Social Science & Medicine 99 (2013) 35e41

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Stakeholder perceptions of thoracic rapid tissue donation: An exploratory study Jessica McIntyre a, Christie Pratt b, Rebecca D. Pentz c, Eric B. Haura b, d, Gwendolyn P. Quinn a, d, *, FORWARD1 a

Cancer Prevention and Control, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA Thoracic Oncology Program, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA Emory University School of Medicine, 201 Dowman Drive, Atlanta, GA 30322, USA d College of Medicine, Department of Oncologic Science, University of South Florida, 12901 Bruce B. Downs Boulevard, MDC 44, Tampa, FL 33612, USA b c

a r t i c l e i n f o

a b s t r a c t

Article history: Available online 6 September 2013

Rapid autopsy or rapid tissue donation (RTD) is a novel method of tissue procurement in which ‘fresh’ tissue is collected within 2e6 h following the death of a patient. While the use of RTD offers many opportunities to develop new therapies for lung cancer patients, it raises ethical concerns. The purpose of this study was to examine knowledge, perceptions and ethical concerns about recruiting patients for an RTD program. To achieve research goals, we conducted six focus groups, each containing 5e10 participants (N ¼ 38). Participants were cancer patients (n ¼ 17) their caregivers (n ¼ 6), physicians (n ¼ 6) and clinic staff (n ¼ 9) from the Thoracic Oncology Program at Moffitt Cancer Center, in Tampa, Florida, USA. All focus groups were audio-recorded and conducted using a semi-structured focus group guide. The transcripts were analyzed using hand-coding methods. Data were coded independently by at least two researchers, and an inter-rater reliability rate of 90% was achieved. Knowledge about RTD was low among all groups, with physicians having slightly higher knowledge; all groups agreed that RTD offered major benefits to cancer research; physicians and clinic staff were mainly concerned about making a patient feel uncomfortable and reducing hope, while, patients and family members were more concerned about logistics and how the family would be affected during tissue retrieval. All groups agreed the physician was the appropriate person to begin a discussion about RTD and that recruitment should be individualized. All groups reported that physician training is necessary, as well as an awareness campaign for patients and families to be more receptive about RTD. The results of this study suggested more education is needed for all stakeholders to learn about RTD prior to the initiation of a research program. Our approach of querying all stakeholders provides a firm foundation for future training modules regarding RTD programs in lung cancer. Ó 2013 Elsevier Ltd. All rights reserved.

Keywords: USA Survey Health care providers Tissue donation Oncology Rapid tissue donation Rapid autopsy

Introduction Over 220,160 new cases of lung cancer are diagnosed each year with a 5 year survival rate of 15% that has remained stagnant for several decades (American Cancer Society, 2012). While significant advances have been made regarding new targeted therapeutics, more research is warranted to understand tumor biology in the

* Corresponding author. 12902 Magnolia Drive, MRC CANCONT, Tampa, FL 33612, USA. Fax: þ1 813 449 8019. E-mail address: Gwen.quinn@moffitt.org (G.P. Quinn). 1 Florida Oncology Research Working Alliance on Remains Donation (FORWARD). Members: Schabath M., Leon M., Muñoz-Antonia T., Gonzalez L., Guerra L., Sehovic I., Halburian A. 0277-9536/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.socscimed.2013.08.035

terminal patient and to impact survival. Many of these recent advances have occurred through research utilizing archival patient tissue from diagnosed biopsies or surgical resections. Rapid autopsy or rapid tissue donation (RTD) is a novel method of tissue procurement in which “fresh” tissue is collected within 2e6 h following the death of a patient (Lindell, Erlen, & Kaminski, 2006). The ability to obtain fresh samples from patients with advanced and drug resistant disease provides tremendous research possibilities. There are few institutions in the United States with established Rapid Autopsy Programs; however, among those that exist, significant disease specifics advances have stemmed from the science conducted on obtained samples (Embuscado et al., 2005; Hulette et al., 1997; Rubin et al., 2000; Shah et al., 2004). While studies that address perceptions about autopsies to determine

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cause of death are prevalent, patient and clinical staff perceptions of RTD for cancer research and enrolling in an RTD program have not been reported. The use of RTD offers many opportunities to increase the understanding of biological processes involved in cancer and the development of new therapies for lung cancer patients; however, it is fraught with ethical concerns, such as diminishing the patients’ and their families’ hope, being disrespectful of a dead body, and causing additional stress to families in a such delicate moment; these issues should be considered for the patients, their families, and practitioners. While there are no financial costs incurred by the families whose loved one chose to donate, there may be emotional costs. Since the organs, tissue, and metastasis need to be retrieved 2e6 h after death, the family will have less time to spend with their deceased loved one. Also, the body will not be returned to the funeral home for an additional 24 h and this may disrupt burial plans or religious ceremonies. Organ donation and transplantation literature can provide context and a framework for understanding how donation discussions are initiated and how patients and families make decisions. Bioethics literature has established that the initiations of end of life and donation communications are difficult for practitioners and patients (Galushko, Romotzky, & Voltz, 2012; Horne, Seymour, & Payne, 2012). Communication difficulties are related to the sensitive nature of the subject of death, potential loss of hope of a terminal patient and avoidance of establishing end of life wishes. Discussing decisions and wishes for what will occur after death with a patient and family need to be approached with both sensitivity and an understanding of how ethnic, cultural and religious affiliations can impact and frame decisions. With RTD, there are additional confounding variables to these post-mortem discussions such as the need to retrieve the organs and tissue within a limited window of time. As in the case of organ donation programs, exploring the most appropriate timing and approach for consent are critical. Organ donation literature suggests there is some variability regarding which clinical staff should have the role of approaching family members to gain consent. The type of health care provider (hereafter, called simply provider) who approaches families about autopsy and donation has been shown to impact the consent outcomes (Kamal, Forsyth, & Jones, 1997). For example, in donation after cardiac death (DCD) donation programs, it has been documented that providers play a critical role in facilitating or obstructing donation (McVearry-Kelso, Lynkholm, Coyne, & Smith, 2007). Similar to RTD, donation after death carries ethical concerns (DuBois & Anderson, 2006). Donation after death is fraught with uncertainties and controversy about the premise that donors are indeed dead before organs are procured. A study conducted by D’Alessandro, Peltier, and Phelps (2008) to identify potential barriers to increasing donation after death protocols found that providers’ lack of knowledge and ethical concerns were the two biggest barriers to increasing consent. In addition, the same study found that providers’ personal feelings about end-of-life issues, organ donation and donation after death influenced their comfort level in making the donation request. Providers giving direct clinical care must ensure the patient and family understand their primary goal is to provide the best treatment and care possible, and that they continue to be focused on the patient’s survival and quality of life. Thus, it is important to explore patient and family preferences for discussions and recruitment, so that stakeholders receive information in the most appropriate format, and at the most appropriate time, during the disease trajectory. Exploring the knowledge, attitudes and perceptions of stakeholder barriers regarding an RTD program is critical for successful implementation. In this study, we conducted formative research with physicians,

clinical staff, patients and family members at a single institution to explore the knowledge, perceptions and ethical concerns about recruiting for an RTD program in lung cancer. Methods Design and setting In preparation for the development of an RTD program at Moffitt Cancer Center in Tampa, Florida, USA we conducted focus groups to explore the knowledge, perceptions, and potential barriers of recruiting patients for RTD. To achieve the formative research goals, researchers conducted six focus groups, each containing 5e10 participants (N ¼ 38). Participants were cancer patients/survivors, (n ¼ 17) their caregivers (n ¼ 6), physicians (n ¼ 6) and clinic staff (n ¼ 9; 4 nurses, 3 clinic administrators, and 2 clinical trials coordinators) from the Thoracic Oncology Program at Moffitt Cancer Center. All focus groups were audio-recorded and conducted using a semi-structured focus group guide (Table 1). Participants in all focus groups were asked to provide opinions about RTD and the following: a) ethical and cultural belief systems related to end-oflife issues; b) perceived barriers to enrolling for RTD; c) perceived benefits of enrolling for RTD; and d) how best to approach patients to enroll for RTD. Participants were recruited after the project received institutional review board approval from the University of

Table 1 Focus group guides. Patient/family Guide 1. What do you think of when you hear the term rapid tissue donation (RTD)? 2. Have you heard of rapid tissue donation before this focus group? 3. Do you think Moffitt should begin an RTD program? 4. What do you perceive the benefits are of donating tissue after death? 5. What do you perceive as negative aspects to this? (probe: or worries) 6. What do you think would happen to the tissue collected? 7. Do you have any ethical or religious concerns about RTD? a. Do you have any concerns related to your culture? 8. How would you like to be approached about enrolling in an RTD program at the hospital you are receiving treatment in? For examplea. Who would you like to approach you e your regular cancer doctor, a nurse, a specialist who knows most about RTD? (probe: do you feel this discussion would reduce hope) b. How would you like your family to be involved? c. What would you want us to do if you want to join an RTD program and your family doesn’t want you to? d. At what point in disease progression is it most appropriate to discuss RTD? 9. What are some things that would help make your decision? 10. Is it appropriate to promote this to Moffitt patients with the idea that there are other ways to contribute to Moffitt besides monetary donations? 11. Of all the things we talked about, what to you is the most important thing that was said? Health Care Providers Guide 1. What is your existing knowledge of rapid tissue donation (RTD)? 2. What do you perceive as benefits of RTD? 3. What do you perceive as negative aspects of RTD? 4. When should patients be approached about RTD? 5. What verbal “cues” should you look for to gage patient interest in RTD? 6. Would you feel comfortable discussing RTD with a patient? 7. What do you think your role should be regarding a potential RTD program? 8. Do you have any ethical or religious concerns about patients donating tissue? 9. Do you have any ethical or religious concerns about your role in an RTD program? 10. What are some ways you would prefer to have training on ethical guidelines, methods of recruitment, and patient-reported barriers? 11. Of all the things we talked about, what to you is the most important thing that was said?

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South Florida and each participant provided written informed consent prior to participation. The focus groups were led by trained moderators who were part of the research team. Each group lasted approximately 60 min (Table 2). Patient/family focus groups Eligible patients and family members were: a) a Thoracic Oncology Program patient or primary caregiver of a current or former Thoracic Oncology Program patient at Moffitt Cancer Center; b) > 18 years old; c) capable of speaking and reading standard English; d) willing to participate and provide informed consent. Patients and caregivers were recruited via a post card mailed to patients who had been seen in the Thoracic Oncology clinic at Moffitt Cancer Center within the past 2 years, identified through the clinical data systems, and who had registered to receive information about educational events and promotions in lung cancer. This approach automatically removed patients who had selected “do not contact” and those who were deceased. The post card briefly described the study and included a toll-free number for patients and caregivers to call if they were interested in participating in the study. The study coordinator conducted a short pre-screening questionnaire to ensure eligibility of all potential participants who called the study number. Those participants who met eligibility requirements and wished to participate were mailed a consent form and instructed to sign it and return it in the self-addressed envelope. After receiving the signed consent form, the study coordinator contacted the participants and offered two times and dates to join one of the focus groups. On the day of the focus group, the study coordinator reviewed the informed consent with the participants. To minimize burden and maximize participation for the patient/ family group, the study team conducted the focus groups via telephone. A telephone focus group is a moderated group discussion similar to a conference call. Although traditional focus groups involve face-to-face interactions, telephone focus groups are becoming more common, especially among health researchers (Cooper, Jorgensen, & Merritt, 2003). Calls can be less threatening and less intimidating because participants cannot see each other. This method also eliminates travel, has higher acceptance and participation rates, and is more flexible than in-person groups (Krueger & Casey, 1994). Physicians/clinical staff focus groups Eligible physicians and clinical staff were: a) Moffitt physician or clinic staff in the Thoracic Oncology Program and b) willing to

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participate and provide informed consent. Physicians and clinic staff were recruited through Moffitt Cancer Center and identified by Moffitt’s Lung SPORE director and Thoracic Program Chair. An email was sent to nominated employees to request participation in a faceto-face focus group. All eligible individuals who gave informed consent were assigned to a focus group. The focus groups were held in a private room at Moffitt Cancer Center in Tampa, Florida. Data analysis Focus groups were audio-recorded, and verbatim transcripts were created. The transcripts were analyzed using hand-coding methods. The content was first analyzed by placing each response in broad categories using the constant comparative method (Glaser & Strauss, 1967). A codebook was developed to define each of the themes and to classify and organize data. Key themes and subtopics were selected from the entire transcription based on our study goals and the focus group guide questions. Data were coded independently by at least two researchers, and an inter-rater reliability rate of 90% was achieved. Results Patient and family The recruitment post card was mailed to approximately 200 patient homes. These patients were selected to receive a post card because they had previously agreed to participate in educational events and promotions through the Thoracic Department. From these mailings, 45 individuals (29 patients and 16 caregivers) called the study hot-line for more information about the study. Twentythree individuals (17 patients and 6 caregivers) agreed to participate. Reasons for not participating included: not feeling comfortable discussing the topic; changing their mind after realizing RTD happens after death; and feeling upset upon hearing the word “autopsy”. Knowledge Participants were asked if they had ever heard of RTD or warm autopsy prior to this project. The majority of physicians had heard of RTD; some of them knew the definition of the term, however, the majority did not know details on specific procedures for RTD or if any institutions had an established program. One physician commented, “It was 2 weeks ago a lady from Emory came and talked about it [RTD]. But [I know] nothing else. I mean, I’m not even sure

Table 2 Summary of key themes by group (n ¼ 38).

Knowledge of RTD Benefits Concerns

Patients/survivors (n ¼ 17)

Family (n ¼ 6)

Physicians (n ¼ 6)

Clinic staff (n ¼ 9)

Never heard of RTD Don’t know Advancement of science Giving back Family’s role during process Loss of hope

Never heard of RTD Don’t know Advancement of science

Some know of RTD Don’t know details Advancement of science Giving back Making the patient feel uncomfortable Reducing hope

A few know of RTD Don’t know details Advancement of science May help family Making the patient feel uncomfortable

Physician

Physician

No good timing

When there are more treatment options

Individualized

Through initial questionnaire, general campaign Approach only interested patients Sensitive communication Highlight positives

Physician

Loss of hope Logistics, short time frame after death Physician

Preferred recruitment spokesperson Timing

No good timing

Recruitment approach

Individualized

Most-early in the process Some- during Hospice Discussion with physician

Health care provider training

General campaign Sensitive communication

General campaign Sensitive communication

General campaign Sensitive communication Specific details

Reducing hope

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there is any other program in the country that is doing that [RTD]. I assume they are because she talked about it.” Knowledge about RTD was low among clinical staff. Only three people acknowledged they had heard the term before the focus group session. The majority of participants in the patient and family group said they had no knowledge about RTD prior to this project. A patient explained, “I originally thought it meant that at the time of diagnosis you donated tissue and blood or whatever. I didn’t realize it was at the time of death.” and a family member simply said, “no, never heard of it.” Benefits All groups were asked what they perceived to be the benefits of donating tissue after death and the majority agreed that the biggest benefit was the advancement of science and opportunities for research. They all believed the tissue would be very valuable in terms of understanding the progression of lung cancer and finding new therapies. A physician stated. “. it’s huge [the benefit], I think the number of autopsies that are done nowadays are much lower then they were in the past. So getting tissue from patients with metastatic cancers, particularly people who have aggressive and progressive cancers can be very valuable.” One clinic staff member said “.we always struggle with getting enough adequate tissue and a lot of that is while the patient is still alive.I think we are going to find a lot more information than what we currently have to benefit those that are living with the disease”; a patient added, “I feel that it would help them find out a little bit more about cancer if they have a larger tissue sample” and a family member explained, “I think a benefit exists because at the end, at death, a patient has had significant treatment so to compare tumor cells taken earlier and then make those assessments.” Some physicians and patients expressed that another benefit could be that some patients are eager to help and give back and RTD could offer an opportunity for these patients. One physician said, “There are patients that tell you they want to donate their body to science.” A clinic staff member explained, “I don’t know if we can quantify how much people express altruism but they will do things for society or maybe their family generations away”, and a patient expressed, “you might have people, once they recognize that there isn’t a solution, actually seek this out as a last gift, so the burden would be off you all or off the physician.” At least one third of the clinic staff mentioned RTD could help the patients’ families in the healing process by knowing their loved one will help others. One clinic staff member said, “. I also see maybe a benefit as to the patients’ families, you know giving them an opportunity to do something that will help others in another way. is like a positive in a negative situation.” Concerns The majority of physicians and clinical staff expressed concerns about making the patient feel uncomfortable and reducing hope. A physician explained, “.they [patients] are coming here for, not a solution, but hope.and now you are exposing them to something that is too ethereal, too philosophical, that may not only confuse them but upset them”, and a clinic staff member reported, “I would be concerned approaching them [patients]; they are here for treatment, hope, survival, a cure and here we are talking about what to do with their body afterwards.” Conversely, the majority of patients were concerned about their families and how the logistics of tissue procurement would affect them during a time of grief. Most patients also felt that their family should have the ability to revoke consent if they felt the process was too complicated or hard for them to follow. One patient said,

“How would that [RTD procedure] affect my family as far as the timeline and when you have to take the tissue from my body? That’s my only concern”, and another patient asked, “.Will that turn into a nightmare for my family trying to get my body back.what if you get what you need and then my poor family is left chasing after my body?” A smaller group of patients also mentioned concerns related to loss of hope if the discussion is not handled with sensitivity, one patient explained, “Tissue donation seems like a finality.and every cancer patient, no matter what stage they are in, live with that hope that some miracle, some doctor, someone might find an answer”. Another patient added, “It has to be approached in a very delicate way because you’re asking for a tissue donation after death, it’s kind of like indicating that you might not survive this.” The majority of family members felt that the limited time frame from death to retrieval was going to be an issue that might cause conflict within the family. A few participants also mentioned that this discussion could bring loss of hope for the patient. One family member said, “Why talk about donating tissue if they’ve just been diagnosed with cancer? Excuse me, I don’t want to talk about donating organs or tissue because we’re going to fight this.” Recruitment spokesperson The majority of participants in all groups agreed the physician should be the first person to discuss RTD with a patient. In the patient group a small number of participants also suggested having a social worker or mental health counselor present during the discussion. A physician explained, “The success rate would be much higher if it’s the physician that the patient has built a relationship with than if you have some random person they’ve never seen before come in to talk to them or their family about this.” One clinic staff member said, “I think the doctor should present it and then if they have questions, I can follow up like we do with everything else.” A family member simply stated, “The oncologist. he’s developing not only a professional relationship but a personal relationship with a patient whose life he’s trying to save. Almost anyone else is a stranger”; and one patient explained, “This is a terrible burden to put on the physicians but that’s where your personal connection is and this is a very personal decision.” Timing Participants were asked at what point in disease progression they felt was most appropriate timing to discuss RTD. All groups agreed that the first appointment is not a good time to discuss RTD. One patient commented, “I just couldn’t see this at the point of diagnosis. you’re getting ready for battle”, another patient explained, “The discussion could be terrifying for newly diagnosed patients but also for those who progress.” The majority of participants in the physician and patient groups felt that there was no good timing for this discussion; rather most of them suggested timing may have to be evaluated by the physician for each patient because timing may be different for each individual. One physician said, “Maybe timing is not the issue. Maybe personality is the issue.” Another physician agreed, “I think a priori you can’t say it’s good now or then, the physician kind of has to take a snapshot, is this a good time [for this patient] or is this not a good time.” One patient explained, “The worst thing is that once again, you get to confront as a patient the fact that you’re terminal, that’s a hard thing to swallow, I don’t care who you are, how sick you are, it’s just hard. And when you bring up this topic, once again it’s in your face and now you get to deal with it.” The majority in the clinic staff group believed the best timing to present RTD to a patient is when there are no more treatment

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options. One clinic staff member said, “at that point you’ve exhausted all options, and you are saying I cannot help you today but maybe you can help someone down the road by looking at this study.” The family member group agreed that all patients should receive information about the program during their first visit and while they can still make decisions; however a smaller number of respondents felt the discussion should take place only when a patient is placed in hospice care. Recruitment approach All participants were asked how patients should be approached about enrolling for RTD and the majority of participants in the physician and patient groups mentioned that the best approach would be to use an individualized method in which the physician evaluates each case and decides who is a good candidate for RTD. One physician stated, “I think there are some people who are never comfortable. Who are even to the last day wanting chemo and saying there is going to be a miracle.” A patient explained, “I think oncologists can try to determine in advance whether a particular patient would be agreeable to discussing this.” Another patient added, “.if the physician is a personable one and a sensitive one, then they are probably in the best position to read you when you might be receptive or not receptive.” Clinical staff felt that the best approach would be to add information about RTD to the initial patient questionnaire and give all patients an option to select if they are interested in receiving additional information. Only patients who initially request more information should be approached for recruitment. One clinic staff member explained, “.then you can say to a patient, when you first came in you indicated that you might be interested, so it does not sound like you are being an organ scouter but saying I’m offering the information you asked for.” In the family members group, the majority of participants felt that the physicians should have a discussion about RTD with the patient during the early stages of diagnosis. One family member said, “I think that if you wait until the person goes to hospice, you may have someone who can no longer fend and speak for themselves”. A small number of participants from all groups also suggested that the recruitment approach should be more general and that every patient should get information about the program through flyers and brochures. One physician declared, “I like the idea of taking away that charged aspect of it by saying this is something we offer everyone.” A patient explained, “I think it needs to be on a checklist of options to consider along the road as you’re progressing through treatment. Just know there’s something called rapid tissue donation and you could make a contribution that way.” Another patient added, “That way it does not mean anything as far as how the patient’s treatment is going. It just means that this is a program Moffitt and other facilities are making available.” Physician/staff training All groups agreed that training for physicians and clinic staff on how to approach patients about RTD is necessary. Physicians expressed they would like a script on how to talk to the patients and all the specific details on the procedures/logistics. Clinical staff would like guidance on how to discuss the sensitive topic and highlight benefits. One physician stated, “I would have no problem approaching the patients, but definitely somebody would have to give me some talking points because you have only one opportunity.you have to say exactly the right words.” Patients and family members felt that physicians and consenters need to have specific training to deal with sensitive communication. One patient explained, “I think the doctors need to have some training, perhaps, in learning how to

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deal with each person individually and definitely not make it a blanket thing that everybody at a certain point, you know, gets the talk.” Discussion Our results suggest knowledge was low among all stakeholders and this may present a problem for recruitment efforts. Willis and Draper examined organ donation consenting in the palliative care setting and found lack of knowledge was a barrier to enrollment among cancer patients. They concluded the lack of information available to patients and family members impeded autonomous decision making (Willis & Draper, 2012). Our study also revealed several perceived benefits of a rapid tissue donation program. The motivating factors in this study are similar to the factors identified in organ donation programs including to advance research, to find a cure for the disease, to help others, and out of gratitude for the institution (Stevens, 1998). In addition, a study by Pentz et al. found that families of patients who agreed to postmortem research expressed feeling of gratitude and altruism (Pentz, Flamm, Pasqualini, Logothetis, & Arap, 2003). Providers and family members in our study were mainly concerned about causing distress to patients by discussing RTD. This is consistent with Pentz et al. who recognized that participating in RTD programs may generate feelings of distress, fear, anxiety and objection for health care professionals as well as patients (Pentz et al., 2005). However, it is interesting to note that patients were more concerned about how RTD would affect their family, than how the discussion would affect them personally. There has been a great deal of literature focusing on the influential role that families play in procurement programs. Several studies have indicated that approaching and consenting family members for organ donation does not have a negative impact on bereavement (Cleiren & Van Zoelen, 2002; Merchant et al., 2008; Stevens, 1998; Stouder, Schmid, Ross, Ross, & Stocks, 2009; Willis & Draper, 2012). Based upon the role they play in patient decision-making and their role post-mortem, it is important to engage family members in the consenting process. In addition, Wilkinson states that medical practice as it stands today gives families the veto on the use of bodies, even after a patient has consented to donate (Wilkinson, 2005). The most cited reason for giving the family the final decision authority is to avoid distress at a difficult time. The majority of patients in our study agreed that family members should have these privileges. Focus group results indicate that all stakeholders agree that RTD discussions should be initiated by the treating physician based upon an established rapport and trust. Institutions with established RTD programs reported that the decision to participate is based upon a strong patientephysician relationship and on the clinical assessment of the patient’s emotional state (Embuscado et al., 2005). In addition, patients and physicians in our sample agreed that the recruitment approach should be individualized and this is consistent with a study by Thombs, Borthwick, Hungerford, and Cree (2005), in which the authors sought to better understand patient recruitment in organ donation programs. They noted that it was important to approach only patients who were coping well with their diagnosis and treatment; this limits stress and anxiety. All stakeholders agreed that training for health care providers is warranted. Recent research indicates that the skills for physicians and nurses to initiate and conduct effective end-of-life communication varies widely and can ultimately affect decision-making (Williams et al., 2003). It is imperative that physicians and consenting team members are trained to utilize ethically sensitive and culturally appropriate strategies throughout the recruitment process. Our approach of querying all stakeholders provides a firm foundation for future training modules.

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Recommendations based on our findings are as follows: Do use the word “donation” Do approach patients who have expressed interest in participating in research studies and are coping well with their diagnosis. Do engage family members in the consenting process. Do develop educational materials about RTD (e.g., brochures, flyers) Do give family members the final decision and authority to revoke consent. Avoid the word “autopsy” Avoid approaching every patient; instead wait for cues. Avoid discussions about RTD during initial appointments. Avoid having other staff initiate discussions about RTD with a patient, instead it should be the treating physician who initiates this discussion. A verbatim script may be necessary for physician comfort level and to ensure requests are uniform and consistent (this is currently under development for physicians at Moffitt Cancer Center).

initiation of a research program. Furthermore, providers participating in such programs need trainings on ethics and preferences for recruitment to minimize patient and family burden. Our study provides important preliminary information about knowledge, attitudes and perceptions of barriers from all stakeholders regarding RTD programs in lung cancer where additional research and education may be warranted. Acknowledgments This work was supported, in whole or in part, by National Cancer Institute SPORE Grant P50CA119997. The authors have no conflicts of interest to disclose. The authors of this paper are members of the Florida Oncology Research Working Alliance on Remains Donation (FORWARD): McIntyre J., Pratt C., Pentz R.D, Haura E.B., Quinn G.P., Schabath M., Leon M., Muñoz-Antonia T., Gonzalez L., Guerra L., Sehovic I., Halburian A.

Limitations

References

While this study represents an important first step in understanding knowledge, attitudes and perceptions of barriers from all stakeholders regarding RTD programs in lung cancer, there are certain limitations that must be considered. Our sample was recruited from a single tertiary cancer care center and thus may not be representative of patients, family members and providers from other institutions. In addition, demographic data were not collected during the focus groups. Thus, due to the fact the patients were receiving care at a National Institute of Health (NIH) designated cancer center and the unknown specific demographics of our respondents, the findings from this study may not be generalizable or representative of patients, family members and providers from other institutions. However, because RTD programs are rather rare, there is no reason to believe the knowledge of RTD programs displayed here will differ from other institutions. Moreover, there is no reason to believe that the attitudes of our diverse stakeholders at Moffitt would differ from other institutions as well. In addition, focus groups with providers were conducted in-person and focus groups with patients and family members were conducted over the telephone. In future studies, focus group modalities should be kept consistent. Though not necessarily a limitation, there are aspects to telephone-conducted focus groups that differ from in-person groups. Given that our sample included lung cancer patients, the study team concluded that telephone focus groups would provide patients in varying cancer stages the opportunity to participate from the comfort of their home. This method also eliminates travel, has higher acceptance and participation rates, and is more flexible than in-person groups (Krueger & Casey, 1994). Some disadvantages of the telephone focus group are the elimination of nonverbal cues such as facial expression, eye contact, and physical appearance (Hurworth, 2004; Ross, Stroud, Rose, & Jorgensen, 2006). However, it has been reported that this does not have a significant effect on the outcome of the group tasks such as group discussions, information exchange, and the asking of questions (Jeffrey, 1998). These outcomes are consistent with our study interactions as participants did ask questions, and respond to comments of other participants and not just the interview guide. This suggests that telephone focus groups are effective at collecting valuable information on knowledge, perceptions, and potential barriers to RTD.

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Conclusions The results of this study suggested more awareness and education is needed for all stakeholders to learn about RTD prior to the

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