- Email: [email protected]
Grief and loss for patients before and after heart transplant
Heart & Lung xxx (2016) 1e6
Contents lists available at ScienceDirect
Heart & Lung journal homepage: www.heartandlung.org
Grief and loss for patients before and after heart transplant Jennifer Poole, MSW, PhD a, *, Jennifer Ward, BSW a, Enza DeLuca, MN b, Margrit Shildrick, PhD c, Susan Abbey, MD d, Oliver Mauthner, MN, PhD e, Heather Ross, MD b a
School of Social Work, Faculty of Community Services, Ryerson University, 350 Victoria Street, Toronto, Ontario M5B 2K3, Canada Division of Cardiology and Transplant, University Health Network, 585 University Avenue, PMB 11-137, Toronto, Ontario M5G 2N2, Canada c Tema Genus, Linkoping University, Linkoping 58183, Sweden d Department of Psychiatry, University Health Network, 585 University Avenue, PMB 11-100D, Toronto, Ontario M5G 2N2, Canada e Institute of Nursing Science, Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 15 July 2015 Received in revised form 14 January 2016 Accepted 16 January 2016 Available online xxx
Objectives: The purpose of the study was to examine the loss and grief experiences of patients waiting for and living with new hearts. Background: There is much scholarship on loss and grief. Less attention has been paid to these issues in clinical transplantation, and even less on the patient experience. Methods: Part of a qualitative inquiry oriented to the work of Merleau-Ponty, a secondary analysis was carried out on audiovisual data from interviews with thirty participants. Results: Patients experience loss and three forms of grief. Pre-transplant patients waiting for transplant experience loss and anticipatory grief related to their own death and the future death of their donor. Transplanted patients experience long-lasting complicated grief with respect to the donor and disenfranchised grief which may not be sanctioned. Conclusions: Loss as well as anticipatory, complicated and disenfranchised grief may have been inadvertently disregarded or downplayed. More research and attention is needed. Ó 2016 Elsevier Inc. All rights reserved.
Keywords: Grief Transplantation Heart Qualitative Merleau-Ponty Disenfranchised
Introduction
Grief
Heart transplantation is the accepted therapy for patients with advanced heart failure. Many return to ‘normal’ lives, but many face challenges such as rejection, infection, renal dysfunction, and cancer. Some may also experience depression, anxiety and others types of distress.1 Previous findings made clear that 88% of heart transplant recipients’ (HTR) interviewed expressed feelings of distress,1 and all patients listed for heart transplant expressed feelings of loss.2 To explore these issues further, a secondary qualitative analysis of existing audio and visual interview data was conducted. The purpose of this article is to outline the subsequent findings of that analysis with respect to the loss and grief experienced by patients before and after heart transplant.
Outside clinical transplantation, much has been written on loss and grief.3e16 Attempts to understand grief reactions and the differences between ‘normal’ and ‘problematic’ forms of grief have been underway for over a century,5 as have critiques of the application of linear, step-based models of grief.4,5,7,17 Although the widely adopted stage model of grief was introduced by Elisabeth Kubler-Ross in 1969, she argues it was only intended as a guide, for grief is “not just a series of events, stages or timelines” and cannot be contained conceptually.18 Nevertheless, conceptual models or frameworks abound,7 and scholars continue to expand on grief categories, typologies and tasks.3,9,11e13,16,19,20 In addition, several other themes remain constant through much of the broader grief literature. Some contend that each experience is as unique as the person who grieves and the relationship they had with the deceased.3e5,7,9,14,16,20 Arguments have been made that bereaved individuals ‘continue bonds’ with the deceased after death.4,5,16,17 Others focus on ‘making meaning’ of the death7,11 or ‘appreciation of transformation.’3 Finally, developments in the ‘new science of bereavement’4 have identified that resilience is another central notion in understanding loss and
Conflict of interest: The authors have no competing/conflicts of interest to declare. * Corresponding author. School of Social Work, Faculty of Community Services, Ryerson University, 350 Victoria Street, EPH-220, Toronto, Ontario M5B 2K3, Canada. Tel.: þ1 416 979 5000x6253; fax: þ1 416 979 5214. E-mail address: [email protected] (J. Poole). 0147-9563/$ e see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.hrtlng.2016.01.006
2
J. Poole et al. / Heart & Lung xxx (2016) 1e6
grief, and one which has also been used to differentiate between ‘normal’ and severe grief reactions. Grief and organ donation When it comes to the clinical literature on grief and organ donation, the research has been more concerned with donor families and not patients before and after transplant.21e23 This donor family scholarship speaks to both positive21,24e27 and negative21,24,26,28 grief responses to three key foci: organ procurement, the decision making process, and the gift of life discourse. As an example of this work, Clerin and Zolen suggest21 that consent to organ donation neither impedes nor advances grief reactions for donor families, but that decision making interactions with medical personnel have the greatest grief impact. Stouder et al23 argue organ donation is a positive factor in the grieving process for families. There is minimal inquiry into the experiences of bereaved families who decide against donation.29 Some suggest the research on grief and transplantation needs to be more broad,5,26 for it does not adequately explore the grief experiences of those bereaved by sudden or violent means.5 They call for research that examines the context of grief. Calls have also been made for research to examine particular expressions of grief30 related to transplant such as those in non-white and non-Christian communities.31e33 Patient experience may also be left out of the conversation around grief and transplantation.34 In their 2010 practice review of psychological and psychosocial issues for transplant recipients, Rainer et al33 argue the transplantation process may leave the recipient with a mixture of distressing experiences including depression, fear and grief. However there is a lack of attention paid and little legitimacy given to patients’ subjective reports of their suffering.33 After transplantation, patients are often encouraged to be grateful.35 Yet they may feel gratitude mixed with grief for the donor.1,19 Seldom are these mixed and complicated feelings given the attention they deserve in clinical heart transplantation research.36 Research question Consequently, this inquiry set out to explore not only what patients listed for and living with heart transplant said about loss and grief, but also how they expressed their embodied and often complex feelings. The research question was: What are the loss and grief experiences of patients waiting for and living with new hearts? Methods This question guided a secondary qualitative analysis of audiovisual interview data1,35,37,38 previously gathered by the team. The interdisciplinary team included a nursing academic, advanced practice nurse, transplant cardiologist, transplant psychiatrist, critical theorist of embodiment and bioethics, a social scientist of mental health and a social worker. For this project, the research team viewed and coded the audio-video interviews and transcripts, discussed themes and generated analytic categories. Theoretical orientation In a direct departure from most clinical heart transplant research, the team’s original visual methodology is oriented to the embodiment work of Merleau-Ponty, an existential phenomenological philosopher.1 Merleau-Ponty demands a focus not only on speech, such as what research participants say
in response to questions or surveys, but also on what participants communicate with their bodies (for example hand gestures and facial expressions) at a particular time and place. This approach also focusses on intercorporeality or the physical (the transplanted organ) and emotional connections (kinship) between bodies, such as the heart donor and the recipient. Merleau-Ponty argues that changes to the body, such as those that come with heart transplantation, also create changes to the self and vice versa.39e44 In short, this theoretical lens forces the researcher to go beyond numbers and words in exploring the heart transplantation process.45 Using a qualitative visual method was the natural next step. Qualitative visual methods Qualitative visual research covers a range of methods and practices that involve the use of visual media and technologies at all stages of the research.1,37 Visual research is rarely purely visual, often involving the combination of visual, verbal and written methods such as in-depth interviewing, field notes or participant observation.1,35,37 Although new in transplant circles, visual research has had a place in social sciences since the 1920’s, with a branch developing in anthropology46,47 and one in sociology.48e54 The latter came to be known as visual sociology (now commonly referred to as visual methods) and may include the use of photograph specific approaches and digital film/video methods. Haw and Hadfield54 divided video methods into five modalities including those that are more participatory and those that focus on extraction or using video to record a specific interaction, such as a research interview with transplant patients, so that it can be studied in more depth. The extraction method used to gather data in this study was also influenced by the qualitative visual methods developed by Heath,55e57 who draws on the principles of conversation analysis to examine social interactions. Focusing on “expressive gestures”57 for example, Heath examines how gesture and bodily conduct are used to “display, enact and (re)embody . difficulties.”57 This process “. render[s] visible what would otherwise remain hidden and unavailable for inspection.”57 Drawing on these approaches, a number of papers have been published that outline the method developed by the interdisciplinary team.35,38 These papers detail how video has been used in concert with in-depth interviewing and field notes to examine the process of incorporating a transplanted heart, incongruities between participants’ words and their embodied ‘expressive gestures’ as well as ‘the obligation to say thank you’ felt by many heart transplant recipients.1,35,37,38 For this secondary analysis, the research team went back to the interview data once more. Participants After approval from the Research Ethics Board at the hospital, the focused open-ended interviews were previously conducted in a non-clinical setting with 23 participants listed for transplant [52% male, mean age 51.5 9 years; mean 7.4 7.3 months on list] and 27 medically stable heart transplant recipients [70% male, mean age 53 yrs 13.77; range 18e72; mean time since transplant 4.06 yrs 2.42]. The patients had been identified by clinic nurse coordinators, were diverse in terms of culture and race, were English-speaking and had no documentation of cognitive compromise. One male and one female declined for unspecified reasons. Each patient signed an informed consent prior to participation. Patient interviews were anonymized. Each patient was given a numerical identifier that indicated if they were pre or post heart transplant (i.e. Pre-11).
J. Poole et al. / Heart & Lung xxx (2016) 1e6
Data collection and analysis Interviews were audio/video-taped and transcribed verbatim. NVivo8 qualitative software was used to code text and body language, volume and tone.55e57 Data from 15 participants in each cohort who had spoken/expressed loss in their interviews were then selected for a more in depth secondary qualitative analysis. This six step analysis process consisted of members of our research team reading through and analyzing each selected interview, identifying preliminary codes around loss and/or grief and ideas about what was proving thematically salient across each group. Consistent with the developed methodology, each video was viewed multiple times, noting ‘key moments,’ ‘gestures’ or ‘disjuncts’ between verbal and embodied expressions.57 Results In this section the results of the analyses are outlined, attending to what interview participants communicated around four central themes: loss, anticipatory grief, complicated grief and disenfranchised grief. Pre-transplant cohort: loss Loss can be explained as the end of an attachment or a separation,34 and one that is usually accompanied by a set of secondary losses such as loss of income or interest in a treasured pursuit.36 All the participants interviewed in the pre-transplant group expressed feelings of loss including loss of their prior life; loss of control (uncertainty while waiting) and loss of autonomy (relying on others). Many cited being unable to work and the resulting financial strain as a major burden. I had an extremely good salary . extremely good salary, so there was never an issue of money, but what happened was in October when I went into hospital [for heart failure] I didn’t have the [financial resources] . I wasn’t prepared . most of the companies today all want a security clearance and a physical examination, a sort a fitness for duty. There’s no way I’m going to pass any of that stuff. (Pre-3) The secondary analysis also unearthed feelings of loss around their failing hearts. . I do feel a sense of loss . I know eventually it’s going to go . my heart has hung in there for me . I wish I could still have it . along with the new one . that will be sad when they take it. (Pre-15) Uncertainty about where patients are ‘on the list’ and the likelihood of transplant were also communicated. . the waiting for the transplant is something entirely different to me, and it’s the hardest thing because you’re shadow-boxing. You’re fighting something you can’t . you don’t know when that call’s going to come . you’re like Don Quixote, you’re fighting . you’re tilting at windmills. (Pre-22)
Pre-transplant cohort: anticipatory grief With respect to grief, the most dominant theme in the analysis of interviews from this pre-transplant cohort centered on anticipatory grief or how people prepare for their final separation from this world. Given the findings around loss in the pre-transplant group, it was not a surprise to find that participants experience anticipatory grief while preparing for the possibility of their own
3
death. Given the realities of living with heart failure, those interviewed often expressed a range of embodied grief reactions when looking ahead. While sometimes weeping, wringing their hands, speaking very quietly, physically withdrawing, exhibiting restlessness or rubbing a talisman or ‘artifact,’ they could see the potential for more loss and less future, and it played a significant role in their everyday quality of life. They noted: . you start crying because, you know, you’re going to die. (Pre-12) . I have to think about death and end-of-life because it’s there for me. (Pre-13) . but it’s still there in the back of my mind all the time, you know, that you’re . you’re changed, your . this is your . you know, your . I may die. (Pre-16) . my body is like . a temple . an Indiana Jones kind of temple. There’s traps everywhere and it can crumple at any second . (Pre-11) Another finding was that pre-transplant participants in the study experience anticipatory grief while contemplating the death of their potential heart donor. Such anticipatory pain was profoundly disturbing for participants. Tinged with guilt, participants were getting ready for their donor’s final ‘separation from this world’ and for some, it consuming, concerning and emotional.33 . somebody has to die for me to have a heart. That’s the only . only thing I can think of right now. (Pre-6) Uhm [pause] I know somebody has to, uhm, [choked up:] give up their life to . (Pre-1) . mine broke down and I’m going to get another one, and unfortunately someone’s going to have to die for me to get it, right? Which is the sad part, right? (Pre-21) . the only part that I find a little bit unnerving is that someone has to die [choked up:] for me to get a heart . So, uh, my good fortune depends on someone else’s bad fortune . (Pre-20) . at the point that the doctor told me when I was in the hospital that I needed a transplant, at first I was a bit . I was more overwhelmed, you know, a little scared, too, but I was more overwhelmed because I thought, “Oh, my god, like someone actually will have to grieve, a family will have to grieve.” I was more thinking of the family of . of the donor, thinking they’re going to have to go through a loss in order for me to live, and that made me feel kind of guilty and say, “Do I really want to do this? Do I have a choice?” . I felt like I was taking away their happiness . (Pre-7)
Post-transplant cohort: complicated grief Turning now to the post-transplant group, the first dominant theme was around complicated grief or prolonged grief disorder.14,58 Although debated,14 such grief is defined as unresolved and long-lasting feelings that may interfere with adherence to prescribed therapeutic regimens for a range of health concerns and may also contribute to suicidal thoughts,14 cancer and substance misuse.59 With respect to transplant, it may include persistent thoughts about the deceased donor or avoidance of anything to do with the donor and their family such as writing the suggested ‘thank you’ letter.35 It may lead to strong urges to feel close to the deceased donor/family by researching donor identity, hiring a private investigator and/or writing to or seeking to know and visit the family. As detailed in the table below, post-transplant recipients expressed all of these feelings (see Table 1).
4
J. Poole et al. / Heart & Lung xxx (2016) 1e6
Post-transplant cohort: disenfranchised grief A second dominant theme in the post-transplant group was disenfranchised grief or grief reactions that are considered unacceptable because of the circumstances surrounding the loss or death60e62 or the relationship between the deceased and the griever. For instance, the laws governing local practice stipulate that recipients should not know who the heart donor was. Although encouraged to be grateful for the gift, locally a relationship between the recipient and the donor family is actively discouraged, and all communication must be depersonalized and vetted by an institutional third party. It is a devalued connection, with limited options for accepted grievability. Instead, recipients feel obligated to appear to be ‘happy,’ ‘grateful’ and ‘worthy,’ displaying all the requisite emotions that kind of ‘body-place’ demands. Yet, there are few relationships as close or intercorporeal than that of donor and recipient. Flesh becomes flesh, blood becomes blood and a physical connection is created by those who decide on the ‘match’ of a lifetime. With such relationship inevitably comes the possibility of grief, but for recipients, it is silenced and often disallowed. As detailed below, transplant recipients are no strangers to this: . I just think that is such a great gift that they can give, and, uh, [pause] . when I received it, that day, and when my one-year anniversary was, I was thinking of the death of that person and it just made me sad, you know, for the family, but I hope that they’re proud of what they did, I’m sure they are. So, I think [sighs] sometimes when I get teary-eyed it’s more of e right now e emotion that I went through, because up until just recently whenever I go to the centre for my rehab, like, I’m always happy and laughing and doing my exercise and everything, and it’s just been, like I said, for a month, a month or two now, because of what I’m going through in my private life. And they noticed that there . like, I wasn’t the same myself with them as I used to be . (Post-22) Look, don’t complain about it. It’s okay. Just keep quiet . but there is something to it, there’s some mystery that people don’t want to talk about because they think that doctors will say, “Oh, the guy is a little bit crazy” . (Post-23) I didn’t want to be a bother to anybody, I just wanted to sit in my yard, sit in a chair, didn’t want to talk to anybody . I just wanted to sit there . that’s all I wanted to do. Then I started to take little walks. Still didn’t want to talk to anybody. Oh, I don’t know. After the first year, I would say . oh, yeah maybe the year, it’s just in this first part of this year that I started getting these little . Don’t know why. Didn’t think about anything, I was just thinking about, I don’t know . (Post-26)
I wish I didn’t feel the things that I do, because sometimes it’s just overwhelming, it’s just too much . sometimes I dream that I’m dying, and at that point in my head I’m trying to figure out what happens when you die and where you go, and on more than one occasion I could swear I was actually dying, and it’s like trying to wake yourself from a nightmare but you can’t wake up . I don’t know what to do to get the idea out of my head that something could happen and I’m going to die . (Post-7) Discussion In summary, there were four themes in this secondary, focused qualitative analysis of grief and loss. For those pre-transplant, the dominant themes were loss and anticipatory grief. For those who are post-transplant, the dominant themes are complicated and disenfranchised grief. Such an analysis is limited by the size of the sample, the number of interviews conducted with each participant and the difficulties of conducting a secondary analysis on existing data. Because grief was not the primary focus of the initial study, participants were not asked what would most help them cope with the loss and grief they were experiencing. Similarly, the presence of loss and grief in the data and analysis was initially overlooked in favor of a focus on patient gratitude and the prevalence of feelings of distress in heart transplant recipients. This practice mirrors the disenfranchisement of grief and death-talk that may take place in clinical heart transplantation work. Indeed, before transplant and during end stage heart failure, patients must prepare for the possibility of death, are supposed to have conversations with their loved ones and clinical teams about how they want those deaths to unfold and yet, the possibility of extended life through heart transplantation takes center stage in the heads and hearts of patients and clinicians alike. How does a clinician proceed? Similarly, how does one take up the equally troubling idea that patients may be experiencing anticipatory grief for the donor, someone they have never and will never know? This study suggests this kind of grief is worthy of further inquiry for clinicians who play a role in allowing, managing and supporting grievability in heart transplantation. Could this kind of anticipatory grief be welcomed into the clinical conversation and attended to as central to a patient’s physical, mental and emotional wellbeing? In the clinical heart transplant literature, there is also a lack of attention paid to complicated grief or the grief that lasts. It has been reported that recipients may try to avoid writing the suggested ‘thank you’ letter to the donor family or avoid the annual donor memorial service.35 Are these recipient responses a key aspect of complicated grief, as are their attempts to ‘know’ the donor through repeated letters to the family? Of concern are the possible long
Table 1 Aspects of complicated grief expressed by post-transplant participants. Aspect of complicated grief
Participant quote
Long lasting and profound grief for the donor
. uhm, I can’t watch any movies that have . [sighing] let’s say true stories which reflect real life [about transplant] and this is very sad. Oh, immediately the tears just . you know, I can’t stop it . (Post-23) . somebody dies to make someone live, you know . quite a . [pause] You think about it all the time . painful for me to think about the donor . I don’t know if it’s pain, its more grief. (Post-9) I ask all the time I’m there if I can meet these people [the donor family] . Yeah, I really love to meet these people. Maybe one day . just to listen their son heart that still beat, that’s the only thing, meet these people. (Post-15) . [pause] Uh, to tell you the truth, I don’t really want to [think about the donor]. I think it’s better that way . (Post-4) [when asked about going to a donor memorial service] No, and I tell you the reason . there’s an issue when you get into [the church], when they have with the donors and all that, uh, [sighs] somehow it . I’m uneasy about it, I’m very uneasy, because [pause] I don’t want to get disappointed . (Post-23)
Persistent thoughts about the deceased donor Strong urge to feel close/meet donor family
Donor/donor family avoidance Donor/donor family avoidance
J. Poole et al. / Heart & Lung xxx (2016) 1e6
term health effects of complicated grief14 for transplant recipients such as stroke, cancer, substance misuse, mental health issues, suicidal thoughts and ironically, worsening heart health. Additionally the length of ‘allowed’ grief time is of issue, yet grieved connection between recipient and donor may remain a complicated one until the recipient dies.34 Complicated grief is a widely contested term in grief and bereavement literature.5,6,11e14,21,63 Some purport that ‘complicated grief’ is itself a by-product of linear grief models5 and attempts to expand psychiatric diagnostic criteria.63 As a result, ‘closure’ becomes a problem when grief fails to reach ‘completion.’5 As the discourse of complicated grief spreads, the grieving may become more distressed if they experience what they determine to be outside the normal realm of grief reactions.5,30 It would appear that labels such as ‘complicated grief’ should be applied with caution.63,64 Such ‘out of the ordinary’ grief may actually be ordinary for all those affected by heart transplant.26,27 In this particular group of grievers, the rates of ‘complication’ may be far higher than 2e3% cited in the recent literature.14 Indeed, given the anticipated and always complex intercorporeality between recipient and donor, it may be perfectly ‘normal’ for potential and actual recipients to be ‘taken up’ with their donors indefinitely. Additionally pressing are the questions about disenfranchised grief. This kind of grief is of particular concern because patients may keep quiet or not acknowledge their pain, disallowing themselves the outward mourning that may be culturally appropriate14 and cathartic. They may also be denying themselves valuable support. Are discourses around linearity, the rhetoric of gratitude and gifting in the heart transplant community partly to blame?64e66 These discourses may pathologize long term grief for donors and silence death-talk. There may be an unexpressed and unintended complicity between medical teams, recipients and their families to de-center unresolvable grief in favor of a focus on life. With such difficulties, it is hard to support those who grieve in anticipation, in complication and in silence. With respect to complicated grief, Shear14 suggests tools such as ‘the brief grief questionnaire,’ psychotherapy and pharmacology. She also outlines core components of talk treatment for complicated grief including building connections and reviewing positive memories of the deceased. Yet how can transplant recipients review these memories when they have never met and may be denied access to the donor family due to law and anonymity policies? As there have been critiques of the steps and stages of grief, critiques have emerged around how to acknowledge and better ‘know’ grief in health work. Interestingly, there has been a shift away from formal grief ‘interventions’4,5,7,8 with some scholars citing expertise as a barrier to meaningful interactions with those who grieve. Instead, some suggest that grievers and those that aim to assist or ‘companion’3 them may embrace storytelling.3,7,8,14,45,67 Qualitative research methods may afford those who grieve a profound way to do just this. With time built in for informal discussion, with open ended questions and with active listening, research interviewers companion those who grieve, capturing not only what they say but also how they express and embody pain.1 By sharing parts of those stories, such researchers may create the possibility for more storytelling67 while validating the grief experience associated with those who wait for and live with heart transplant. Conclusion Results of this secondary qualitative analysis highlight patients’ feelings and experiences of loss, anticipatory grief, complicated grief and disenfranchised grief. For patients waiting for transplant, they may grieve in anticipation not only for the possibility of their
5
own death but also for the death of their potential donor. For heart transplant recipients, this grief for someone who is both connected and yet not known to them may be ever-present, long-lasting and complicated. It may also be unacceptable or disenfranchised, silencing patients and affecting their quality of life. The study suggests all of these forms of loss and grief are worthy of further inquiry by clinicians who play a role in allowing, managing and supporting grievability in heart transplantation. Acknowledgments We acknowledge the thoughtful participation of those involved in our research thus far as well as those who are taking up these ideas in practice and care. We also acknowledge the research support for this aspect of the project provided by a seed grant from the Faculty of Community Services at Ryerson University. References 1. Ross H, Abbey S, De Luca E, et al. What they say versus what we see: ‘hidden’ distress and impaired quality of life in heart transplant recipients. J Heart Lung Transplant. 2010;29:1142e1149. http://dx.doi.org/10.1016/j.healun.2008. 11.187. 2. Mauthner O, Poole J, De Luca E, et al. Life on the heart transplant waiting list: life on hold? Life at all? J Heart Lung Transplant. 2013;32(4S):S196. 3. Wolfelt AD. The Journey Through Grief: Reflections on Healing. Companion Press; 2003. 4. Bonanno GA. The Other Side of Sadness: What the New Science of Bereavement Tells Us about Life after Loss. Basic Books; 2009. 5. Breen LJ, O’Connor M. The fundamental paradox in the grief literature: a critical reflection. OMEGA J Death Dying. 2007;55(3):199e218. 6. Goodkin DL, Frasca A, Molina R, et al. Complicated Bereavement: a commentary on its state of evolution. OMEGA J Death Dying. 2006;52(1):99e105. 7. Hadad M. The Ultimate Challenge: Coping With Death, Dying and Bereavement. Toronto, ON: Nelson Education; 2009. 8. Hollander EM. Am I alright? J Loss Trauma. 2004;9:201e204. 9. Kübler-Ross E, Kessler D. On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. New York, NY: Scribner; 2005. 10. Lewis CS. A Grief Observed. New York, NY: Harper Collins Publishers; 1961. 11. Neimeyer RA. Complicated grief and the quest for meaning: a constructivist contribution. OMEGA J Death Dying. 2005;2(1):37e52. 12. Parkes C. Bereavement: Studies in Grief in Adult Life. Philadelphia: Taylor and Francis; 1996. 13. Rando T. Treatment of Complicated Mourning. Champaign, Illinois: Research Press; 1993. 14. Shear MK. Complicated grief. N Engl J Med. 2015;372(2):153e160. http:// dx.doi.org/10.1056/NEJMcp1315618. 15. Shear MK, Skritskaya NA. Bereavement and anxiety. Curr Psychiatry Rep. 2012;14:169e175. 16. Worden JW. Grief Counselling and Grief Therapy. New York, NY: Springer Publishing Ltd; 2009. 17. Klass D. Grief in an eastern culture: Japanese ancestor worship. In: Klass D, Silverman RP, Nickman SL, eds. Continuing Bonds: New Understandings of Grief. Washington, D.C.: Taylor and Francis; 1996:59e70. 18. Kubler Ross E. On Death and Dying. New York, NY: Macmillan; 1969. 19. Kaba E, Thompson DR, Burnard P, Edwards D, Theodosopoulou E. Somebody else’s heart inside me: a descriptive study of psychological problems after heart transplantation. Issues Ment Health Nurs. 2005;26:611e625. http://dx.doi.org/ 10.1080/01612840590959452. 20. O’Hara K. A Grief Like No Other: Surviving the Violent Death of Someone You Love. New York, NY: Marlowe and Company; 2006. 21. Cleiren M, van Zoelen AJ. Post-mortem organ donation and grief: a study of consent, refusal and well-being in bereavement. Death Stud. 2002;26(10):837e 849. 22. Manuel A, Solberg S, MacDonald S. Organ donation experiences of family members. Nephrol Nurs J. 2010;37(3):229e236. 23. Stouder DB, Schmid A, Ross SS, Ross LG, Stocks L. Family, friends, and faith: how organ donor families heal. Prog Transplant. 2009;19(4): 358e361. 24. Merchant SJ, Yoshida EM, Lee TK, Richardson P, Karlsbjerb KM, Cheung E. Exploring the psychological effects of deceased organ donation on the families of the organ donors. Clin Transplant. 2008;22(3):341e347. http://dx.doi.org/ 10.1111/j.1399-0012.2008.00790.x. 25. Sque M, Payne S, Macleod Clark J. Gift of life or sacrifice?: key discourses to understanding organ donor families’ decision-making. Mortality. 2006;11(2): 117e132. http://dx.doi.org/10.1080/13576270600615260. 26. Soriano-Pacheco JA, Lopez-Navidad A, Caballero F, Leal J, Garcia-Sousa S, Linares JL. Psychopathology of bereavement in the families of cadaveric organ donors. Transplant Proc. 1999;31(6):2604e2605.
6
J. Poole et al. / Heart & Lung xxx (2016) 1e6
27. Shaw R. Perceptions of the gift relationship in organ and tissue donation: Views of intensivists and donor and recipient coordinators. Soc Sci Med. 2010;70(4):609e615. http://dx.doi.org/10.1016/j.socscimed.2009.10.062. 28. Sque M, Long T, Payne S, Allardyce D. Why relatives do not donate organs for transplants: ‘sacrifice’ or ‘gift of life’? J Adv Nurs. 2008;61(2):134e144. http:// dx.doi.org/10.1111/j.1365-2648.2007.04491.x. 29. Sarbin TR. Embodiment and the narrative structure of emotional life. Narrat Inq. 2001;11(1):217e225. http://dx.doi.org/10.1075/ni.11.1.09sar. 30. Carpenter B, Tait G, Quadrelli C. The body in grief: death investigations, objections to autopsy, and the religious and cultural ‘Other’. Religions. 2014;5(1): 165e178. http://dx.doi.org/10.3390/rel5010165. 31. Rady MY, Verheijde JL, Ali MS. Islam and end-of-life practices in organ donation for transplantation: new questions and serious sociocultural consequences. HEC Forum. 2009;21(2):175e205. http://dx.doi.org/10.1007/s10730009-9095-8. 32. Robson NZ, Razack AH, Dublin N. Organ transplants: ethical, social, and religious issues in a multicultural society. Asia Pac J Public Health. 2010;22(3):271e 278. http://aph.sagepub.com/content/early/2010/02/26/10. 33. Rainer JP, Thompson CH, Lambros H. Psychological and psychosocial aspects of the solid organ transplant experience e a practice review. Psychotherapy. 2010;47(3):403e412. http://dx.doi.org/10.1037/a0021167. 34. Corr CA, Coolican MB. Understanding bereavement, grief and mourning: Implications for donation and transplant professionals. Prog Transplant. 2010;20(2):169e177. http://dx.doi.org/10.7182/prtr.20.2.w7727276m86241w4. 35. Poole JM, Shildrick M, De Luca E, et al. The obligation to say ‘thank you’: heart transplant recipients’ experience of writing to the donor family. Am J Transplant. 2011;11(3):619e622. http://dx.doi.org/10.1016/j.healun. 2009.11.172. 36. Corr CA, Coolican MB, Moretti LS, Simon R. Donor families, distinctive secondary losses, and “second death” experiences. Prog Transplant. 2011;21(3): 220e227. 37. Mauthner O, De Luca E, Poole J, et al. The preparation and support of patients through the transplant process: the recipients’ perspectives. Nurs Res Pract; 2012. http://dx.doi.org/10.1155/2012/547312. 38. Mauthner O, De Luca E, Poole J, et al. Heart transplants: Identity disruption, bodily integrity and interconnectedness. Health; 2014. http://dx.doi.org/ 10.1177/1363459314560067. 39. Merleau-Ponty M. The Phenomenology of Perception. London, UK: Routledge and Kegan Paul; 1968. 40. Merleau-Ponty M. The Visible and the Invisible. Evanston, IL: Northwestern University Press; 1968. 41. Kvigne K, Gjengedal E, Kirkevold M. Gaining access to the life-world of women suffering from stroke: methodological issues in empirical phenomenological studies. J Adv Nurs. 2002;40:61e68. http://dx.doi.org/10.1046/j.13652648.2002.02340.x. 42. VanManen M. Modalities of body experience in illness and health. Qual Health Res. 1998;8(1):7e24. 43. Shildrick M. Visceral phenomenology: organ transplantation, identity and sexual difference. In: Zeiler K, Käll LF, eds. Feminist Phenomenology and Medicine. Sunny Press; 2014:47e69. 44. Gudmundsdottir M. Embodied grief: bereaved parents’ narratives of their suffering body. OMEGA J Death Dying. 2009;59(3):253e269. http://dx.doi.org/ 10.2190/OM.59.3.e. 45. Robinson C. Grieving home. Soc Cult Geogr. 2005;6(1):47e60.
46. Giorgi A. The status of Husserlian phenomenology in caring research. Scand J Caring Sci. 2000;14:3e10. 47. Giorgi A. Concerning the application of phenomenology to caring research. Scand J Caring Sci. 2000;14:11e15. 48. Norlyk A, Harder I. What makes a phenomenological study phenomenological? an analysis of peer-reviewed empirical nursing studies. Qual Health Res. 2010;20:420e431. http://dx.doi.org/10.1177/1049732309357435. 49. Shrum W, Duque R, Brown T. Digital video as research practice: methodology for the millennium. J Res Pract. 2005;1:1e19. 50. Gauntlett D, Holzwarth P. Creative and visual methods for exploring identities. Vis Stud. 2006;2:82e91. 51. Pink S. More visualizing, more methodologies: on video, reflexivity and qualitative research. Editor Board Sociol Rev. 2001;49:586e599. 52. Bateson G, Mead M. Balinese Character: A Photographic Analysis. New York: NY: Academy of Sciences; 1942. 53. Collier J. Visual anthropology. In: Wagner JC, ed. Images of Information. Still Photography in the Social Sciences. London, UK: Sage; 1979. 54. Haw K, Hadfield M. Video in Social Science Research: Functions and Forms. New York, NY: Routledge; 2011. 55. Heath C. The analysis of activities in face to face interaction in using video. In: Silvermann D, ed. Qualitative Research: Theory, Method and Practice. 2nd ed. London, UK: Sage Publications; 1998:183e200. 56. Heath C. Demonstrative suffering: the gestural (re)embodiment of symptoms. J Commun. 2002;52:597e616. http://dx.doi.org/10.1111/j.1460-2466.2002. tb02564.x. 57. Heath C, Hindmarsh J, Luff P. Video in Qualitative Research; Analyzing Social Interaction in Everyday Life. Los Angeles, CA: Sage Publications; 2010. 58. Shear MK, Simon N, Wall M, et al. Complicated grief and related bereavement issues for DSM-5. Depress Anxiety. 2011;28(2):103e117. http://dx.doi.org/ 10.1002/da.20780. 59. Bush NJ. Post-traumatic stress disorder related to cancer: Hope, healing, and recovery. Oncol Nurs Forum. 2010;37(5):E331eE343. http://dx.doi.org/10.1188/ 10.ONF.E331-E343. 60. Doka KJ. Disenfranchised Grief: Recognizing Hidden Sorrow. Lexington, MA: Lexington Books; 1989. 61. Doka KJ. Ethics, end-of-life decisions and grief. Mortality. 2002;10(1):83e90. 62. Gill P, Lowes L. Renal transplant failure and disenfranchised grief: Participants’ experiences in the first year post-graft failure e a qualitative longitudinal study. Int J Nurs Stud. 2014;51(9):1271e1280. http://dx.doi.org/10.1016/j. ijnurstu.2014.01.012. 63. Prigerson HG, Maciejewski PK. A call for sound empirical testing and evaluation of criteria for complicated grief proposed for DSM-V. OMEGA J Death Dying. 2006;52(1):9e19. http://dx.doi.org/10.2190/ANKH-BB2H-D52N-X99Y. 64. Poole J, Ward J. Breaking open the bone: storying, sanism and mad grief. In: LeFrancois B, Menzies R, Reaume G, eds. Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars Press; 2013: 94e104. 65. Shildrick M. Hospitality and ‘the gift of life’: reconfiguring the other in heart transplantation. In: Gonzalez-Arnal S, Jagger G, Lennon K, eds. Embodied Selves. UK: Palgrave Macmillan; 2012:196e209. 66. Lamanna M. Gifting and getting: altruism and exchange in transplantation. J Med Humanit. 1997;18:169e192. 67. Frank AW. The Wounded Storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press; 2013.
Contents lists available at ScienceDirect
Heart & Lung journal homepage: www.heartandlung.org
Grief and loss for patients before and after heart transplant Jennifer Poole, MSW, PhD a, *, Jennifer Ward, BSW a, Enza DeLuca, MN b, Margrit Shildrick, PhD c, Susan Abbey, MD d, Oliver Mauthner, MN, PhD e, Heather Ross, MD b a
School of Social Work, Faculty of Community Services, Ryerson University, 350 Victoria Street, Toronto, Ontario M5B 2K3, Canada Division of Cardiology and Transplant, University Health Network, 585 University Avenue, PMB 11-137, Toronto, Ontario M5G 2N2, Canada c Tema Genus, Linkoping University, Linkoping 58183, Sweden d Department of Psychiatry, University Health Network, 585 University Avenue, PMB 11-100D, Toronto, Ontario M5G 2N2, Canada e Institute of Nursing Science, Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 15 July 2015 Received in revised form 14 January 2016 Accepted 16 January 2016 Available online xxx
Objectives: The purpose of the study was to examine the loss and grief experiences of patients waiting for and living with new hearts. Background: There is much scholarship on loss and grief. Less attention has been paid to these issues in clinical transplantation, and even less on the patient experience. Methods: Part of a qualitative inquiry oriented to the work of Merleau-Ponty, a secondary analysis was carried out on audiovisual data from interviews with thirty participants. Results: Patients experience loss and three forms of grief. Pre-transplant patients waiting for transplant experience loss and anticipatory grief related to their own death and the future death of their donor. Transplanted patients experience long-lasting complicated grief with respect to the donor and disenfranchised grief which may not be sanctioned. Conclusions: Loss as well as anticipatory, complicated and disenfranchised grief may have been inadvertently disregarded or downplayed. More research and attention is needed. Ó 2016 Elsevier Inc. All rights reserved.
Keywords: Grief Transplantation Heart Qualitative Merleau-Ponty Disenfranchised
Introduction
Grief
Heart transplantation is the accepted therapy for patients with advanced heart failure. Many return to ‘normal’ lives, but many face challenges such as rejection, infection, renal dysfunction, and cancer. Some may also experience depression, anxiety and others types of distress.1 Previous findings made clear that 88% of heart transplant recipients’ (HTR) interviewed expressed feelings of distress,1 and all patients listed for heart transplant expressed feelings of loss.2 To explore these issues further, a secondary qualitative analysis of existing audio and visual interview data was conducted. The purpose of this article is to outline the subsequent findings of that analysis with respect to the loss and grief experienced by patients before and after heart transplant.
Outside clinical transplantation, much has been written on loss and grief.3e16 Attempts to understand grief reactions and the differences between ‘normal’ and ‘problematic’ forms of grief have been underway for over a century,5 as have critiques of the application of linear, step-based models of grief.4,5,7,17 Although the widely adopted stage model of grief was introduced by Elisabeth Kubler-Ross in 1969, she argues it was only intended as a guide, for grief is “not just a series of events, stages or timelines” and cannot be contained conceptually.18 Nevertheless, conceptual models or frameworks abound,7 and scholars continue to expand on grief categories, typologies and tasks.3,9,11e13,16,19,20 In addition, several other themes remain constant through much of the broader grief literature. Some contend that each experience is as unique as the person who grieves and the relationship they had with the deceased.3e5,7,9,14,16,20 Arguments have been made that bereaved individuals ‘continue bonds’ with the deceased after death.4,5,16,17 Others focus on ‘making meaning’ of the death7,11 or ‘appreciation of transformation.’3 Finally, developments in the ‘new science of bereavement’4 have identified that resilience is another central notion in understanding loss and
Conflict of interest: The authors have no competing/conflicts of interest to declare. * Corresponding author. School of Social Work, Faculty of Community Services, Ryerson University, 350 Victoria Street, EPH-220, Toronto, Ontario M5B 2K3, Canada. Tel.: þ1 416 979 5000x6253; fax: þ1 416 979 5214. E-mail address: [email protected] (J. Poole). 0147-9563/$ e see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.hrtlng.2016.01.006
2
J. Poole et al. / Heart & Lung xxx (2016) 1e6
grief, and one which has also been used to differentiate between ‘normal’ and severe grief reactions. Grief and organ donation When it comes to the clinical literature on grief and organ donation, the research has been more concerned with donor families and not patients before and after transplant.21e23 This donor family scholarship speaks to both positive21,24e27 and negative21,24,26,28 grief responses to three key foci: organ procurement, the decision making process, and the gift of life discourse. As an example of this work, Clerin and Zolen suggest21 that consent to organ donation neither impedes nor advances grief reactions for donor families, but that decision making interactions with medical personnel have the greatest grief impact. Stouder et al23 argue organ donation is a positive factor in the grieving process for families. There is minimal inquiry into the experiences of bereaved families who decide against donation.29 Some suggest the research on grief and transplantation needs to be more broad,5,26 for it does not adequately explore the grief experiences of those bereaved by sudden or violent means.5 They call for research that examines the context of grief. Calls have also been made for research to examine particular expressions of grief30 related to transplant such as those in non-white and non-Christian communities.31e33 Patient experience may also be left out of the conversation around grief and transplantation.34 In their 2010 practice review of psychological and psychosocial issues for transplant recipients, Rainer et al33 argue the transplantation process may leave the recipient with a mixture of distressing experiences including depression, fear and grief. However there is a lack of attention paid and little legitimacy given to patients’ subjective reports of their suffering.33 After transplantation, patients are often encouraged to be grateful.35 Yet they may feel gratitude mixed with grief for the donor.1,19 Seldom are these mixed and complicated feelings given the attention they deserve in clinical heart transplantation research.36 Research question Consequently, this inquiry set out to explore not only what patients listed for and living with heart transplant said about loss and grief, but also how they expressed their embodied and often complex feelings. The research question was: What are the loss and grief experiences of patients waiting for and living with new hearts? Methods This question guided a secondary qualitative analysis of audiovisual interview data1,35,37,38 previously gathered by the team. The interdisciplinary team included a nursing academic, advanced practice nurse, transplant cardiologist, transplant psychiatrist, critical theorist of embodiment and bioethics, a social scientist of mental health and a social worker. For this project, the research team viewed and coded the audio-video interviews and transcripts, discussed themes and generated analytic categories. Theoretical orientation In a direct departure from most clinical heart transplant research, the team’s original visual methodology is oriented to the embodiment work of Merleau-Ponty, an existential phenomenological philosopher.1 Merleau-Ponty demands a focus not only on speech, such as what research participants say
in response to questions or surveys, but also on what participants communicate with their bodies (for example hand gestures and facial expressions) at a particular time and place. This approach also focusses on intercorporeality or the physical (the transplanted organ) and emotional connections (kinship) between bodies, such as the heart donor and the recipient. Merleau-Ponty argues that changes to the body, such as those that come with heart transplantation, also create changes to the self and vice versa.39e44 In short, this theoretical lens forces the researcher to go beyond numbers and words in exploring the heart transplantation process.45 Using a qualitative visual method was the natural next step. Qualitative visual methods Qualitative visual research covers a range of methods and practices that involve the use of visual media and technologies at all stages of the research.1,37 Visual research is rarely purely visual, often involving the combination of visual, verbal and written methods such as in-depth interviewing, field notes or participant observation.1,35,37 Although new in transplant circles, visual research has had a place in social sciences since the 1920’s, with a branch developing in anthropology46,47 and one in sociology.48e54 The latter came to be known as visual sociology (now commonly referred to as visual methods) and may include the use of photograph specific approaches and digital film/video methods. Haw and Hadfield54 divided video methods into five modalities including those that are more participatory and those that focus on extraction or using video to record a specific interaction, such as a research interview with transplant patients, so that it can be studied in more depth. The extraction method used to gather data in this study was also influenced by the qualitative visual methods developed by Heath,55e57 who draws on the principles of conversation analysis to examine social interactions. Focusing on “expressive gestures”57 for example, Heath examines how gesture and bodily conduct are used to “display, enact and (re)embody . difficulties.”57 This process “. render[s] visible what would otherwise remain hidden and unavailable for inspection.”57 Drawing on these approaches, a number of papers have been published that outline the method developed by the interdisciplinary team.35,38 These papers detail how video has been used in concert with in-depth interviewing and field notes to examine the process of incorporating a transplanted heart, incongruities between participants’ words and their embodied ‘expressive gestures’ as well as ‘the obligation to say thank you’ felt by many heart transplant recipients.1,35,37,38 For this secondary analysis, the research team went back to the interview data once more. Participants After approval from the Research Ethics Board at the hospital, the focused open-ended interviews were previously conducted in a non-clinical setting with 23 participants listed for transplant [52% male, mean age 51.5 9 years; mean 7.4 7.3 months on list] and 27 medically stable heart transplant recipients [70% male, mean age 53 yrs 13.77; range 18e72; mean time since transplant 4.06 yrs 2.42]. The patients had been identified by clinic nurse coordinators, were diverse in terms of culture and race, were English-speaking and had no documentation of cognitive compromise. One male and one female declined for unspecified reasons. Each patient signed an informed consent prior to participation. Patient interviews were anonymized. Each patient was given a numerical identifier that indicated if they were pre or post heart transplant (i.e. Pre-11).
J. Poole et al. / Heart & Lung xxx (2016) 1e6
Data collection and analysis Interviews were audio/video-taped and transcribed verbatim. NVivo8 qualitative software was used to code text and body language, volume and tone.55e57 Data from 15 participants in each cohort who had spoken/expressed loss in their interviews were then selected for a more in depth secondary qualitative analysis. This six step analysis process consisted of members of our research team reading through and analyzing each selected interview, identifying preliminary codes around loss and/or grief and ideas about what was proving thematically salient across each group. Consistent with the developed methodology, each video was viewed multiple times, noting ‘key moments,’ ‘gestures’ or ‘disjuncts’ between verbal and embodied expressions.57 Results In this section the results of the analyses are outlined, attending to what interview participants communicated around four central themes: loss, anticipatory grief, complicated grief and disenfranchised grief. Pre-transplant cohort: loss Loss can be explained as the end of an attachment or a separation,34 and one that is usually accompanied by a set of secondary losses such as loss of income or interest in a treasured pursuit.36 All the participants interviewed in the pre-transplant group expressed feelings of loss including loss of their prior life; loss of control (uncertainty while waiting) and loss of autonomy (relying on others). Many cited being unable to work and the resulting financial strain as a major burden. I had an extremely good salary . extremely good salary, so there was never an issue of money, but what happened was in October when I went into hospital [for heart failure] I didn’t have the [financial resources] . I wasn’t prepared . most of the companies today all want a security clearance and a physical examination, a sort a fitness for duty. There’s no way I’m going to pass any of that stuff. (Pre-3) The secondary analysis also unearthed feelings of loss around their failing hearts. . I do feel a sense of loss . I know eventually it’s going to go . my heart has hung in there for me . I wish I could still have it . along with the new one . that will be sad when they take it. (Pre-15) Uncertainty about where patients are ‘on the list’ and the likelihood of transplant were also communicated. . the waiting for the transplant is something entirely different to me, and it’s the hardest thing because you’re shadow-boxing. You’re fighting something you can’t . you don’t know when that call’s going to come . you’re like Don Quixote, you’re fighting . you’re tilting at windmills. (Pre-22)
Pre-transplant cohort: anticipatory grief With respect to grief, the most dominant theme in the analysis of interviews from this pre-transplant cohort centered on anticipatory grief or how people prepare for their final separation from this world. Given the findings around loss in the pre-transplant group, it was not a surprise to find that participants experience anticipatory grief while preparing for the possibility of their own
3
death. Given the realities of living with heart failure, those interviewed often expressed a range of embodied grief reactions when looking ahead. While sometimes weeping, wringing their hands, speaking very quietly, physically withdrawing, exhibiting restlessness or rubbing a talisman or ‘artifact,’ they could see the potential for more loss and less future, and it played a significant role in their everyday quality of life. They noted: . you start crying because, you know, you’re going to die. (Pre-12) . I have to think about death and end-of-life because it’s there for me. (Pre-13) . but it’s still there in the back of my mind all the time, you know, that you’re . you’re changed, your . this is your . you know, your . I may die. (Pre-16) . my body is like . a temple . an Indiana Jones kind of temple. There’s traps everywhere and it can crumple at any second . (Pre-11) Another finding was that pre-transplant participants in the study experience anticipatory grief while contemplating the death of their potential heart donor. Such anticipatory pain was profoundly disturbing for participants. Tinged with guilt, participants were getting ready for their donor’s final ‘separation from this world’ and for some, it consuming, concerning and emotional.33 . somebody has to die for me to have a heart. That’s the only . only thing I can think of right now. (Pre-6) Uhm [pause] I know somebody has to, uhm, [choked up:] give up their life to . (Pre-1) . mine broke down and I’m going to get another one, and unfortunately someone’s going to have to die for me to get it, right? Which is the sad part, right? (Pre-21) . the only part that I find a little bit unnerving is that someone has to die [choked up:] for me to get a heart . So, uh, my good fortune depends on someone else’s bad fortune . (Pre-20) . at the point that the doctor told me when I was in the hospital that I needed a transplant, at first I was a bit . I was more overwhelmed, you know, a little scared, too, but I was more overwhelmed because I thought, “Oh, my god, like someone actually will have to grieve, a family will have to grieve.” I was more thinking of the family of . of the donor, thinking they’re going to have to go through a loss in order for me to live, and that made me feel kind of guilty and say, “Do I really want to do this? Do I have a choice?” . I felt like I was taking away their happiness . (Pre-7)
Post-transplant cohort: complicated grief Turning now to the post-transplant group, the first dominant theme was around complicated grief or prolonged grief disorder.14,58 Although debated,14 such grief is defined as unresolved and long-lasting feelings that may interfere with adherence to prescribed therapeutic regimens for a range of health concerns and may also contribute to suicidal thoughts,14 cancer and substance misuse.59 With respect to transplant, it may include persistent thoughts about the deceased donor or avoidance of anything to do with the donor and their family such as writing the suggested ‘thank you’ letter.35 It may lead to strong urges to feel close to the deceased donor/family by researching donor identity, hiring a private investigator and/or writing to or seeking to know and visit the family. As detailed in the table below, post-transplant recipients expressed all of these feelings (see Table 1).
4
J. Poole et al. / Heart & Lung xxx (2016) 1e6
Post-transplant cohort: disenfranchised grief A second dominant theme in the post-transplant group was disenfranchised grief or grief reactions that are considered unacceptable because of the circumstances surrounding the loss or death60e62 or the relationship between the deceased and the griever. For instance, the laws governing local practice stipulate that recipients should not know who the heart donor was. Although encouraged to be grateful for the gift, locally a relationship between the recipient and the donor family is actively discouraged, and all communication must be depersonalized and vetted by an institutional third party. It is a devalued connection, with limited options for accepted grievability. Instead, recipients feel obligated to appear to be ‘happy,’ ‘grateful’ and ‘worthy,’ displaying all the requisite emotions that kind of ‘body-place’ demands. Yet, there are few relationships as close or intercorporeal than that of donor and recipient. Flesh becomes flesh, blood becomes blood and a physical connection is created by those who decide on the ‘match’ of a lifetime. With such relationship inevitably comes the possibility of grief, but for recipients, it is silenced and often disallowed. As detailed below, transplant recipients are no strangers to this: . I just think that is such a great gift that they can give, and, uh, [pause] . when I received it, that day, and when my one-year anniversary was, I was thinking of the death of that person and it just made me sad, you know, for the family, but I hope that they’re proud of what they did, I’m sure they are. So, I think [sighs] sometimes when I get teary-eyed it’s more of e right now e emotion that I went through, because up until just recently whenever I go to the centre for my rehab, like, I’m always happy and laughing and doing my exercise and everything, and it’s just been, like I said, for a month, a month or two now, because of what I’m going through in my private life. And they noticed that there . like, I wasn’t the same myself with them as I used to be . (Post-22) Look, don’t complain about it. It’s okay. Just keep quiet . but there is something to it, there’s some mystery that people don’t want to talk about because they think that doctors will say, “Oh, the guy is a little bit crazy” . (Post-23) I didn’t want to be a bother to anybody, I just wanted to sit in my yard, sit in a chair, didn’t want to talk to anybody . I just wanted to sit there . that’s all I wanted to do. Then I started to take little walks. Still didn’t want to talk to anybody. Oh, I don’t know. After the first year, I would say . oh, yeah maybe the year, it’s just in this first part of this year that I started getting these little . Don’t know why. Didn’t think about anything, I was just thinking about, I don’t know . (Post-26)
I wish I didn’t feel the things that I do, because sometimes it’s just overwhelming, it’s just too much . sometimes I dream that I’m dying, and at that point in my head I’m trying to figure out what happens when you die and where you go, and on more than one occasion I could swear I was actually dying, and it’s like trying to wake yourself from a nightmare but you can’t wake up . I don’t know what to do to get the idea out of my head that something could happen and I’m going to die . (Post-7) Discussion In summary, there were four themes in this secondary, focused qualitative analysis of grief and loss. For those pre-transplant, the dominant themes were loss and anticipatory grief. For those who are post-transplant, the dominant themes are complicated and disenfranchised grief. Such an analysis is limited by the size of the sample, the number of interviews conducted with each participant and the difficulties of conducting a secondary analysis on existing data. Because grief was not the primary focus of the initial study, participants were not asked what would most help them cope with the loss and grief they were experiencing. Similarly, the presence of loss and grief in the data and analysis was initially overlooked in favor of a focus on patient gratitude and the prevalence of feelings of distress in heart transplant recipients. This practice mirrors the disenfranchisement of grief and death-talk that may take place in clinical heart transplantation work. Indeed, before transplant and during end stage heart failure, patients must prepare for the possibility of death, are supposed to have conversations with their loved ones and clinical teams about how they want those deaths to unfold and yet, the possibility of extended life through heart transplantation takes center stage in the heads and hearts of patients and clinicians alike. How does a clinician proceed? Similarly, how does one take up the equally troubling idea that patients may be experiencing anticipatory grief for the donor, someone they have never and will never know? This study suggests this kind of grief is worthy of further inquiry for clinicians who play a role in allowing, managing and supporting grievability in heart transplantation. Could this kind of anticipatory grief be welcomed into the clinical conversation and attended to as central to a patient’s physical, mental and emotional wellbeing? In the clinical heart transplant literature, there is also a lack of attention paid to complicated grief or the grief that lasts. It has been reported that recipients may try to avoid writing the suggested ‘thank you’ letter to the donor family or avoid the annual donor memorial service.35 Are these recipient responses a key aspect of complicated grief, as are their attempts to ‘know’ the donor through repeated letters to the family? Of concern are the possible long
Table 1 Aspects of complicated grief expressed by post-transplant participants. Aspect of complicated grief
Participant quote
Long lasting and profound grief for the donor
. uhm, I can’t watch any movies that have . [sighing] let’s say true stories which reflect real life [about transplant] and this is very sad. Oh, immediately the tears just . you know, I can’t stop it . (Post-23) . somebody dies to make someone live, you know . quite a . [pause] You think about it all the time . painful for me to think about the donor . I don’t know if it’s pain, its more grief. (Post-9) I ask all the time I’m there if I can meet these people [the donor family] . Yeah, I really love to meet these people. Maybe one day . just to listen their son heart that still beat, that’s the only thing, meet these people. (Post-15) . [pause] Uh, to tell you the truth, I don’t really want to [think about the donor]. I think it’s better that way . (Post-4) [when asked about going to a donor memorial service] No, and I tell you the reason . there’s an issue when you get into [the church], when they have with the donors and all that, uh, [sighs] somehow it . I’m uneasy about it, I’m very uneasy, because [pause] I don’t want to get disappointed . (Post-23)
Persistent thoughts about the deceased donor Strong urge to feel close/meet donor family
Donor/donor family avoidance Donor/donor family avoidance
J. Poole et al. / Heart & Lung xxx (2016) 1e6
term health effects of complicated grief14 for transplant recipients such as stroke, cancer, substance misuse, mental health issues, suicidal thoughts and ironically, worsening heart health. Additionally the length of ‘allowed’ grief time is of issue, yet grieved connection between recipient and donor may remain a complicated one until the recipient dies.34 Complicated grief is a widely contested term in grief and bereavement literature.5,6,11e14,21,63 Some purport that ‘complicated grief’ is itself a by-product of linear grief models5 and attempts to expand psychiatric diagnostic criteria.63 As a result, ‘closure’ becomes a problem when grief fails to reach ‘completion.’5 As the discourse of complicated grief spreads, the grieving may become more distressed if they experience what they determine to be outside the normal realm of grief reactions.5,30 It would appear that labels such as ‘complicated grief’ should be applied with caution.63,64 Such ‘out of the ordinary’ grief may actually be ordinary for all those affected by heart transplant.26,27 In this particular group of grievers, the rates of ‘complication’ may be far higher than 2e3% cited in the recent literature.14 Indeed, given the anticipated and always complex intercorporeality between recipient and donor, it may be perfectly ‘normal’ for potential and actual recipients to be ‘taken up’ with their donors indefinitely. Additionally pressing are the questions about disenfranchised grief. This kind of grief is of particular concern because patients may keep quiet or not acknowledge their pain, disallowing themselves the outward mourning that may be culturally appropriate14 and cathartic. They may also be denying themselves valuable support. Are discourses around linearity, the rhetoric of gratitude and gifting in the heart transplant community partly to blame?64e66 These discourses may pathologize long term grief for donors and silence death-talk. There may be an unexpressed and unintended complicity between medical teams, recipients and their families to de-center unresolvable grief in favor of a focus on life. With such difficulties, it is hard to support those who grieve in anticipation, in complication and in silence. With respect to complicated grief, Shear14 suggests tools such as ‘the brief grief questionnaire,’ psychotherapy and pharmacology. She also outlines core components of talk treatment for complicated grief including building connections and reviewing positive memories of the deceased. Yet how can transplant recipients review these memories when they have never met and may be denied access to the donor family due to law and anonymity policies? As there have been critiques of the steps and stages of grief, critiques have emerged around how to acknowledge and better ‘know’ grief in health work. Interestingly, there has been a shift away from formal grief ‘interventions’4,5,7,8 with some scholars citing expertise as a barrier to meaningful interactions with those who grieve. Instead, some suggest that grievers and those that aim to assist or ‘companion’3 them may embrace storytelling.3,7,8,14,45,67 Qualitative research methods may afford those who grieve a profound way to do just this. With time built in for informal discussion, with open ended questions and with active listening, research interviewers companion those who grieve, capturing not only what they say but also how they express and embody pain.1 By sharing parts of those stories, such researchers may create the possibility for more storytelling67 while validating the grief experience associated with those who wait for and live with heart transplant. Conclusion Results of this secondary qualitative analysis highlight patients’ feelings and experiences of loss, anticipatory grief, complicated grief and disenfranchised grief. For patients waiting for transplant, they may grieve in anticipation not only for the possibility of their
5
own death but also for the death of their potential donor. For heart transplant recipients, this grief for someone who is both connected and yet not known to them may be ever-present, long-lasting and complicated. It may also be unacceptable or disenfranchised, silencing patients and affecting their quality of life. The study suggests all of these forms of loss and grief are worthy of further inquiry by clinicians who play a role in allowing, managing and supporting grievability in heart transplantation. Acknowledgments We acknowledge the thoughtful participation of those involved in our research thus far as well as those who are taking up these ideas in practice and care. We also acknowledge the research support for this aspect of the project provided by a seed grant from the Faculty of Community Services at Ryerson University. References 1. Ross H, Abbey S, De Luca E, et al. What they say versus what we see: ‘hidden’ distress and impaired quality of life in heart transplant recipients. J Heart Lung Transplant. 2010;29:1142e1149. http://dx.doi.org/10.1016/j.healun.2008. 11.187. 2. Mauthner O, Poole J, De Luca E, et al. Life on the heart transplant waiting list: life on hold? Life at all? J Heart Lung Transplant. 2013;32(4S):S196. 3. Wolfelt AD. The Journey Through Grief: Reflections on Healing. Companion Press; 2003. 4. Bonanno GA. The Other Side of Sadness: What the New Science of Bereavement Tells Us about Life after Loss. Basic Books; 2009. 5. Breen LJ, O’Connor M. The fundamental paradox in the grief literature: a critical reflection. OMEGA J Death Dying. 2007;55(3):199e218. 6. Goodkin DL, Frasca A, Molina R, et al. Complicated Bereavement: a commentary on its state of evolution. OMEGA J Death Dying. 2006;52(1):99e105. 7. Hadad M. The Ultimate Challenge: Coping With Death, Dying and Bereavement. Toronto, ON: Nelson Education; 2009. 8. Hollander EM. Am I alright? J Loss Trauma. 2004;9:201e204. 9. Kübler-Ross E, Kessler D. On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. New York, NY: Scribner; 2005. 10. Lewis CS. A Grief Observed. New York, NY: Harper Collins Publishers; 1961. 11. Neimeyer RA. Complicated grief and the quest for meaning: a constructivist contribution. OMEGA J Death Dying. 2005;2(1):37e52. 12. Parkes C. Bereavement: Studies in Grief in Adult Life. Philadelphia: Taylor and Francis; 1996. 13. Rando T. Treatment of Complicated Mourning. Champaign, Illinois: Research Press; 1993. 14. Shear MK. Complicated grief. N Engl J Med. 2015;372(2):153e160. http:// dx.doi.org/10.1056/NEJMcp1315618. 15. Shear MK, Skritskaya NA. Bereavement and anxiety. Curr Psychiatry Rep. 2012;14:169e175. 16. Worden JW. Grief Counselling and Grief Therapy. New York, NY: Springer Publishing Ltd; 2009. 17. Klass D. Grief in an eastern culture: Japanese ancestor worship. In: Klass D, Silverman RP, Nickman SL, eds. Continuing Bonds: New Understandings of Grief. Washington, D.C.: Taylor and Francis; 1996:59e70. 18. Kubler Ross E. On Death and Dying. New York, NY: Macmillan; 1969. 19. Kaba E, Thompson DR, Burnard P, Edwards D, Theodosopoulou E. Somebody else’s heart inside me: a descriptive study of psychological problems after heart transplantation. Issues Ment Health Nurs. 2005;26:611e625. http://dx.doi.org/ 10.1080/01612840590959452. 20. O’Hara K. A Grief Like No Other: Surviving the Violent Death of Someone You Love. New York, NY: Marlowe and Company; 2006. 21. Cleiren M, van Zoelen AJ. Post-mortem organ donation and grief: a study of consent, refusal and well-being in bereavement. Death Stud. 2002;26(10):837e 849. 22. Manuel A, Solberg S, MacDonald S. Organ donation experiences of family members. Nephrol Nurs J. 2010;37(3):229e236. 23. Stouder DB, Schmid A, Ross SS, Ross LG, Stocks L. Family, friends, and faith: how organ donor families heal. Prog Transplant. 2009;19(4): 358e361. 24. Merchant SJ, Yoshida EM, Lee TK, Richardson P, Karlsbjerb KM, Cheung E. Exploring the psychological effects of deceased organ donation on the families of the organ donors. Clin Transplant. 2008;22(3):341e347. http://dx.doi.org/ 10.1111/j.1399-0012.2008.00790.x. 25. Sque M, Payne S, Macleod Clark J. Gift of life or sacrifice?: key discourses to understanding organ donor families’ decision-making. Mortality. 2006;11(2): 117e132. http://dx.doi.org/10.1080/13576270600615260. 26. Soriano-Pacheco JA, Lopez-Navidad A, Caballero F, Leal J, Garcia-Sousa S, Linares JL. Psychopathology of bereavement in the families of cadaveric organ donors. Transplant Proc. 1999;31(6):2604e2605.
6
J. Poole et al. / Heart & Lung xxx (2016) 1e6
27. Shaw R. Perceptions of the gift relationship in organ and tissue donation: Views of intensivists and donor and recipient coordinators. Soc Sci Med. 2010;70(4):609e615. http://dx.doi.org/10.1016/j.socscimed.2009.10.062. 28. Sque M, Long T, Payne S, Allardyce D. Why relatives do not donate organs for transplants: ‘sacrifice’ or ‘gift of life’? J Adv Nurs. 2008;61(2):134e144. http:// dx.doi.org/10.1111/j.1365-2648.2007.04491.x. 29. Sarbin TR. Embodiment and the narrative structure of emotional life. Narrat Inq. 2001;11(1):217e225. http://dx.doi.org/10.1075/ni.11.1.09sar. 30. Carpenter B, Tait G, Quadrelli C. The body in grief: death investigations, objections to autopsy, and the religious and cultural ‘Other’. Religions. 2014;5(1): 165e178. http://dx.doi.org/10.3390/rel5010165. 31. Rady MY, Verheijde JL, Ali MS. Islam and end-of-life practices in organ donation for transplantation: new questions and serious sociocultural consequences. HEC Forum. 2009;21(2):175e205. http://dx.doi.org/10.1007/s10730009-9095-8. 32. Robson NZ, Razack AH, Dublin N. Organ transplants: ethical, social, and religious issues in a multicultural society. Asia Pac J Public Health. 2010;22(3):271e 278. http://aph.sagepub.com/content/early/2010/02/26/10. 33. Rainer JP, Thompson CH, Lambros H. Psychological and psychosocial aspects of the solid organ transplant experience e a practice review. Psychotherapy. 2010;47(3):403e412. http://dx.doi.org/10.1037/a0021167. 34. Corr CA, Coolican MB. Understanding bereavement, grief and mourning: Implications for donation and transplant professionals. Prog Transplant. 2010;20(2):169e177. http://dx.doi.org/10.7182/prtr.20.2.w7727276m86241w4. 35. Poole JM, Shildrick M, De Luca E, et al. The obligation to say ‘thank you’: heart transplant recipients’ experience of writing to the donor family. Am J Transplant. 2011;11(3):619e622. http://dx.doi.org/10.1016/j.healun. 2009.11.172. 36. Corr CA, Coolican MB, Moretti LS, Simon R. Donor families, distinctive secondary losses, and “second death” experiences. Prog Transplant. 2011;21(3): 220e227. 37. Mauthner O, De Luca E, Poole J, et al. The preparation and support of patients through the transplant process: the recipients’ perspectives. Nurs Res Pract; 2012. http://dx.doi.org/10.1155/2012/547312. 38. Mauthner O, De Luca E, Poole J, et al. Heart transplants: Identity disruption, bodily integrity and interconnectedness. Health; 2014. http://dx.doi.org/ 10.1177/1363459314560067. 39. Merleau-Ponty M. The Phenomenology of Perception. London, UK: Routledge and Kegan Paul; 1968. 40. Merleau-Ponty M. The Visible and the Invisible. Evanston, IL: Northwestern University Press; 1968. 41. Kvigne K, Gjengedal E, Kirkevold M. Gaining access to the life-world of women suffering from stroke: methodological issues in empirical phenomenological studies. J Adv Nurs. 2002;40:61e68. http://dx.doi.org/10.1046/j.13652648.2002.02340.x. 42. VanManen M. Modalities of body experience in illness and health. Qual Health Res. 1998;8(1):7e24. 43. Shildrick M. Visceral phenomenology: organ transplantation, identity and sexual difference. In: Zeiler K, Käll LF, eds. Feminist Phenomenology and Medicine. Sunny Press; 2014:47e69. 44. Gudmundsdottir M. Embodied grief: bereaved parents’ narratives of their suffering body. OMEGA J Death Dying. 2009;59(3):253e269. http://dx.doi.org/ 10.2190/OM.59.3.e. 45. Robinson C. Grieving home. Soc Cult Geogr. 2005;6(1):47e60.
46. Giorgi A. The status of Husserlian phenomenology in caring research. Scand J Caring Sci. 2000;14:3e10. 47. Giorgi A. Concerning the application of phenomenology to caring research. Scand J Caring Sci. 2000;14:11e15. 48. Norlyk A, Harder I. What makes a phenomenological study phenomenological? an analysis of peer-reviewed empirical nursing studies. Qual Health Res. 2010;20:420e431. http://dx.doi.org/10.1177/1049732309357435. 49. Shrum W, Duque R, Brown T. Digital video as research practice: methodology for the millennium. J Res Pract. 2005;1:1e19. 50. Gauntlett D, Holzwarth P. Creative and visual methods for exploring identities. Vis Stud. 2006;2:82e91. 51. Pink S. More visualizing, more methodologies: on video, reflexivity and qualitative research. Editor Board Sociol Rev. 2001;49:586e599. 52. Bateson G, Mead M. Balinese Character: A Photographic Analysis. New York: NY: Academy of Sciences; 1942. 53. Collier J. Visual anthropology. In: Wagner JC, ed. Images of Information. Still Photography in the Social Sciences. London, UK: Sage; 1979. 54. Haw K, Hadfield M. Video in Social Science Research: Functions and Forms. New York, NY: Routledge; 2011. 55. Heath C. The analysis of activities in face to face interaction in using video. In: Silvermann D, ed. Qualitative Research: Theory, Method and Practice. 2nd ed. London, UK: Sage Publications; 1998:183e200. 56. Heath C. Demonstrative suffering: the gestural (re)embodiment of symptoms. J Commun. 2002;52:597e616. http://dx.doi.org/10.1111/j.1460-2466.2002. tb02564.x. 57. Heath C, Hindmarsh J, Luff P. Video in Qualitative Research; Analyzing Social Interaction in Everyday Life. Los Angeles, CA: Sage Publications; 2010. 58. Shear MK, Simon N, Wall M, et al. Complicated grief and related bereavement issues for DSM-5. Depress Anxiety. 2011;28(2):103e117. http://dx.doi.org/ 10.1002/da.20780. 59. Bush NJ. Post-traumatic stress disorder related to cancer: Hope, healing, and recovery. Oncol Nurs Forum. 2010;37(5):E331eE343. http://dx.doi.org/10.1188/ 10.ONF.E331-E343. 60. Doka KJ. Disenfranchised Grief: Recognizing Hidden Sorrow. Lexington, MA: Lexington Books; 1989. 61. Doka KJ. Ethics, end-of-life decisions and grief. Mortality. 2002;10(1):83e90. 62. Gill P, Lowes L. Renal transplant failure and disenfranchised grief: Participants’ experiences in the first year post-graft failure e a qualitative longitudinal study. Int J Nurs Stud. 2014;51(9):1271e1280. http://dx.doi.org/10.1016/j. ijnurstu.2014.01.012. 63. Prigerson HG, Maciejewski PK. A call for sound empirical testing and evaluation of criteria for complicated grief proposed for DSM-V. OMEGA J Death Dying. 2006;52(1):9e19. http://dx.doi.org/10.2190/ANKH-BB2H-D52N-X99Y. 64. Poole J, Ward J. Breaking open the bone: storying, sanism and mad grief. In: LeFrancois B, Menzies R, Reaume G, eds. Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholars Press; 2013: 94e104. 65. Shildrick M. Hospitality and ‘the gift of life’: reconfiguring the other in heart transplantation. In: Gonzalez-Arnal S, Jagger G, Lennon K, eds. Embodied Selves. UK: Palgrave Macmillan; 2012:196e209. 66. Lamanna M. Gifting and getting: altruism and exchange in transplantation. J Med Humanit. 1997;18:169e192. 67. Frank AW. The Wounded Storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press; 2013.