt they did a good job talking to patients about goals and symptoms and didn’t think I needed to be part of the team.
When I screen symptoms and patients brought up something I always tell the patient to call the doctor. But the cancer team would tell the patient they didn’t understand what I was doing. So then the patient would feel like they were caught in the middle and I was nervous because I didn’t want to interfere.
We encourage patients to make sure that doctors explain things better and that patients can talk to their doctors openly about what is bothering them and what they want for their care. It seems then doctors and nurses understand a bit better how we support patients by helping them understand that something was unclear. Then the doctors reach out to us directly, start asking us to help make sure patients understand the plan.
Theme 5. Lay health workers need social and emotional support to effectively provide services to patients with cancer.
I think it is hard to have these deep heavy talks all the time. I love what I do but I need someone to just vent to and talk to to make sure I am doing the best job I can and helping the patients. I need my own lay worker, you know.
I feel lucky that I get to know someone like they are no longer a patient but a person who is a part of your life really intense and then it’s hard when you lose them. Without having these support groups for all of us health workers who do this I don’t know how I would get to release my own feelings and grieve.
I don’t know how sad I am but then I get to the end of the day and then I just sit and these waves crash over me. All the talks I had with people I am helping is so good but can be a lot too. I talk to my family about it and to others at work. We started this little group each week where we talk about cases that really affect us and that has helped me out a lot to be able to share what is going on with me.
When I talk to someone and they start crying, it hits me. It’s like the way I had planned for the conversation to go didn’t really go there and then the feelings they are feeling when I talk to them hit me too. I need some time to just be after these phone conversations especially the ones that are like this where I get to hear what someone else is feeling. I make sure that I take a break after each person I talk to so that I can think and feel what I need to.
You really need to build in time to make sure you process all of this grief. Monthly meetings with the palliative care team is helpful. We discuss cases and that is good for me to get support and reminds me of the importance of the work I am doing.
I get to know people at a very special time in their lives. But then I lose them and it really is hard to handle day in and day out. When you have people you work with who can also help you to talk about these things and let you know that you aren’t alone then it helps so much.
We have a chaplain that comes to help us talk about things each week. You don’t really know how much you are dealing with until you get that hour with the group and get to process it all.
I get to know people at a very special time in their lives. But then I lose them and it really is hard to handle day in and day out.
It’s hard to ask patients serious questions at a time when they are so vulnerable. I see my patients die the way they wanted to die or not get treatment if they didn’t want it or feel more in control of their care. That gives me reminders that what I do is helping. I have support at home and I talk it through with other health workers too.
You form very strong bond with people like you are their family and then they are gone. I have so much sad in me when this happens.
I take home all this grief because what we do is deep. It’s rewarding but it is a lot to think about and it can really get to you after a while. It’s good to have ways to talk with each other and our families to make sure we are strong enough to keep doing this important work.

Table 3.

Frequency of Themes.

Theme	Supporting quote	Number of unique interview participants expressing themes
LHWs serve a crucial role in ACP and symptom screening.	We [Lay Health Workers] play a bit part in making sure that patients are really advocates for themselves and discuss their care wishes and their symptoms with their cancer teams.	22/22
LHWs need time to develop trusting relationships to successfully engage patients in advance care planning and symptom assessments	It takes a long while to get to really know someone and trust them enough to talk honest about sensitive things like who will help make decisions for you if you are too sick and what symptoms you are feeling from your cancer.	21/22
Ongoing training is important to ensure that LHWs are empowered to discuss sensitive topics with patients and caregivers.	Training is a part of this role that should never and doesn’t end. The training helps to make sure you are confident in doing what you are doing as a lay health worker.	18/22
Communication between LHWs and oncology teams can be challenging	We all seem to want the best for the person in front of us. But initially there isn’t much exchange between us [lay health workers]and the cancer doctors and cancer teams.	15/22
Lay health workers need social and emotional support to effectively provide services to patients with cancer	These things are really important to talk about but it is hard. It’s even worse when someone passes away. It’s good to talk about how to handle these things and deal with the grief.	22/22

Theme 1: LHWs Serve a Crucial Role in ACP and Symptom Screening

Participants noted several challenges that patients face, including oncologists’ time to address ACP and screen cancer symptoms. Respondents noted that patients disclosed their reluctance to discuss care preferences and symptom burden with oncologists and other professional team members. Participants highlighted the importance of the LHW role in overcoming barriers. Specifically, participants noted that LHW provision of time, emotional support and encouragement empowered patients to prepare, reflect and discuss their care preferences and symptom-burden with their oncologists and cancer teams.

One stated, “I give patients time and a safe place to think through these issues about their cancer. They don’t get time and space when they see their cancer teams. This is special about my relationship as I help them prepare for their care.” [Participant 15]

Another stated, “All my patients tell me they don’t feel comfortable talking about their wishes and symptoms. They don’t want to bother the doctor and don’t know how to bring it up.” [Participant 3]

A participant noted, “One patient said he wanted to spend time with his granddaughter and go fishing but the treatments caused him so much nausea he couldn’t get to do these things. I encouraged him to ask the doctor for how to get to what he wishes. Now he gets a break in his treatments and he sends me pictures when he goes fishing and with his granddaughter.” [Participant 8]

Theme 2. LHWs Need Time to Develop Trusting Relationships to Successfully Engage Patients in ACP and Symptom Assessments

Participants reported that patients are hesitant to discuss ACP and symptom-burden in initial encounters. Participants noted the importance of time to establish relationships and facilitate open discussions regarding care preferences and symptom burden. Participants noted the importance of establishing relationships with patients soon after a cancer diagnosis to encourage trust.

One participant stated, “Many don’t want to open up about goals and wishes or file advance directive or decide their surrogate. It takes time to build relationships and then once the patient knows me they open up a lot more than they do with their doctors.” [Participant 11]

Another noted, “I was this new person and asking about personal questions and then screening symptoms. So a lot were worried to talk with me at first. After a few talks they talk deep about goals and values and what was bothering them and I could support them to bring this up with their doctors.” [Participant 4]

One noted, “When patients are in the middle of treatment or end of their treatment or have had a cancer and it comes back it is harder to get them to trust you. They already have their care team and established a way of how they get care. It is easier when you can build the relationship early after they are told they have cancer.” [Participant 2]

Theme 3. Ongoing Training Is Important to Ensure That LHWs Are Empowered to Discuss Sensitive Topics With Patients and Caregivers

Participants reported that training alleviated LHWs’ initial discomfort in conducting this work. Specifically, participants noted ongoing training empowered and provided LHWs with tools to effectively deliver ACP and symptom screening. Participants noted meetings with other LHWs fostered continued growth in this role.

One participant stated, “Every day is getting trained since I learn something new. Good training is important for me to feel comfortable with patients and their loved ones.” [Participant 7]

Another stated, “I personally don’t talk about my symptoms and care wishes. So, I had to get really comfortable with how to do this. Training gave me some good ways to have these important discussions. Plus, we have these weekly meetings to discuss cases and learn from each other. I feel like I am now becoming expert at what I do because of these meetings.” [Participant 20]

One participant dissented and reported that personal characteristics were more important than training.

“Talking to patients doesn’t get easier even if you were in training and learned what to say in exactly every single situation. You have to have the personality for this kind of position and role. You have to be a really giving person and kind hearted but have a lot of emotional maturity and flexibility. Not everyone can be trained.” [Participant 22]

Theme 4. Communication Between LHWs and Oncology Teams Can Be Challenging

Participants highlighted the importance of the relationship between the LHWs and the oncology teams. Participants reported initial communication challenges with the oncology team, specifically regarding the role and value of the LHW. Participants noted solutions to overcoming these challenges. Specifically, formal introductions of LHWs and their roles with the clinical team and staff could assist. Other approaches such as supporting oncology teams with ensuring patient follow-up, transportation, and prior authorization, were noted as ways to help to overcome communication challenges with the oncology team members.

One participant stated, “At first, the cancer teams were confused about me. Then, as more patients were in the program, and they saw that patients would come to their appointments prepared, the cancer teams asked me for advice, pulled me into discussions, and started sending patients to me like part of the team.” [Participant 12]

Another stated, “One way is to do stuff that helps the doctors know that we are helping them too. We make sure that the patients follow up their appointments, we remind them, make sure they have transportation, make sure that if there is a language barrier that the doctor’s office knows ahead of time or tell the patient someone has to go with them. We are there for the patient but our work can help all members of the team so that helps a lot to make a good relationship with the cancer team because we are all there for the patient.” [Participant 5]

Another stated, “Every so often, it is good to formally remind the doctors that lay health workers are here and we are helping the patient between clinic visits to talk about their goals and wishes and to make sure they are getting their symptoms taken care of.” [Participant 21]

One participant dissented, noting that from the inception of the program LHWs were readily accepted as part of the care team by the clinicians.

“All of the doctors and nurses and medical staff from the first day we started told me that they liked that the patient has someone helping them, and they liked that we [LHWs] helped with patient needs. I think it really just depends on the doctors and nurses and medical staff really as to if they are going to accept you as part of the team or not.” [Participant 10]

Theme 5. LHWs Need Social and Emotional Support to Effectively Provide Services to Patients With Cancer

Participants discussed emotional stresses caused by the work they conduct specifically in experiencing deaths of patients with whom LHWs had formed close relationships. Participants discussed the need for social support to effectively conduct this work. Solutions included dedicated time and support from personal networks of families and colleagues to enable LHWs the opportunity to reflect and discuss emotional stresses.

One participant noted, “I learned that there are no cures for many patients. I would be so close to them and then they passed away. Yes, this means that the work I do is even more important. But, it doesn’t make it easier mentally to do all of this.” [Participant 6]

One stated, “We [LHWs] get support from each other. This is my own safe space to cry and so I can be free to be sad.” [Participant 9]

Another stated, “I started talking to my family about my goals and wishes and that helped me to be a better coach to patients about these issues.” [Participant 1]

Discussion

This study evaluated LHW perspectives and their role assisting patients with cancer in ACP and screening symptoms. Our study uncovered facilitators and barriers to conducting this work that could assist with improving the implementation and dissemination of this approach nationally.

Our study identified several facilitators to ensure that ACP and symptom screening are routinely provided to patients and their caregivers. LHWs noted the role they play in ensuring that patients receive supportive cancer care. Consistent with prior literature documenting the importance of relationships for successful engagement of patients in ACP,^25,26 LHW participants noted the influence of time and their unique position in bridging the gap between community and health care systems to establish and maintain a trusting relationship with patients. Our findings, similar to previous studies which utilized nurses or clinicians to conduct ACP,^25-27 also revealed the significance of ongoing and in-depth training specifically related to introducing serious and sensitive topics with patients.

LHWs reported challenges that are consistent with previously reported barriers by professional clinicians. Communication barriers with oncology teams, for example, are consistent with prior studies that demonstrate the need for effective knowledge and appreciation of roles of other members of the inter-professional team.^28,29 Power differentials between team members can serve as an impediment to high quality cancer care delivery. While LHWs suggested ways to overcome these challenges, a more formal approach is needed to ensure effective team-based care. Secondly, as shown in other studies, despite the importance of processing grief caused by providing care for patients with life-threatening illnesses,³⁰ few integrated support services address this unmet need among healthcare providers.³¹ Our study demonstrated the need for formal approaches to ensure that LHWs are emotionally supported while conducting this work. LHWs universally acknowledged that regular meetings with colleagues are important to discuss emotions, grief, personal challenges and rewards and provide a safe space to reflect on the existential aspects of their role. Similar to other studies,³² meetings with colleagues, chaplains, or palliative care teams foster personal reflection and promote a sense of community to affirm roles when providing care for seriously ill populations.

This study must be interpreted in the context of limitations. First, LHWs were employed in the United States and deliver specific cancer care services and therefore their experiences may not be generalizable to the experiences of LHWs in other contexts. Secondly, while we included all of the LHWs who we were aware of that deliver supportive cancer care, it is possible that the perspectives of all the LHWs who may be conducting this work were not included. Our sample size, however, was sufficient to attain thematic saturation. Finally, participants were comprised of heterogeneous racial/ethnic categories and mostly women. However, these demographics are consistent with LHW programs globally.^33,34

Conclusions

LHWs are an important workforce that can overcome many structural deficiencies in the delivery and uptake of ACP and symptom screening services among patients with cancer. LHWs are uniquely positioned to develop close and trusting relationships with patients and caregivers but need time to develop these relationships, ongoing training, open communication with oncology providers, and emotional support to effectively conduct this work. Due to variation in uptake of these evidence-based LHW-led approaches across cancer clinics, this deeper appreciation of LHWs’ perspectives will be used in future work to help to adapt the implementation of these approaches for dissemination among other practices nationally.