Abstract
Abstract
Background:
Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers.
Objective:
Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP).
Design:
Semistructured qualitative interviews were conducted with 61 bereaved caregivers.
Subjects:
Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures.
Approach:
In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data.
Results:
Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes “contact reflects caring,” “contact offers support,” and “contact facilitates closure” were prominent among those who were contacted. “Contact is a courtesy,” “contact is not always necessary,” and “caregiver-initiated contact” were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported.
Conclusions:
Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers.
Introduction
F
Several clinical practice guidelines and policies have incorporated bereavement support into palliative and hospice care programs.12,13 Despite such emphasis, the bereavement care practices of cancer physicians, including palliative care physicians and oncologists, remain variable.14–16 Although the majority of healthcare staff who provide palliative care regard bereavement follow-up as integral to their practice, 17 only a minority routinely initiate contact with caregivers after death.14,15,18
Previous qualitative research exploring the experiences of bereaved caregivers with bereavement follow-up has focused on caregivers of patients who died in a palliative care unit19–21 or who received home palliative care. 21 These studies highlighted caregivers' perceived needs for contact, and found that the majority desired communication throughout the care trajectory, as well as after patient death. Most of these studies were conducted in facilities that offered routine bereavement support to all caregivers.19–21 The comparative perspectives of those who have or have not received bereavement follow-up remain less well described.
In this study, we used semistructured interviews to examine the experiences of bereaved caregivers of patients with advanced cancer who had participated in a randomized controlled trial (RCT) of early palliative care versus standard oncology care. 22 This study was part of a larger qualitative study of caregivers, which aimed to explore their experiences of caring for patients with advanced cancer and their perceptions of the bereavement process. Our aim in the current study was to explore the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP).
Methods
Methodology
Our study entailed thematic content analysis that was informed by grounded theory methods. Grounded theory has several traditions,23–25 all of which use the method of constantly comparing data to explore variations and similarities, form categories, and produce theory. 26 Grounded theory methods can serve as guidelines to structure the research process, whether or not theory development is the ultimate goal, offering “tools to get at varied constructions or competing definitions of the situation.” 23 Our theoretical stance is constructivist, in that we acknowledge that our thematic categories are constructed by researchers out of subjective accounts by participants, rather than “discovered” out of the data. 23
Setting
The study was conducted at the Princess Margaret Cancer Centre, a tertiary cancer centre and part of the University Health Network (UHN) in Toronto, Canada. Participants were bereaved caregivers of patients who had participated in an RCT of early palliative care 22 and in a follow-up quantitative study of caregiver well-being during bereavement (in progress). Patients in the intervention arm received a four-month early palliative care intervention consisting of consultation in an outpatient palliative care clinic, routine telephone follow-up by a palliative care nurse, monthly clinic follow-up, and a 24-hour on-call service. 27 Patients in the control arm could receive early palliative care on request. Ethics approval for the larger study and for this qualitative substudy was obtained from the UHN Research Ethics Board.
Participants
Bereaved family caregivers were approached by mail and/or telephone one to five years after the patient's death, to participate in the quantitative and qualitative bereavement studies. Caregivers were at least 18 years old, were able to provide informed consent, and were either identified as the primary caregiver by the patient during the RCT, or listed in the hospital electronic patient record as the patient's primary caregiver. A total of 157 caregivers completed the quantitative bereavement study; a subset was approached to complete qualitative interviews. Purposive sampling was conducted with the aim of including similar numbers of caregivers from each trial arm; high and low scores on the Quality of Dying and Death questionnaire; males and females; and those younger or older than 60 years of age.28,29
Interviews
The semistructured interviews lasted approximately two hours and were conducted in person in a private setting or over the telephone. Trained research personnel conducted the interviews, which were audiotaped, transcribed, and analyzed. 25 Open-ended questions were posed regarding caregivers' experiences with bereavement follow-up. Caregivers were asked whether they received any contact after the patient's death from any HCP who had been involved in the patient's care, regardless of discipline or location of care. Those who did not receive contact were asked if they would have liked to receive it; those who had received some form of contact were asked about its impact, if any. Following the interview, bereavement support in the form of a pamphlet that highlighted available resources was offered, if requested or deemed appropriate.
Data analysis
All interviews were transcribed using a professional transcription service; transcripts were verified by two independent raters. M.M., S.M., N.S., A.P., N.K., and C.Z. reviewed and analyzed transcripts and participated in discussions at weekly meetings. An inductive, constant comparison method was used to code the data pertaining to bereavement contact.23–25 Instances of postdeath contact and descriptions of its impact were located and systematically verified. Theoretical sampling of data informed the development of thematic categories. 24 Initial conceptual categories and codes were refined and then grouped into broader themes. 24 We also looked for deviant cases that were counter to emerging themes, to refine the categories. 30 An iterative process was used until theoretical saturation was reached. 25 To ensure rigor and minimize coder bias, data samples, emerging codes and categories, and written summaries were reviewed at weekly team meetings.
Results
Of the 101 caregivers approached for qualitative interviews, 61 consented and completed these (30 intervention, 31 control). Common reasons for declining included a lack of interest or feeling that the interview would be emotionally burdensome. Ten who had initially consented could not find a suitable time, or withdrew consent. During the interview, participants were asked whether they had received any bereavement contact from HCP. One caregiver in the intervention arm was not asked about contact and was excluded from analysis.
Characteristics of the 60 participants in the final sample are reported in Table 1. Before death, almost all patients (98%) from both trial groups received some form of palliative care. Fifty percent (30/60) of bereaved caregivers received some form of contact, 40% (24/60) received no contact, and 10% (6/60) could not recall whether contact was received (Table 2). Fourteen participants initiated contact with HCP; of these, five also independently received some form of contact from the hospital, hospice, or HCP. Contact initiated from HCP was most often from palliative care physicians or other physicians at the institution where patient care had taken place, and was usually in the form of a phone call or written note (Table 3).
Other ethnicity includes those who identified as East/Southeast Asian, South Asian, Canadian, or mixed ethnicity.
Other family includes sister-in-law and girlfriend.
Thirty-five patients were admitted to palliative care units (58.3%), 50 patients attended an outpatient palliative care clinic (83.3%), 32 (53.3%) patients were followed by a home palliative care team. These numbers are not mutually exclusive.
Other includes various bereavement groups.
Numbers are not mutually exclusive, that is, some caregivers had multiple sources of counseling.
SD, standard deviation.
One female caregiver was not asked about contact and was excluded from analysis.
N = 30; numbers are not exclusive, as caregivers may have received several forms of contact from more than one source.
Family physician (4), oncologist (4), surgeon (3), psychiatrist (1)
HCP, healthcare provider.
There was no difference between trial arms in the number of participants contacted by HCP (15/29, intervention arm; 15/31, control arm), nor in the themes that emerged; however, thematic differences emerged between those who were or were not contacted. Overall, those who received contact described its benefits, while those who did not receive it had various reactions, including rationalizing reasons for its absence, reflecting on its necessity (or lack thereof) and initiating contact themselves. Specifically, the themes “contact reflects caring,” “contact offers support,” and “contact facilitates closure” were prominent among those who were contacted; “contact is a courtesy,” “contact is not always necessary,” and “caregiver-initiated contact” were prominent among those who were not contacted.
Contact reflects caring
Participants felt that contact by HCP reflected caring, honoring the patient's memory: “you care enough, you remembered enough, to say ‘I remember this person’” (C-331cc; Table 4). Contact reflected a personal connection that extended beyond clinical responsibilities: “It makes you feel that you were actually a person and not just part of someone's job” (C-462ic). For many, this signified that the patient was recognized as an individual, rather than being “just a number.” The personal connection was well-received irrespective of who was making contact: “It didn't really matter who did it” (C-517ic). For example, many were contacted through hospital memorial service invitations or through cards.
cc: control arm, contacted.
ic: intervention arm, contacted.
cn: control arm, not contacted.
cr: control arm, did not recall if contact was made.
Contact offers support
In addition to reflecting caring, contact was regarded as offering support (Table 4). In some instances HCP did this actively: “he called me a couple times afterwards, and e-mailed me” (C-034cc), while others “left the door open… ‘if you need me, I'm here’” (C-633ic). The latter often occurred in the form of a card providing contact information so that caregivers could get in touch, if necessary. Contact from HCP who had provided end-of-life care also provided an opportunity to debrief, particularly if the death was unexpected: “She wanted to… make sure I was okay, explain to me maybe how things happened, why she went so quickly, some explanations for it. Because I think [she] knew that I'm the type of person I want answers” (C-273ic).
Contact facilitates closure
Another prominent theme that arose among those who were contacted was that contact provided a meaningful conclusion to a relationship with HCP: “a finish to it or an ending of it” (C-156cc; Table 4). Correspondingly, some caregivers who were not contacted or who did not recall receiving contact indicated that it was “a very abrupt cutoff” (C-081cn), or that it “would have been nice just to tie up the bow and the loop kind of thing” (C-325cr). Participants particularly appreciated contact from HCP who had provided care earlier, but were not present at the time of death. In addition to being perceived as caring, this provided caregivers with a welcome opportunity to share what happened at the time of death: “It was important for me to let them know the outcome because so often in health care, we don't see the end of the story” (C-284ic).
Contact is a courtesy
The theme of contact as a courtesy arose mostly in those who were not contacted (Table 5). Several participants stated that they would have appreciated a connection with the team or with HCP caring for their loved one: “Just a little note or a card, I think… It seems silly, but it would matter” (C-269cc). Caregivers tended to state that they understood that the physicians were busy and even to suggest that their own expectations of contact might be unrealistic, but that they would nevertheless have appreciated some form of contact: “…at least someone at [Hospital] should have on behalf of the oncologist, on behalf of the team…” (C-041cn). Most considered contact a form of politeness, while some suggested that it was an ethical responsibility. Conflict was evident between recognizing other competing responsibilities of HCP, but nonetheless wanting their loved one's death to be acknowledged.
cc, control arm, contacted.
cn: control arm, not contacted.
in: intervention arm, not contacted.
ir: intervention arm, did not recall if contact was made.
Contact is not always necessary
A contrasting theme that was prominent among those who were not contacted, or who did not recall bereavement contact, was that such contact was not always necessary (Table 5). These participants often stated that they had neither expected it nor noted its absence. They justified lack of contact, indicating that physicians “don't have time to be calling everyone” (C-041cn) and that a physician's role was “dealing with the living” (C-013cn); “He was the patient, not me” (C-629cn). Others felt contact might be helpful only in certain circumstances: “no need to reach out to us, but maybe other people… none of us was falling apart” (C-029in). If care was still being provided to the caregiver by a member of the healthcare team, then contact by other members of that team was deemed unnecessary.
Two caregivers who were contacted also stated that additional contact from the hospital was superfluous, as they already had adequate support. One had ample support from other sources, including the family doctor, hospice, and funeral home: “I didn't need it because I already had it” (C-478cc). The other had contact and support from a home care nurse and chaplain and did not perceive that additional contact would be beneficial from hospital HCP with whom she had no strong relationship: “I didn't really feel close, that there was a need…” (C-507cc).
Caregiver-initiated contact
A subset of participants initiated contact themselves to thank the healthcare team for the care provided (Table 5). Some also received contact from HCP, either in return or by different HCP; for others, the only contact was self-initiated. If contact was self-initiated, a reply was appreciated and some expressed regret that this did not occur: “I would've liked to have touched base with the nurses and just said ‘thank you’” (C-144in). Contact was also initiated for practical reasons, such as returning unused medication, informing the HCP of the patient's death, and preventing inadvertent calls by HCP who were unaware of the patient's death. In cases where the latter did occur, it was perceived as distressing: “…getting a call or reminder of an appointment, when they didn't check the records to find out, that was hard” (C-594cn).
Discussion
In this study, we describe the experiences of bereaved caregivers with contact by HCP after the death of a patient with advanced cancer. Although intervention arm patients had participated in a four-month trial of early palliative care, almost all in both trial arms eventually received palliative care, and there were no thematic differences between arms. There were, however, thematic differences among those who were or were not contacted by HCP. Overall, contact was appreciated and considered to be beneficial by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. Those who were contacted tended to perceive contact as caring and supportive, and as facilitating closure, while those who were not contacted tended either to equate contact with courtesy (implying that lack thereof expressed the opposite) or to regard it as unnecessary. Some participants initiated contact themselves, mainly to express thanks and to inform HCP about the patient's death, and appreciated reciprocation.
Only half of caregivers in both trial arms reported that they received bereavement contact. Although quantitative comparisons were not the aim of this qualitative study, these results correspond to those of physician surveys, in which self-reported bereavement contact has ranged from 33% to 75%.14–16,18 Palliative care physicians, 14 as well as medical oncologists 15 are more likely to report bereavement contact. In the current study, palliative care physicians were most frequently identified as the HCP who made contact; however, this still only occurred in a minority. Previously identified barriers to initiating bereavement contact include lack of time, inadequate bereavement training, uncertainty about bereaved caregivers' needs, lack of knowledge about the patient's death, and uncertainty about whom to contact.14,15,31 Lack of institutional support and financial resources may also play a role.18,31
In our study, those who received contact expressed positive sentiments, perceiving it as caring and supportive. Similarly, in a study of the impact of a supportive telephone care by a nurse, 94% of those who received the call found it helpful, and 98% thought the intervention should be continued. 32 Although some caregivers in our study who did not receive contact were ambivalent about its necessity, others considered it to be a courtesy or even an ethical obligation. Importantly, no caregivers reported a negative impact from bereavement contact. Bereaved caregivers may experience a “void” due to the conclusion of care after a patient's death. 33 Contact offers an opportunity to discuss what happened at the end of life,20,34 and facilitates closure of the therapeutic relationship for patients as well as HCP.17,31,35
A subset of participants in our study initiated contact with HCP themselves to express thanks, to inform HCP who may not have been aware of the death, or to return medications. Such caregiver-initiated contact cannot be relied upon to identify caregivers in need, however, as those experiencing high levels of distress may be less likely to seek support. 36 On the contrary, only half of bereaved caregivers express a need for follow-up after patient death, 21 and it may be difficult to predict who will benefit.12,37 A routine call or condolence card may provide a systematic means to provide information about counseling and other supportive measures. 38 Although further research is required regarding the benefit of more complex interventions for those with bereavement-related distress,12,37,39 this does not preclude also uniformly offering condolences through a card or phone call.
The strengths of our study include the relatively large qualitative sample, including equal proportions of caregivers who did or did not receive bereavement contact. Limitations of our study include its generalizability, due to the purposeful sampling of caregivers of patients from a trial at a single cancer center. Although we included caregivers at various stages of bereavement, recruitment occurred one to five years after death, and the long interval for some might have limited their recall. This range was due to the fact that this study was undertaken after the related RCT was concluded; as recruitment for the RCT occurred over several years, patients recruited earliest had died years before the qualitative study began. Finally, we acknowledge that the categories that were generated by our analysis are constructions by researchers using qualitative data, rather than objective accounts of reality.
In conclusion, bereavement contact was perceived by bereaved caregivers as being supportive, offering closure, and providing acknowledgement of the patient's personhood. Although not all caregivers expected this contact, all who received it appreciated it, and none suffered from it. Some who did not receive contact rationalized that it was unnecessary, but others regretted its absence. These data support the routine integration of bereavement contact into supportive care for caregivers.
Footnotes
Acknowledgments
The authors thank the patients and caregivers who have participated in this study. We also thank Jennifer Kotler for assisting with recruitment of participants and conducting interviews. This research was funded by the Canadian Cancer Society (Grant No. 700862; C.Z.) and the Ontario Ministry of Health and Long-Term Care. Dr. Zimmermann is supported by the Rose Family Chair in Supportive Care, Faculty of Medicine, University of Toronto.
Author Disclosure Statement
No competing financial interests exist.