Seeking Compensation for Mesothelioma: Investigating why Individuals do or do not seek Workers Compensation Benefits in British Columbia

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1 Seeking Compensation for Mesothelioma: Investigating why Individuals do or do not seek Workers Compensation Benefits in British Columbia July 2013 Principal Investigator/Applicant Mieke Koehoorn RS2010-IG32

2 All rights reserved. WorkSafeBC encourages the copying, reproduction, and distribution of this document to promote health and safety in the workplace, provided that WorkSafeBC is acknowledged. However, no part of this publication may be copied, reproduced, or distributed for profit or other commercial enterprise or may be incorporated into any other publication without written permission of WorkSafeBC. Additional copies of this publication may be obtained by contacting: Research Services 6951 Westminster Highway Richmond, B.C. V7C 1C6 Phone (604) / Fax (604)

3 Seeking Compensation for Mesothelioma: Investigating why Individuals do or do not seek Workers' Compensation Benefits in British Columbia Project RS2010-IG32 Submitted July 2013 Hurrell, AC Koehoorn, M (Principal Investigator and Contact Person) 1 McLeod, CB Marino, S Demers, PA Lee, C Pomaki, G Smok, S Professor, School of Population and Public Health University of British Columbia 2206 East Mall Vancouver, BC V6T 1Z

4 Acknowledgements The investigators and research staff wish to sincerely thank the individuals with mesothelioma, their families and the physicians for their participation in this study. The information collected from your experiences is extremely beneficial to developing strategies to increase awareness of mesothelioma as an occupational disease and of workers compensation benefits. The project was supported in part by an Innovation at Work grant from WorkSafeBC and by a donation from the AREA (Asbestos-related Research, Education and Advocacy) Fund. The research team is also support by the Partnership for Work, Health and Safety (www.pwhs.ubc.ca), an agreement between WorkSafeBC and the University of British Columbia to conduct research of policy relevance to the workers compensation system. M. Koehoorn was supported in part by a Michael Smith Foundation for Health Research Senior Scholar Award. 2

5 Table of Contents Main Messages... 4 Executive Summary... 5 Methods... 8 Results Sample Characteristics and Recruitment Results Compensation Status and Work History Study Aim #1 Understanding Why Individuals Do or Do Not Seek Compensation. 12 Study Aim #2 Barriers and Facilitators for Applying for Compensation Study Aim #3 Understanding the Role of the Physician (Physician s Perspective/Experiences/Knowledge) in the Compensation Process Discussion Limitations of the Study Conclusions/Recommendations for Policy and Practice References

6 Main Messages Individuals with mesothelioma and their families rely heavily on physicians as trusted sources of information for both medical and compensation-related issues; other information sources are consulted (e.g. Internet) but are considered overwhelming or even scary. Individuals with mesothelioma and their families perceive the process for filing a compensation claim as complicated/bureaucratic procedures (and uncertain); however, once contact had been made with the compensation system, individuals and their family members have a beneficial experience. Most individuals with mesothelioma rely on an advocate to initiate the claim process (e.g. filing the necessary forms employer report, physician report). This process seems to work most smoothly when the physician initiates the claim process by filing a Physician Report form. Overall, among a random sample of physicians who would typically deal with occupational diseases (respirologists, medical oncologists, thoracic surgeons), physicians were aware of asbestos and mesothelioma as an occupational exposure and a compensable disease. They also tended to agree with statements that they were unfamiliar with the workers compensation system, that helping individuals with mesothelioma seek compensation is time consuming, and that the compensation process is a barrier for their patients. These findings have prompted recommendations to increase awareness of occupational exposures and related diseases, and workers compensation processes, among physicians and the medical community. In response to the study findings, the investigators met with the UBC s Faculty of Medicine ehealth Office to explore how modern communication technologies can be used to increase awareness among physicians. 4

7 Executive Summary Introduction: Despite the strong link between occupational exposure to asbestos and mesothelioma, previous research has shown that only 50% of individuals with mesothelioma in British Columbia, as well as other jurisdictions, have a compensation claim for their disease. This is largely as a result of workers with mesothelioma not seeking compensation. The aims of the current research project were to a) investigate and understand why mesothelioma patients do or do not seek workers compensation; b) shed light on barriers and challenges that individuals and their families face with regard to compensation claims; c) understand the role of the physician, as a key player in the compensation process, and the information they provide about occupational disease and workers compensation; and d) understand opportunities, resources or facilitators that can be used to improve information on awareness, eligibility, and application for compensation of occupational disease. Methods: Twenty-six individuals with mesothelioma and their family members participated in semi-structured interviews with a trained interviewer. Individuals and family members were recruited through cancer clinics, and through research posters distributed at asbestos related events and through asbestos- and worker-related networks. The interview collected information about the individual s medical history, work history and asbestos exposure; and experiences with issues relating to workers compensation, as well as basic socio-demographic information. A separate sample of 24 physicians, drawn from directories of physicians who would typically see patients with occupational disease (respirologists, medical oncologists, thoracic surgeons) participated in telephone interviews by a trained interviewer. Physicians were provided with a vignette and asked to comment on the work-relatedness of the patient s mesothelioma diagnosis and their role in the workers compensation claim process. The interview also asked physicians to respond to knowledge and attitude statements about occupational disease and workers compensation. The qualitative responses from the individual/family interviews were analyzed using the methods of framework analysis, 5

8 which involves a systematic process of sifting, charting and sorting material according to key issues and themes. Responses from the physician interviews to the vignette and knowledge questions were summarized according to consistent issues and themes. Results: The main themes to emerge from the qualitative interview data is that individuals with mesothelioma and their families rely heavily on physicians as trusted sources of information for both medical and compensation-related issues, that the process for filing a compensation claim is perceived as complicated/bureaucratic procedures (and uncertain) but that the physician can be key in initiating the process, and that individuals and their family members had a beneficial experience once they were in contact with the compensation system. Results from the physician interviews indicated that physicians were aware of asbestos and mesothelioma as an occupational exposure and a compensable disease. They also tended to agree with statements that they were unfamiliar with the workers compensation system, that helping individuals with mesothelioma seek compensation is time consuming, and that the compensation process is a barrier for their patients. Discussion: The findings indicate the need to increase awareness of the importance of the physicians role in recognizing occupational exposures and related diseases, and in facilitating contact with the workers compensation. In response, the investigators met with the UBC s Faculty of Medicine ehealth Office to explore for future work how modern communication technologies can be used to increase awareness among physicians and facilitate processes to put individuals and family members in contact with the workers compensation system. Key Words: Mesothelioma, workers compensation, qualitative research Introduction 6

9 Mesothelioma is a form of cancer that is largely attributable to occupational asbestos exposure (1). Although the industrial use of asbestos in Canada has been largely phased out, there can be a latency period of up to thirty years between exposure and onset of disease symptoms. As a result of historical exposure to asbestos in the workplace and the long latency period, Canadian mesothelioma cases have doubled over the past twenty years and are expected to peak between 2015 and 2019 (2). Despite the strong link between occupational exposure to asbestos and mesothelioma, previous research in British Columbia has shown that only 50% of individuals with mesothelioma have a compensation claim for their disease (3). This is largely as a result of workers with mesothelioma not seeking compensation (4). Studies of mesothelioma in other provinces in Canada, and other countries worldwide, indicate similarly low compensation rates (2, 6 8). Not filing a compensation claim for an occupational disease deprives the worker and their family from a range of services and supports not otherwise covered through the public medical or social safety net system in Canada. In British Columbia for example, workers compensation benefits for eligible workers include coverage of all related health and medical expenses including the cost of diagnostics, drugs, treatments, care (including palliative care), and equipment; payable to the worker, spouse, dependents or estate. Workers are also entitled to wage loss compensation if the worker was employed at the time of their work disability due to mesothelioma. For family members of eligible workers, compensation benefit include funeral expenses, grief counselling and, for surviving spouses /or dependents, monthly pensions and vocational assistance. It is important to note that in British Columbia, the majority of workers who apply for compensation are eligible and receive workers compensation benefits (30). In addition, from a broader societal perspective, low compensation rates result in medical costs being shifted from employers and workers compensation systems to provincial governments and to patients and their families (9,10). Finally, not filing a compensation claim undermines the utility of compensation data for occupational surveillance, that in turn may limit the recognition of the burden of disease as well as the recognition and prevention of future occupational exposures and disease (9). 7

10 To date, very little research has been done to investigate why individuals with mesothelioma do or do not choose to file a compensation claim. However, research on mesothelioma and other serious cancers provides insights into why individuals may choose not to apply for compensation, are unable to successfully file a claim, or simply are not aware that they are eligible to apply for workers compensation. Individuals may be hesitant to independently seek information about their disease or about compensation because physicians are seen as the central and trusted source of information for matters related to their disease (11 14). As such, if physicians do not provide information about compensation, individuals may not receive this information elsewhere. Additionally, the shock and stress of a terminal diagnosis such as mesothelioma affects individuals ability to absorb information, to retain information, and ultimately to pursue compensation (15 17). In these cases, family members may take a more active role in seeking and managing information relating to the disease (18). This report presents the findings of a study that investigated the reasons why individuals with mesothelioma do or do not choose to seek compensation, by conducting interviews with individuals with mesothelioma and their family members. In order to provide a fulsome description, the project also included telephone surveys of physicians about the recognition of mesothelioma as an occupationally related cancer and eligibility for compensation, as well as questions on knowledge and awareness of the compensation process. The research aims were a) investigate and understand why mesothelioma patients do or do not seek workers compensation; b) shed light on barriers and challenges that individuals and their families face with regard to compensation claims; c) understand the role of the physician, as a key player in the compensation process, and the information they provide about occupational disease and workers compensation; and d) understand opportunities, resources or facilitators that can be used to improve information on awareness, eligibility, and application for compensation of occupational disease. Methods Study Participants/Recruitment Methods Mesothelioma patients were identified by physicians working at five cancer clinics in British Columbia, Canada between July 2011 and October Patients and their 8

11 family members were provided with study and contact information by clinic physicians. Interested individuals were contacted by the researchers and invited to participate in the study. In order to increase the sample, the study and contact information was also distributed via mailing lists by labour unions and an asbestos disease advocacy group, as well as via recruitment posters on our research website, at cancer clinics and at an asbestos awareness event (Walk for Truth). Individuals and family members were excluded if their compensation experiences had occurred outside of Canada. A letter of invitation to participate in the study was sent to a physician sample using three sources of data. First, the research team identified physicians who work with mesothelioma patients via the BC Cancer Agency Clinics. Second, a publically available database was used to select physicians by specialty as most likely to treat patients with occupational disease in BC, including mesothelioma (respirologists, thoracic surgeons, and medical oncologists). Third, individuals with mesothelioma who participated in the study were asked if they wanted to identify their treating physicians for recruitment into the study. Interviews Individuals with mesothelioma and their family members participated in a semistructured interview conducted in person (with the exception of one family member interviewed by phone) by a trained interviewer (See Appendix I for the interview guide). The interview collected information about the individual s medical history, work history, asbestos exposure and socio-demographic information; the interview also included questions to probe individuals to help the investigators understand a) why mesothelioma patients do or do not seek workers compensation, b) barriers and challenges that individuals and their families face with regard to compensation claims and c) opportunities, resources or facilitators that can be used to improve information on awareness, eligibility, and application for compensation of occupational disease. Questions were informed by a similar research study and were pilot-tested with a family member of a deceased mesothelioma patient (19). Each interview lasted between 15 and 48 minutes, and was audiotaped and professionally transcribed. All participants were offered an honorarium for their participation in the study. 9

12 Physician interview questions (See Appendix I for the physician interview guide) were designed to understand the role of the physician in the compensation process, and the information they provide about occupational disease and workers compensation. Similar interview procedures have been used in other studies of asbestos-related disease (21), and the interview protocol was pilot tested with three physicians. Physicians participated in a brief telephone interview that presented a patient vignette (See Appendix I) describing an older man presenting with pleural mesothelioma who had a long work history as a pipefitter in a shipyard; one version of the case study included a smoking history while a second version did not. Physicians were asked whether they would consider his diagnosis to be related to his occupation, and probed whether physicians would recommend filing a workers compensation claim and if so, what role the physician would play in this process. The interview also asked Likert-style questions covering physicians knowledge of, and attitudes towards, occupational disease and workers compensation. In addition, socio-demographic and professional information was collected. Each interview lasted between 6 and 18 minutes, and was audiotaped and professionally transcribed. All participants were offered an honorarium for their participation in the study. Analysis of Interview Data Audiotapes of the interviews were professionally transcribed, and analyzed using the methods of framework analysis, which involves a systematic process of sifting, charting and sorting material according to key issues and themes (20). Themes were investigated with regards to reasons why individuals seek compensation, barriers/challenges to compensation and opportunities/resources/ facilitators for seeking compensation, as well as the physicians role in the compensation process and their knowledge/attitudes towards occupational disease an compensation. One author (ACH) was primarily responsible for in-depth analysis of the interview transcripts that resulted in a framework for coding the interview data. Additional coding by ACH and SM tested the acceptability and reliability of the coding framework. 10

13 The Behavioural Research Ethics Board at the University of British Columbia approved the study protocol (Certificate#H ). All participants in the study signed an informed consent form. Results Sample Characteristics and Recruitment Results Ten mesothelioma patients, 16 family members and 24 physicians completed the interview process and were included in the study. A description of participants is provided in Table 1. Table 1: Socio-demographic information about participants (individuals with mesothelioma, family members and physicians) included in interviews Participant type Individual with mesothelioma (n=10) Age (range) Mean 71 yrs, (52-85 yrs) Sex Education level Marital status Reported annual household income at time of survey 60% M 50% secondary 40% undergraduate 10% less than secondary 70% married 20% widow/widower 10% divorced Mean $52,750 (23, ,000) Participant type Family member (n=16) Age Sex Relationship to patient Mean 54 yrs 38% M 46% child (26-78 yrs) 54% spouse/partner Status of patient 85% living 15% deceased NA Participant type Physician (n=24) Age Sex Date of obtaining medical license Mean 48 yrs 63% M Mean 1997 (35-73 yrs) ( range) Specialization 50% respirology 38% medical oncology 12% thoracic surgery NA In terms of our recruitment strategy, almost all of the participants with mesothelioma or their family members were recruited third-party by physicians at the British Columbia Cancer Agency clinics. Only one participant was recruited by the researchers as a result of the advertisement sent to the list of the advocacy group. In terms of our recruitment strategy for physicians, 8 physicians were recruited via the list of physicians with the British Columbia Cancer Agency Clinics and 16 were recruited from the 11

14 physician directory with a specialty in respirology, medical oncology or thoracic surgery. No physicians were recruited to participate in the study via individuals with mesothelioma providing contact information. Compensation Status and Work History All 10 individuals with mesothelioma had a confirmed diagnosis by a physician. All were aware of the workers compensation system at the time of interview, ranging from participants who were receiving benefits (n=4), had submitted a claim/were awaiting a decision (n=1), or were in the process of completing a claim (n=4). Although all individuals with mesothelioma were residents of British Columbia at the time of interview, one spent their working life in Saskatchewan and as such dealt with that province s compensation system. All other participants were eligible for coverage as workers under the British Columbia workers compensation system. Individuals with mesothelioma represented in the study covered a wide range of occupations and possible asbestos exposure scenarios. Individuals with mesothelioma had worked in industries including pulp and paper, mining, construction, auto mechanics, oil refining, retail and industrial supply (where exposure occurred through handling either bulk asbestos or asbestos-containing products), and education (with exposure during school renovations). Participants expressed different levels of certainty as to the cause of their disease: while some pinpointed the occupational exposure with confidence, others suggested that their mesothelioma could have been due to a number of past exposure scenarios. Two participants could not link their disease to an occupational exposure but may have experienced environmental or para-occupational exposures. For example, one of these participants had a family history of asbestosrelated cancer. Study Aim #1 Understanding Why Individuals Do or Do Not Seek Compensation Analysis of interview transcripts revealed a common theme that individuals with mesothelioma and family members were not aware of the possibility of applying for compensation at the time of diagnosis, but were made aware by a physician. 12

15 Individuals with mesothelioma and family members expressed doubt regarding their eligibility for compensation for a number of reasons, including an inability to pinpoint the cause of their disease, and difficulty in documenting a detailed work history. Key for participants to seek compensation for mesothelioma was having support with filing a claim (see quotes, Box A). Box A: Quotes, beliefs regarding eligibility for compensation Participant 8 (patient): I wouldn t even have dreamed of anything like [compensation]. Participant 2 (patient): I really didn t even think about [compensation] because there was that really didn t come up until I was handed the papers to fill out. Because of I was told when my doctor gave me the papers, I guess he said that it s a workplace disease, right. Participant 9 (family member): Well, I don t know [if patient is eligible for compensation]. If it happened somewhere on the job, yeah, but I don t how do you know? Participant 16 (family member): We thought we would have to have some kind of detailed records. We don t have any records from 20 years ago. So we thought it would be hard to trace the work history back to exact dates and things but yeah. But I guess they don t need that sort of that level of detail. Participant 26 (family member): And I think it was belief that he wouldn t qualify, too, and that may have stopped him from applying as well. Because he s, like, I don t know, how can I prove it? I have no idea where-- or when it happened. So I think that was his big thing, too, so that he didn t think he-- that they would-- he would be eligible for that reason so-- yeah. 13

16 Study Aim #2 Barriers and Facilitators for Applying for Compensation Individuals and their family members require support in the form of information, advice, and assistance because they are often not aware of their potential eligibility for compensation, and even after they become aware, may face challenges with the application process. Another deterrent to filing a claim was the overwhelming nature of the mesothelioma diagnosis, where patients focused on coping with a terminal disease, learning more about treatment options, or were simply too ill to dedicate energy towards completing a claim. Loyalty, and an unwillingness to punish a former employer, was also a deterrent for some patients (see quotes, Box B). Box B: Barriers to Seeking Compensation Participant 3 (family member): I don t remember [compensation] was ever brought up. Our main concern at that point was treatment. Participant 10 (family member): I mean, [compensation] was the furthest thing it just didn t even I mean, how are we going to cope with the next moment, was basic how are we going to tell our sons, right? And then how are we going to go down and tell his mother? My God. No, no, that was never even occurred to us, never, ever occurred to us. Participant 13 (patient): Well, I don t know, I feel a little guilty if it [asbestos exposure] was only for 10 years of my working life. Participant 14 (family member): He s reluctant to get involved in that aspect of it. He had an incredible amount of dedication to [his employer] and he didn t want this to damage their reputation or anything. And I said it wasn t their fault and it wasn t his fault. It s just the system; nobody knew. And so he has to and he has to now look after himself and his family and go in that direction. So he bought into that A common theme among individuals with mesothelioma was that encouragement to apply for compensation and/or assistance in completing the paperwork associated with a claim was important. Individuals admitted that they probably would not have pursued compensation without the urging or insistence of their support network. Physicians were most commonly mentioned as the key support person who made individuals and family members aware of compensation and encouraged them to apply, and were generally praised as being trustworthy and knowledgeable sources of information (see quotes in Box C). The individuals whose physician made contact with the compensation system by filing a Physician s Report (if they suspect a worker may 14

17 have an occupational disease) experienced a relatively seamless or positive experience with compensation (see quotes in Box C), since they were immediately referred to the compensation system s special claims officer, who was able to assist them with filing a claim and answering questions (in BC s compensation system, a special claims officer deals with all mesothelioma cases in the province). Box C: Facilitators for Seeking Compensation Physicians Participant 2 (patient): So at this point I m kind of relying on [my oncologist]. He s supposed to be the specialist. And buffer everything else with what he has to say. Participant 2 (patient): My doctor just gave me the forms and told me to fill them out. He didn t ask me if I wanted to. Participant 8 (patient): In fact they suggested [applying for compensation], all the way from my GP to the specialists. Participant 17 (patient): [My oncologist] said automatically you ll be getting a letter eventually from Workers Compensation. Participant 9 (family member): [The medical oncologist] did mention something about work. He said something about you got to fill out some forms and stuff about work. That s about it. Participant 16 (family member): I guess [the medical oncologist] started the process and we got a call from WorkSafeBC out of the blue. And the person [special claims officer] came and filled out the forms with us, yeah. Participant 04 (patient): [My medical oncologist] says I should apply. And to be honest with you, I never actually did anything. Next thing I knew I got a phone call from compensation board. So as far as I know it was [the physician] that did the did that and set it in motion. For those individuals with mesothelioma whose physician did not initiate contact with the compensation system on their behalf, family members were key in both motivating the individual and helping them to complete the claim forms. Another common theme across participants was that the compensation system s special claims officer also played a key support role for those participants who had contact with the compensation system, and was uniformly praised by these participants for specialized knowledge and dedication to patients (see quotes, box D). Individuals and family members described the claims process (especially the time between diagnosis and first contact with the workers compensation system) as being complex, confusing, or 15

18 arduous; and having dedicated assistance and support with filing a compensation claim was described as being very important. Box D: Facilitators for Seeking Compensation Support Network Family Members Participant 01 (patient): If I hadn t had [my daughters] with me, it would never come it would never have come up, this meeting [with the compensation system]. Never would have thought about it, cause I didn t understand it. Still don t understand it. Participant 08 (patient): Everybody my family kept pressuring me. Well, all they can do is say no. At least you ve tried, you know. Participant 26 (family member): I mean, he was interested but he doesn t have a computer. He-- it would just be taking the time for him to-- and I think that was a little daunting in itself cause-- like, he keeps saying, I m an 85-year-old man. I, you know, I don t know about these things. So my sister [ ] sort of helped him out in that. WorkSafeBC Participant 10 (family member): [Special claims officer] knows more about mesothelioma I think than a lot of doctors do. I mean, [individual with mesothelioma] and I are really well educated, in-tune people. But when this comes at you, there s stuff you don t hear, and that s why it s always important for two people. Maybe [patient s GP] had contacted WorkSafe. I cannot say that I can ever remember doing that. But it doesn t matter, because on October the 18 th [the special claims officer], our absolute angel from WorkSafeBC, showed up at the bedside. Participant 16 (family member): Well, if we had known that the process was not did not require so much detail, then we might have done it ourselves. But I think it was good that someone [from WorkSafeBC] came and filled it out with us. Participant 19 (patient): And what came out of this man [special claims officer], I learnt more from this man than any medical professional. Another theme to emerge across the interviews was that individuals with mesothelioma were convinced to apply by family members or by the special claims officer because of the financial benefits of compensation for themselves and/or their families (see quotes, Box E). Box E: Facilitators for Seeking Compensation Financial Support Participant 6 (patient): Well, we re on pension. Maybe a little bit of extra money would come in handy. Participant 19 (patient): [The special claims officer] said, When your day is up, WorkSafe will continue to pay your wife in full till the day she dies. And I just about what? I felt like reaching over and giving him a hug. 16

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