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. Author manuscript; available in PMC: 2020 Aug 19.
Published in final edited form as: Palliat Med. 2020 Feb 5;34(3):367–377. doi: 10.1177/0269216319900301

Regret and Unfinished Business in Parents Bereaved by Cancer: A Mixed Methods Study

Wendy G Lichtenthal 1,2, Kailey E Roberts 1, Corinne Catarozoli 2, Elizabeth Schofield 1, Jason M Holland 3, Justin J Fogarty 1, Taylor C Coats 1, Lamia P Barakat 5, Justin N Baker 4, Tara M Brinkman 4, Robert A Neimeyer 6, Holly G Prigerson 2, Talia Zaider 1,2, William Breitbart 1,2, Lori Wiener 7
PMCID: PMC7438163  NIHMSID: NIHMS1609922  PMID: 32020837

Abstract

Background

Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited.

Aim

The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief.

Design

This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items.

Setting/participants

The multisite study took place at a tertiary cancer hospital and paediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior.

Results

Results showed that 73% of parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p≤.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms.

Conclusions

Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.

Keywords: regret, paediatric, neoplasm, grief, caregivers, decision making

Many parents bereaved by cancer anguish over decisions they made about their child’s care.1 Their struggles have unique implications for the practice of paediatric palliative care. Parents in such an intensive caregiving role are vulnerable to regret, defined as negative emotion related to a belief that one could have done something differently in the context of the relationship with the deceased, decisions made during caregiving, or at the end of life.2, 3 Regret can be viewed as a byproduct of hindsight bias, the tendency to believe that one should have behaved differently in the past because they are dissatisfied with the outcome of a situation.4–6

While there is a growing literature on regret in bereavement more broadly speaking, research on regret in the context of paediatric cancer is surprisingly limited.1 Studies have shown that caregivers of adult patients commonly experience regret, with prevalence estimates ranging from 38% to 71%.3, 7–9 Regrets take their toll. Regret-related intrusive thoughts in bereaved caregivers of adult cancer patients have been associated with lower quality of life, prolonged grief (characterized by unremitting, debilitating grief symptoms), and depressive symptoms.3, 7, 8, 10–13 Regret appears more common among bereaved spouses with chronic grief (synonymous with prolonged grief),14 and when regret worsens over time, levels of grief tended to be higher.9

The construct of regret overlaps, yet is distinguished from, the concept of unfinished business, which refers to unresolved aspects of the relationship with the deceased such as conflict or something important not having been communicated.3, 9 An individual may regret behaviors that result in a sense of unfinished business with the deceased. Unfinished business may be less common than regret, with one study reporting that 43% of bereaved individuals experienced such lack of resolution.15 The prevalence of unfinished business tends to be higher among those bereaved by violent causes, while regret is relatively stable across all causes of death.3 However, similar to regret, unfinished business has been associated with pathological grief outcomes regardless of loss type.15

The few studies on regret and related experiences in paediatric cancer have important implications.1 One well-known Swedish study found that of the 66% of parents who did not speak to their terminally ill children about death, 27% regretted not having done so.16 Further, over half of parents reported protracted distress about their child having a difficult moment of death17 and related guilt.6 Research has also demonstrated that regret appears less likely when parents receive detailed prognostic information, when they trust their oncologist, and when they feel satisfied with their role in treatment decision-making.18

Although these studies offer meaningful contributions, research on the prevalence and nature of regret and unfinished business among bereaved parents is lacking. We expect that regret may be especially prevalent in parents bereaved by cancer because, according to Bowlby,19, 20 the parent has a strong drive to care and create a “safe haven” for the child in the parent-child attachment system. Illness and the eventual death of a child is the ultimate threat to this system. We therefore examined regret and perceptions of unfinished business in parents who lost a child to cancer, additionally investigating associations between these experiences and perceptions of caregiving and prolonged grief symptoms.

Methods

Design and Setting

This was a multisite, cross-sectional, mixed methods study taking place at Memorial Sloan Kettering Cancer Center (MSK), a tertiary cancer center, and the National Cancer Institute (NCI) Pediatric Oncology Branch, a paediatric cancer clinical research center, as part of a larger study designed to understand bereaved parents’ needs to inform intervention development.

Participants

The sample included 118 parents (mothers=82, fathers=36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years before participation. We chose this child age range to include emerging young adults21, 22 who are often diagnosed with cancer during their childhood or adolescence, commonly survive at least 5 years post-diagnosis,23 may have delays in transitioning to independence,24, 25 and significantly involve their parents in their cancer care. Given this and prior work expanding to age 25,25, 26 we believed it was important to include children above the legal adult age of 18.27

Data Collection

Parents were invited to participate by letter and telephone. Interested parents were verbally consented to this MSK and NCI Institutional Review Board-approved study (MSK protocol #09–107, approved August 2009; NCI protocol #11-C-0132, approved March 2011). Parents could complete questionnaires on the telephone with a research assistant, on their own, or in person. Data were collected between December 2009 and September 2012.28

Measures

The presence of regret was assessed with the item, “Do you regret any of your actions or choices that occurred while providing care to your child when he/she was ill?” If yes, parents were asked to provide an example of their most troubling regret and to rate their distress about this regret on a 10-point scale (10=most distressed), referred to as regret-related distress. The presence of unfinished business was assessed by asking, “Do you feel that anything was unfinished, unsaid, or unresolved in your relationship with your child?” If yes, parents were asked to provide an example of their most troubling source of unfinished business and to rate their distress about this on a 10-point scale (10=most distressed), referred to as unfinished business-related distress. These items with were developed by authors J.M.H. and W.G.L. to be face valid and consistent with current theoretical understandings of regret and unfinished business.3, 9, 15 They have demonstrated concurrent validity in prior research.15

To assess caregiving experiences during the child’s illness, the 25-item valid and reliable Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC)29 self-reported questionnaire was administered. Two subscales are reported: Caregiver Distress, which measures guilt, worry, anxiety, and depression associated with caregiving; and Family Well-being, which measures family problem-solving, sharing of emotions, closeness, conflict, fears, and coping. To assess caregiver experiences retrospectively, items were modified to past tense. Cronbach’s alpha values of these subscales in the current sample were .72 and .84, respectively. The 13-item PG-13,30 a widely used, reliable, self-report measure of prolonged grief was administered to assess prolonged grief symptoms (e.g., yearning, identity disturbance, numbness). Scores range from 12 to 53, with a higher score indicating more prolonged grief symptomology. Cronbach’s alpha in the present sample was .87.

Data Analysis

Statistical analyses were performed using IBM SPSS version 2531 and SAS software version 9.4. Copyright © 2013, SAS Institute Inc., Cary, NC, USA. Prior to analysis, data quality was assessed (see online supplement for data coding procedures). Pairwise deletion was used to handle missing values so that available sample sizes are maximized for each comparison. Descriptive statistics were calculated to describe sample demographics and variables of interest. Parametric correlational analyses, t-tests, and chi-square tests were used to characterize associations between distress related to regret/unfinished business (continuous variable) and prolonged grief, caregiving appraisals, parent gender, child’s age at death, time since loss, and time from child’s diagnosis to death. Hierarchical Linear Modeling (HLM) incorporating a per-family intercept term was utilized to confirm significance in the presence of correlated outcomes for parents of the same child and to control for relevant covariates in analyses of regret-related distress. HLM was performed using SAS Proc Mixed. Linear regression was utilized to confirm significance when controlling for covariates in the analyses of unfinished business-related distress given there was only one parent dyad reporting this type of distress.

Parents’ written responses or transcription of their oral responses about their regrets and unfinished business were entered verbatim into SPSS. These de-identified responses were coded by teams of two, both led by a clinical psychology doctoral student [K.E.R.] extensively trained in qualitative methods and overseen by W.G.L. Other coders included a clinical psychology doctoral student with experience working with medically ill and bereaved populations [C.C.] and a Master’s level research assistant with experience working in psychiatric research [T.C.C.]. Thematic analysis using a constructivist epistemology was employed.32–34 Coders independently reviewed the 77 regret responses and 35 unfinished business responses to generate preliminary categories, and then together inductively developed coding taxonomies consisting of 10 regret and 7 unfinished business categories. They independently coded the responses using the taxonomies, and then met to come to consensus using a reflexive approach. SPSS31 was used to organize coding. Inter-rater reliability was 91% agreement, and coding discrepancies were discussed in depth until consensus was achieved. “The Good Reporting of a Mixed Methods Study” was used to guide the description of the methods, data analysis, and findings.35

Results

Demographics

Detailed information on screening and study enrollment of the parents is described elsewhere.28, 36 Most of the 118 parents identified as mothers (69%; n=82) who were on average 2.4 (SD=1.6) years from their loss (Table 1).

Table 1.

Participant Demographics and Background Characteristics

All Parents (N=118)
n (%)
Gender (Female) 82 (69)
Race & Ethnicity
 White 97 (82)
 Black 11 (9)
 Asian 4 (3)
 Hispanic 4 (3)
 Other 2 (2)
Marital Status
 Married or Living with Partner 97 (82)
 Divorced or Widowed or Separated 15 (13)
 Never Married or Unmarried or Unspecified 6 (5)
Child’s Diagnosis
 Sarcoma 47 (40)
 Neuroblastoma 22 (19)
 NeuroOnc 27 (23)
 Leukemia/Lymphoma 17 (14)
 Other (liver, gland, skin) 5 (4)
Parent Mental Health Service Use (Prior)
 Talk Therapy 39 (33)
 Spiritual Services 38 (32)
 Medication 29 (25)
 Support Group 17 (14)
 Missing 1 (1)
Parent Mental Health Service Use (Current)
 Talk Therapy 26 (22)
 Spiritual Services 27 (23)
 Medication 24 (20)
 Support Group 16 (14)
 Missing 3 (3)
Mean (SD)
Parent Age 47.9 (7.9)
Child’s Age at Death 13.4 (7.1)
Time Since Loss of Child (years) 2.4 (1.6)
Time from Child’s Diagnosis to Death (years) 3.2 (2.8)
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Quantitative Examination of Regret

Of the 118 parents in the sample, 116 had usable responses to the regret assessment. Of these 116, 73% (n=85) reported the presence of regret about actions or choices they made while caregiving for their child. Mothers were more likely than fathers to report regret, χ2(1, N=116)=4.51, p=.03 (Figure 1). Age of deceased child was significantly associated with the presence of regret (p=.03), but time since the loss occurred was not. For parents who reported the presence of regret, the average age of their child at time of death was 12.6 years, compared to 15.7 years for those who reported no regret. Fifty-nine percent of those endorsing regret had used mental health services prior to the death (compared to 29% of those with no regret, p=.005), and 45% with regret were currently using (compared to 34% of those with no regret, p=.32).

Figure 1. Endorsement of presence of regret among mothers and fathers.

Figure 1.

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Note. Percentages of total sample of 116 bereaved parents (mothers = 81, fathers = 35) who endorsed regret.

Parents were also asked the extent to which their regrets were distressing. On average, they reported moderate levels of regret-related distress (M=6.7 out of 10, SD=2.8), which unlike the presence of regret, was not significantly related to child’s age. Greater regret-related distress was associated with higher PG-13 scores (r=.39, p=.002). Statistical significance of the association between regret-related distress and PG-13 scores was maintained (β=1.20, p=.04) when controlling for partner effects, gender, and age of child through HLM analysis (n=64 parents from 57 families, i.e., 7 parent dyads plus 50 individual parents). Greater regret-related distress was also related to guilt experienced at the time of caregiving (r=.27, p=.03) and with the FACQ-PC Caregiver Distress Scale (r=.34, p=.01). Regret-related distress was inversely associated with the FACQ-PC Family Well-Being Scale (r=−.44, p<.001). See Table 2. Statistical significance of the associations with Caregiver Distress (β=0.97, p=.048) and Family Well-Being (β=−1.34, p=.02), but not guilt at the time of caregiving, was confirmed when controlling for partner effects, gender, and age of child through HLM analysis.

Table 2.

Bivariate correlations for continuous measures

Parent Age Child Age at Death Time Since Loss Time from Child’s Diagnosis to Death PG-13 Total Score Unfinished Business-Related Distress Regret-Related Distress FACQ-PC Caregiving Distress FACQ-PC Family Well-Being FACQ-PC Guilt
Parent Age - 0.68*** 0.13 0.34** −0.03 −0.29 0.07 0.03 −0.09 −0.16
Child Age at Death - −0.11 0.39*** 0.10 −0.12 0.14 0.07 −0.25** −0.10
Time Since Loss - 0.27 −0.26** −0.10 −0.12 −0.15 0.09 −0.15
Time from Child’s Diagnosis to Death - −0.23* −0.20 0.00 −0.06 −0.14 0.04
PG-13 Total Score - 0.38* 0.39** 0.38*** −0.41*** 0.28**
Unfinished Business-Related Distress - 0.48** 0.46** −0.11 0.56**
Regret-Related Distress - 0.34** −0.44** 0.27*
FACQ-PC Caregiving Distress - −0.25** 0.77***
FACQ-PC Family Well-Being - −0.17
FACQ-PC Guilt -
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Note.

*

indicates statistical significance at the 0.05 level

**

indicates significance at the 0.01 level, and

***

indicates significance at the 0.001 level.

PG-13 = Prolonged Grief-13. FACQ-PC = Family Appraisal of Caregiving Questionnaire for Palliative Care. Regret-related distress was reported by n=64 parents from 57 families (i.e., 7 parent dyads plus 50 individual parents) and distress related to unfinished business by n=35 parents from 34 families (i.e., only 1 parent dyad plus 33 individual parents).

Qualitative Examination of Regret

Qualitative analysis of data revealed most common regrets centered on treatment decisions (26%; percentages are out of total number of qualitative responses on regret provided, n=77). An analysis of subthemes revealed 45% of these regrets focused on not pursuing additional, different, or more intensive medical treatments (e.g., “Always wonder if we had followed a different protocol, would he still be alive today”). Examples of other treatment-related regrets included parents wishing they had chosen an additional integrative treatment (15%; e.g., “I regret not switching sooner and more completely to an anti-cancer diet at home”) and wishing for better pain management (10%). Only two parents expressed regret about intensive treatment (e.g., “making him receive radiation and another MIBG treatment when they no longer worked or were of little benefit”). Other sources of regret included wishes to have conducted more research or asked more questions (16%), not to have delayed diagnosis (16%; e.g., not seeking multiple opinions), to have behaved differently with their child (13%; e.g., not expressing anger), to have made more of the time they had together (9%; e.g., “I was always looking for the next treatment-I wish I would have spent more time with him instead of searching for help”), to have attended more to quality of life (8%), and to have attended more to caring for other children or family members (5%). See Table 3. Of note, despite not endorsing regret or regret-related distress for the quantitative questions, 6 participants described regrets in their qualitative responses.

Table 3.

Categories of regret described by parents

Regret Theme Coding Definition Total Responses n (%)
n = 77
Treatment-related decisions Regrets related to treatment decisions, including wishes to have chosen alternative treatment options (e.g., other clinical trial or adjuvant nutrition plan), leaving the hospital, wound and pain management 20 (26)
Conducted research Wish to have conducted more research or asked more questions about treatment options 12 (16)
Diagnosis Regrets related to timing of diagnosis (e.g., not catching it earlier) or not seeking multiple opinions 12 (16)
Angry or disciplinary interactions with child Regrets related to angry interactions with child or disciplining the child 10 (13)
Made more of time with child A wish to have made more of the time with the child (better quality time) 7 (9)
Quality of life Wish to have attended more to quality of life but not in lieu of medical treatments 6 (8)
Caring for other family members Regrets related to not attending as much to needs of other children or family members during caregiving 4 (5)
Not obtaining child’s opinion Regret related to not seeking child’s opinion or input on their care 3 (4)
Not saying goodbye Regret related to not having said goodbye to child 2 (3)
Lack of prognostic understanding Regret related to not having a better awareness of prognosis 1 (1)
Other Response unclear and therefore difficult to categorize 2 (3)
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Note. Numbers in this table reflect the frequencies and percentages of parents who endorsed a theme, with 77 parents providing a response that characterized their regret(s). Themes were not mutually exclusive; two parents endorsed more than one theme, and therefore percentages may be over 100%.

Quantitative Examination of Unfinished Business

Of the 118 parents in the sample, 90 parents had usable responses to the unfinished business assessment. Of these 90, 33% (n=30) reported the presence of unfinished business with their child. Mothers were more likely than fathers to report unfinished business, χ2(1, N=90)=4.68, p=.03 (Figure 2). Forty-five percent of parents who reported unfinished business had used mental health services prior to the death (compared to 57% of those who did not report unfinished business, p=.29), and 59% reporting unfinished business were currently using mental health services (compared to 32% of those who did not report unfinished business, p=.019).

Figure 2. Endorsement of the presence of unfinished business among mothers and fathers.

Figure 2.

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Note. Percentages of total sample of 90 bereaved parents (mothers = 65, fathers = 25) who endorsed unfinished business.

Greater unfinished business-related distress was associated with more prolonged grief symptoms (r=.38, p=.03), guilt (r=.56, p≤.001), and the FACQ-PC Caregiver Distress Scale (r=.46, p=.006) but not with the FACQ-PC Family Well-Being Scale (p>.10). See Table 2. Significant associations of prolonged grief (β=0.13, p=.02), guilt (β=1.34, p<.001), and caregiver distress (β=1.70, p=.003) with unfinished business-related distress were maintained when controlling for gender, time since loss, and child’s age using linear regression (n=35 parents from 34 families, i.e., only 1 parent dyad plus 33 individual parents).

Qualitative Examination of Unfinished Business

Among the 35 parents who described their most troubling source of unfinished business, the most commonly described theme was not having had discussions with their child about death (9 of 35 or 26%). For example, one parent shared her concern that she did not sufficiently prepare her son for death: “I wished I could of talked to him about death…I asked him if he was scared- he said ‘about dying?...no not for me.’ I never got to finish or ask him about what he meant. I felt like a mother should protect her child and ‘go’ before a child to prepare…and I couldn’t help in this matter.” Similarly, another parent described wondering if she should have created more space for her son to process his emotions about death: “Also, I’ve never asked him if he was afraid of his illness and if he was afraid of what might happen to him. Maybe he wanted to talk about it, but I always assured him that everything is going to be all right, he will live long and healthy life. I hope he forgave me now.” Other unfinished business themes included: feeling they could have shown more expressions of love or support (23%), that their child had unfulfilled experiences (17%), a lack of resolution in how they attended to their child’s needs (11%), a lack of resolution for not having said goodbye (9%), and that there were unasked questions (9%). Four participants who did not respond to the quantitative unfinished business questions provided a qualitative response to the open-ended unfinished business item. See Table 4. There were no significant gender differences in the proportions of themes of regret and unfinished business reported (ps >.05).

Table 4.

Categories of unfinished business described by parents

Unfinished Business Theme Coding Definition Total Responses n (%)
n = 35
Death discussion Sense of unfulfillment having not engaged in discussion with child about death 9 (26)
Expressions of love Sense of wanting to express love or support to the child more than was done 8 (23)
Unfulfilled experiences Sense that child had unfulfilled experiences 6 (17)
Attention to child’s needs Sense of certain needs of the child not being fully attended to 4 (11)
Never said goodbye Lack of resolution over not having said goodbye 3 (9)
Unasked questions Sense that there were unasked questions of the child related to either the relationship or their beliefs 3 (9)
Time Sense of unfulfillment of quality of time spent with child 1 (3)
Other Response unclear and therefore difficult to categorize 2 (6)
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Note. Numbers in this table reflect the frequencies and percentages of parents who endorsed a theme. Themes were not mutually exclusive; one parent endorsed more than one theme, and therefore percentages may be over 100%.

Discussion

Main Findings

This study investigated the prevalence and nature of regret and unfinished business among parents who lost a child to cancer and demonstrated that most parents (73%) reported regret about choices made while caregiving for their child. This prevalence rate is consistent with other studies of caregivers of adult patients and parents who lost a child to chronic illness.8, 37, 38 However, the present study further demonstrated that, perhaps unique to bereaved parents, regrets themselves were often around parents wishing they had pursued more or different types of treatment for their children rather than less intensive care. The pursuit of intensive care has previously been associated with regret and depressive symptoms in bereaved caregivers of adult patients.10 Interviewing bereaved parents of paediatric cancer patients, Mack and colleagues1 found that many would not recommend cancer-directed therapy for incurable paediatric cancer described in clinical vignettes of end-of-life scenarios, despite choosing this treatment for their own children. They1 and others39 noted, however, how what one would recommend hypothetically and in hindsight may differ from how one may operate personally when intense emotions are influencing decision-making.

The use of open-ended items in the present study allowed parents to describe the types of regrets that stuck with them and remained distressing through bereavement. Descriptions of regrets in this study were complex, reflecting parents often feeling torn between choices; yet only two parents in our sample expressed explicit regret about continuing to pursue intensive treatments. Bluebond-Langner and colleagues40 suggested that parents’ drive to search for cancer treatment options can become central to their very identity as parent. It is common for parents to want to believe that no stone has been left unturned. Thus, the discrepancy in regrets about the pursuit of intensive care between caregivers of adults and parents of children may speak to the intensity of the parental drive to protect and preserve, as characterized by Bowlby.19, 20 Protection from suffering is also a powerful force, and thus not surprisingly, parents’ perceptions of how much their child suffered also can significantly influence regrets about treatment decisions during caregiving41 and bereavement.1

Unfinished business was less prominent in the present sample, with only one-quarter of responding parents endorsing a sense that something was left unfinished, unspoken, or unresolved with their child. Of the parents who provided a description of their sense of unfinished business, the most common theme was parents feeling like they should have discussed death more with their child, which has previously been described16 and may be particularly important for parents of adolescents.42 Nevertheless, the appropriateness of prognostic disclosure to children has long been debated in the field, with some arguing to “never tell” and others to “always tell.”43 As with adults, children may also have differing preferences and capabilities of comprehending prognostic information.44 Thus, there has been increasing consensus that disclosure should be considered in context and on a case-by-case basis.43, 44 Other themes of unfinished business included parents wishing they had expressed more love or support toward the child and concerns that the child had unfulfilled experiences.

Because it is possible for parents to report regret and unfinished business without feeling particularly distressed by it, we examined the extent to which participants were distressed by these experiences. We found that, on average, parents were moderately distressed by their regrets and unfinished business. Regret-related distress was associated with losing a younger child, guilt about not feeling one did enough while their child was still alive, general caregiving-related distress, poorer family functioning during caregiving, and higher levels of prolonged grief symptoms. Persistent regret may reflect a protracted state of “protest” and parents’ natural wish to undo the death. However, as unfinished business-related distress was similarly associated with prolonged grief,15 an alternative explanation is that parents’ focus on regrets and/or unfinished business hinders the processing of grief and adaptation,45 maintaining prolonged grief symptoms over time. Both prolonged grief46, 47 and regret11 have been linked to ruminative thinking, which is more common in women.48 This may be in part why a greater proportion of mothers than fathers reported regrets and unfinished business.47

Strengths and Limitations of the Study

Study strengths include the multisite, mixed methods design, and use of rigorous qualitative methods. Limitations include a relatively homogenous convenience sample, cross-sectional design, retrospective self-reporting, and missing or ambiguous data, some of which was recoded as noted above. A more diverse sample may have revealed different prevalence rates of regret18 and other important themes, such as the affordability of care, involvement of multiple family members in decision-making, and other cross-cultural considerations. It is also unclear the extent to which parents received professional support around decision-making while their child was ill. While we assessed parents’ use of psychosocial support prior to the child’s death, we do not have details about the duration of support or timing of use.

An additional limitation of the study was the wide variation in the developmental stage and chronological age of the child, limiting a deeper understanding of developmental and legal considerations that often emerge around decision-making and communication.25 Parents who lost a child over age 18 years and those who lost a child less than 18 years old were intentionally included in order to capture the range of experiences with regret in parents who lost a child to paediatric cancer. Prior studies have demonstrated that these parents of adolescents and young adults with cancer may be particularly at risk for distress around decision-making, feeling torn between making decisions on their child’s behalf and supporting their child’s autonomy.25

Our observation of overlap in qualitative responses to the regret and unfinished business items suggested that some participants may not have perceived a distinction between these two constructs and highlighted the limitations of the assessment tools used. Additionally, there were discrepancies between responses on the quantitative responses about regret and unfinished business and the qualitative responses, which captured the presence of regret and unfinished business that was not reported in response to the quantitative items. While complicating interpretation, these findings also suggest the value of mixed-methods design for assessing complex experiences. Further, though parents provided meaningful written responses49 to the open-ended questions on regret and unfinished business, it is possible that conducting semi-structured interviews may have provided opportunity for deepening and clarification. Finally, this study is limited by the timing of data collection, which took place several years prior to this report. However, although there have been significant advances and invaluable recommendations of strategies for communication, intervention, and program development in paediatric palliative care,42, 44, 50–56 recent studies suggest an enduring need to improve support for parents in caregiving and medical-decision making related to palliative care through the end of their child’s life.54, 57–59 We hope that this report reinforces the importance of adopting, implementing, and disseminating paediatric palliative care advances more widely.

What This Study Adds

These findings have clinical implications for both how providers work with families before a child’s death as well as how to support parents in bereavement. Given the most common regrets centered around treatment decision-making, greater emotional and decision-making support appears warranted.60 It should not be assumed that parents who reach a decision are at peace with that decision. As the disease progresses, healthcare providers might take special care to explore decisions made thus far, providing reassurance, supporting coupled parents when their opinions may differ, and applying the “what if” framework to gently consider feared scenarios.50 Parents have also described how considering their choices in the context of what a “good parent would do” is helpful in coming to terms with decision-making.51, 52 Thus, clinicians can use interventions such as the Good Parent Tool to explore the personal meaning of being a good parent to their child.53 Integration of palliative care early in the illness trajectory could provide opportunities to discuss quality of life considerations54–56 and how to communicate with their child about death16, 61, 62 using age-appropriate communication strategies, such as those proposed by Stein and colleagues,63 to preempt a common source of unfinished business.

In bereavement, resolution of regrets and unfinished business has, not surprisingly, been associated with better adaptation to loss.11 Obtaining medical information from health care providers that corrects misunderstandings about the child’s illness or treatment may help mitigate regrets. Bereavement outreach by a healthcare provider from the child’s treatment team is thus critically important, as it provides not only an opportunity to express condolences and continuity of care but to also respond to any distressing questions about the illness and treatment, to validate the choices made, and to affirm that parents did everything they possibly could have given the circumstances.64–67

Psychotherapeutic interventions also have an important role. Torges, Stewart, and Nolen-Hoeksema11 noted that bereavement-related regrets may be addressed through cognitive strategies, such as reappraising, self-forgiveness, changing perception of control, and challenging hindsight bias.68 Regrets can also be alleviated through behavioral approaches, including completing something that was left incomplete.11 As ruminative preoccupation has been found to exacerbate struggles to find meaning in the loss, which in turn prospectively predicts greater prolonged grief symptoms,46 interventions that use imaginal work (e.g., letters, empty chair dialogues) and that focus on meaning reconstruction of events related to regrets,69 such as Meaning-Centered Grief Therapy (MCGT),70, 71 may also have benefit. In MCGT, bereaved parents are encouraged to compassionately explore their motives for making various treatment decisions, acknowledging and gently challenging the natural hindsight bias that commonly emerges. Working with the continuing bond to the deceased, imaginal work can facilitate resolution of regrets, engaging a compassionate stance that might be offered by the deceased and providing opportunities to ask for and receive forgiveness.72

Future Directions

Future research should include development of a psychometrically-sound measure of caregiving-related regret and use of recently developed validated measures, such as the Unfinished Business in Bereavement Scale.73 Qualitative interviews and longitudinal investigations could reveal the shifts in and complexities of regrets and unfinished business over time and directions for better supporting parents. They may also further elucidate the gender differences we observed. Grief intervention trials should assess regret and unfinished business as outcomes to determine if targeted approaches can facilitate resolution and related adjustment in bereavement. Finally, investigations of regrets and unfinished business could be done with parents bereaved by other causes of death.

Key Statements.

What is already known about the topic?

  • Parents who lose a child to cancer often struggle with decisions they made about their child’s care.

  • Regret and unfinished business among spouses and caregivers of adult patients have been associated with poorer adjustment in bereavement.

What this paper adds

  • This study showed that most parents bereaved by cancer experience regret and that regrets are often related to cancer treatment decisions.

  • Approximately one-quarter of parents bereaved by cancer reported a sense of unfinished business with their child, and those who did also expressed regret.

  • Distress about regrets and unfinished business was associated with distress related to caregiving and prolonged grief symptoms, suggesting the importance of supporting parents while they are actively caregiving.

Implications for practice, theory, or policy

  • Greater support for parents around treatment decision-making and end-of-life conversations with their ill child is warranted.

  • Bereavement outreach by healthcare providers can provide parents with further reassurance about choices at the end of their child’s life.

  • Psychotherapeutic grief interventions with bereaved parents may use cognitive-behavioral and meaning-centered approaches to address regret and unfinished business.

Acknowledgments

We are deeply indebted to the bereaved parents who participated in and shared so much for this study. We would also like to thank those colleagues who gave their time, ideas, and support to this study, including Abraham Bartell, MD, Tara Bohn, BA, Farid Boulad, MD, Ira Dunkel, MD, Maria Farberov, MPH, Geoffrey Corner, MA, Cynthia Gerhardt, MD, Stephen Gilheeney, MD, Yasmin Khakoo, MD, Julia Kearny, MD, Nancy Kernan, MD, Rachel Kobos, MD, Melinda Merchant, MD, PhD, Paul Meyers, MD, Shakeel Modak, MD, Jamie Ostroff, PhD, Richard O’Reilly, MD, Kristin Riekert, MD, Elyse Shuk, MA, Neerav Shukla, MD, Trudy Small, MD, Peter Steinherz, MD, Katherine Warren, MD, and Leonard Wexler, MD. A special thanks to Nina Pickett for her tremendous support of our work in this area and to the Isabel, Harold, and Gerry Feld Fund for Bereavement.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the National Cancer Institute [R03 CA139944, K07CA172216, R21 CA218313, R35CA197730, T32 CA009461 and P30CA008748]; the National Institute of Mental Health [R21MH095378]; and the American Cancer Society.

Footnotes

Declaration of Conflicts of Interest: The Authors declare that there is no conflict of interest.

Data Sharing: Data can be obtained by contacting the corresponding author.

Online Supplement

Additional Data Coding Procedures

Quantitative ratings of presence of regret and unfinished business were recoded from “no” to “yes” when parents reported a corresponding distress rating and qualitative response in 4 cases for regret and 4 for unfinished business. We found that 4 parents provided an example of their most troubling regret and rated a level of distress about this regret greater than 1 (i.e., at least a little distress about the regret described), but did not provide a response to the presence of regret item (n=3) or rated “no” presence of regret (n=1). These 4 parents were recoded as having presence of regret. Of note, 6 participants provided descriptions of their most troubling regret but did not respond to the quantitative presence of regret or regret-related distress items. These individuals were not coded as having presence of regret in the quantitative analysis since they did not indicate they were distressed by these regrets, and we did not want to make assumptions that these were active distressing regrets. We found that 4 other parents described an example of their most troubling source of unfinished business and rated a level of distress about this unfinished business greater than 1 (i.e., at least a little distress about the unfinished business described) but rated “no” presence of unfinished business. These 4 parents were recoded as having presence of unfinished business.

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