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Understanding Parents’ Approaches to Care and Treatment of Children With Cancer When Standard Therapy Has Failed

Myra Bluebond-Langner, Jean Bello Belasco, Ann Goldman, Carmen Belasco

From Rutgers University, New Brunswick, NJ; Children's Hospital of Philadelphia, Philadelphia, PA; and the Great Ormond St Hospital for Children, London, United Kingdom

Address reprint requests to Myra Bluebond-Langner, PhD, Rutgers University, Department of Sociology, Anthropology and Criminal Justice, 405-407 Cooper St, Camden, NJ 08102; e-mail: bluebond{at}camden.rutgers.edu

	ABSTRACT

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Purpose To examine US and United Kingdom (UK) parents’ approaches to care and treatment when standard therapy has failed and consider implications for clinical practice.

Methods We conducted a prospective, ethnographic study of parents, patients, and staff, including participant-observation; open-ended, semistructured interviews; and review of medical records at a US and UK pediatric oncology center. Thirty-four children (n = 17 US, 17 UK), whose disease had recurred with less than 30% chance of cure, were enrolled between March 2001 and June 2002 and followed until death (n = 11 US, 14 UK) or close of study in December 2005 (n = 6 US, 3 UK).

Results There were no major differences between parents’ approaches in the US and UK despite differences in health care systems, institutions, and parents’ religion or ethnicity. All parents continued to have or request meetings with the oncologist and investigative procedures. No parent initiated discontinuation of cancer- or symptom-directed interventions. In 28 of 34 cases (13 US, 15 UK), parents continued to pursue cancer-directed therapies; in 16 of 28 cases (seven US, nine UK), parents initiated inquires beyond what was offered.

Conclusion Understanding parents’ behavior requires attention to the reason and emotion they bring to decision making and their children's care, their unique responsibilities as parents, and what they learn throughout the illness. Parents do not see cancer-directed therapy and symptom-directed care as mutually exclusive, alternative approaches. Parents will not be constrained by what the oncologist offers. Physicians and parents discuss and negotiate care and treatment throughout the illness. Our findings suggest developing integrative care models incorporating cancer-directed, symptom-directed, and supportive care throughout the illness; they are most consistent with parents’ approaches and advances in pediatric oncology.

	INTRODUCTION

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Although the prognosis for children with cancer has improved, not all children are cured.^1-5 Typically, the realization that they will not be cured comes after a period of aggressive therapy. Parents are then faced with a number of choices that may include enrolling the child onto a phase I/II clinical trial, trying a second-line chemotherapy or a more aggressive therapy, or shifting the focus entirely to [symptom-directed care.]^2,6-12 That few parents choose to shift entirely to symptom-directed care, even within weeks and sometimes days of the child's death, concerns researchers and practitioners.^10,11,13-18

Researchers and professional organizations have urged further research, particularly in the form of prospective studies involving all stakeholders.^4,10,17,18 We undertook such a study to better understand how parents, physicians, and, in some cases, children decide what to do when standard therapy has failed and cure is unlikely. Here, we report on US and United Kingdom (UK) parents’ approaches to care and treatment, offer an explanation for parents’ behavior, and consider some of the implications of our findings for clinical practice.

	METHODS

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Research Design
The principal investigator (PI), M.B.-L., an anthropologist, conducted 17 consecutive months of full-time ethnographic fieldwork: 10 months at a major pediatric oncology center in the US, followed by 7 at a major pediatric oncology center in the UK.^19-24

The PI spent 6 to 7 days per week with the parents, children, and clinicians, observing and recording their encounters in the hospitals, in clinics, and at patients’ homes. She had regular, repeated contact with all stakeholders in different settings. The PI audio recorded family meetings; rounds; and informal conversations (eg, corridor chats, family meals), especially those immediately before and after family meetings and rounds, when options about care and treatment were discussed; and her own interactions (eg, interviews and conversations) with parents, patients, and staff. The PI used a semistructured, open-ended interview guide both as a way of structuring conversations and as a checklist to ensure that data on all cases were as complete and comparable as possible. The data set includes 739 hours of audiotaped interaction, transcribed verbatim and indexed, as well as notes taken on those interactions and on those not audio recorded. Notes were entered into field journals and indexed.^21,23

Review of patients’ medical records provided documentation of their conditions, treatment decisions, and what therapy and care each received from diagnosis through death or close of study in December 2005. Each patient's medical record was abstracted and then reviewed by one of the physician authors.

Constant and continuous comparison among all types of data and within types was essential to understanding the nature of parents’ approaches.^21,23 Medical records showed what treatment the child received, but not necessarily what had been offered, or whether the parents had looked elsewhere or asked the physician to do so. This information often came from transcripts of family meetings, interviews, and informal conversations. Review of all of these sources was necessary for a complete picture of parents’ responses.

Coding and classification of parents’ responses was done by the PI and three research assistants, and reviewed independently by the physician coauthors. Indexing, coding, and tabulating of all data was facilitated through use of a customized database management program for analysis of qualitative data.²²

Terminology
We use the term [cancer-directed therapy] or [cancer-directed interventions] to distinguish therapies or interventions (regardless of efficacy or potential for remission or cure) aimed at stopping or slowing the progression of the neoplasm from therapies or interventions directed at adverse effects of treatment, sequelae of disease (eg, seizures), discomfort, or pain—what we and others call symptom-directed care. Cancer-directed therapies or interventions included phase I/II clinical trials, second-line chemotherapies (ie, known therapies with limited curative efficacy), newer interventions (eg, antiangiogenesis drugs), or more aggressive therapies (eg, high-dose chemotherapy with stem-cell rescue). Although clinicians used the term [palliative chemotherapy] in written or oral communication with other clinicians, the term was not used by parents.

Eligibility and Enrollment
Study design required a full range of malignancies, and that the PI be present and record meetings between clinicians, and between parents and clinicians when the patient's condition and options for care and treatment were discussed. In the UK, it was possible to do both because the meetings of the various patient services did not conflict. In the US, to minimize schedule conflict, we decided to draw only from neuro-oncology (Table 1). Also, because all neuro-oncology patients were discussed at the weekly multidisciplinary team meetings at the time of their recurrence or progression, we could verify that all eligible cases had been referred and that no ineligible patients had been enrolled. On review, all eligible cases had been referred and no ineligible cases had been enrolled. Eligible cases not enrolled included two families (US) whose first meetings with the neuro-oncologist about the recurrence and options for care and treatment occurred when the PI was absent, and three (two US, one UK) who were invited to participate, but declined.

	RESULTS

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At each recurrence or progression, the patient's primary oncologist discussed with the patient's parents the patient's condition; options for treatment of disease, pain, and discomfort arising from the disease or treatment; further investigative procedures (eg, magnetic resonance imaging, computed tomography scans, and bone marrow aspirations, spinal taps); and further supplemental or supportive therapies (eg, enteral nutrition, transfusions). It is clear from our research that physicians never simply took the lead and urged parents to pursue further cancer-directed therapy. Every physician we observed presented the prognosis as well as the purpose and promise, if any, of the cancer-directed therapies. They also made clear that focusing exclusively on symptom-directed care (sometimes referred to as palliative care) and not continuing [to treat the disease] was a reasonable course, one some parents chose. Importantly, all patients were offered and received symptom-directed care whether or not they received cancer-directed therapies. Conversations about care and treatment were frequent and ongoing. Figures 1 and 2 document parents’ responses to the options the child's oncologist presented to them at the last recurrence studied. [Last recurrence studied] refers to the last recurrence of the children who died (n = 11 US, 14 UK) during the study period, and the last recurrence of the children who were alive (n = 6 US, 3 UK) at close of data collection (December 2005; Table 2).

View larger version (15K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig 1. Parents’ responses of (A) accepting or (B) declining offers of further cancer-directed therapy from their child's primary oncologist at last recurrence studied (n = 23). UK, United Kingdom.

View larger version (19K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig 2. Parents’ responses when their child's primary oncologist did not offer further cancer-directed therapy at last recurrence (n = 11). UK, United Kingdom.

Parents’ Responses When Their Child's Oncologist Did Not Offer Further Cancer-Directed Therapy
Parents of 11 (n = 4 US, 7 UK) of the 34 children enrolled were not offered further cancer-directed therapy by their child's primary oncologist at the last recurrence studied. Parents’ responses can be classified as follows (Fig 2): (1) In two cases (one US, one UK), the parents neither looked for further cancer-directed therapies, nor asked the oncologist to do so. (2) In two cases (one US, one UK), the parents continued to look for further cancer-directed therapy on their own. In one case, the child was not eligible for what the parents found. In the other, the parents located a phase I/II trial and received the agent off study, in consultation with their child's primary oncologist. (3) In five cases (two US, three UK), the parents asked the child's primary oncologist to look for further cancer-directed options. Nothing was identified for which the children were eligible. (4) In two cases (UK), the parents both looked for further cancer-directed options and asked the child's primary oncologist to look. Neither the parents nor oncologists identified anything further that could be given.

For seven (n = 3 US, 4 UK) of the children whose parents were not offered further cancer-directed therapies, searches and discussions with the child's primary oncologist about further therapies or trials continued until 3 to 10 days before the child's death.

In sum, in the majority of cases, at the last recurrence studied, parents pursued cancer-directed therapy. In 28 cases (13 US, 15 UK) the parents accepted the cancer-directed therapy that had been offered by their child's primary oncologist, or looked on their own or asked the child's primary oncologist to do so. In 16 of those cases (seven US, nine UK), the parents looked beyond what had been offered or asked the oncologist to do so. In only six (four US, two UK) of the 34 cases did the parents not pursue further cancer-directed therapy for their children.

Parents’ Responses to Continuation of Cancer-Directed, Symptom-Directed, and Supportive Therapies; Meetings With the Child's Oncologist; and Investigatory Procedures
No parent at either center (n = 17 US, 17 UK) ever initiated the discontinuation of any cancer-directed, symptom-directed, or supportive therapies. Of note, of the 25 children who died (n = 11 US, 14 UK), 11 (n = 6 US, 5 UK) received some cancer-directed therapy within the last month of life. No parent declined opioids or other medication for pain and discomfort. All parents accepted ongoing symptom-directed and supportive care for their children.

All parents continued to be in contact with the child's oncologist to discuss the child's condition. All continued with investigative procedures or requested them, even when cancer-directed therapies had ended. Two children (UK) were scanned at their parents’ request within the last 24 hours of life.

Parents spoke of how even before the diagnosis was made and throughout the illness their tenacity, pursuit of second opinions, attention to the smallest changes in the child's condition, and requests for additional tests and scans when not ordered made a difference. Parents of at least 22 children (n = 11 US, 11 UK) had, at some point since diagnosis, contacted other centers or investigators about other treatment options, or asked their child's oncologist to do so. Among those were parents of 10 children (n = 5 US, 5 UK) at home receiving hospice–palliative care services at time of inquiry.

Parents waiting for a chosen option to become available, or for the child able to receive it, often asked if it could be started sooner, [before things got out of control.] Similarly, when told that a particular cancer-directed intervention should be stopped because the tumor was still growing despite the therapy, parents often asked about continuing it a bit longer to give it [a longer chance to work.]

Choosing cancer-directed therapies did not necessarily indicate expectation of cure.¹⁴ As a mother about to choose another cancer-directed agent after her child's malignant brain tumor recurred a second time said of the possibility of cure, [I wasn't sure about the busulfan, but I wanted to try something that might be a miracle around the corner and he [the child's primary oncologist] really wanted to try it. So it was kind of mutual. And I think that's better. It didn't work. And I don't hold him responsible for that. And I'm not responsible for that. We just tried something that was out there that could have worked... [There are] all these treatments that he could take, but nothing really, but that's the situation; there's no cure.]

For a disease-directed option to be worth trying, all that was required was that the oncologist not declare that the possibility of some change was absolutely zero. These parents had previously chosen other cancer-directed therapies with low probability of cure. Of the 34 children in the study, 26 (n = 15 US, 11 UK; Table 2) had survived a previous recurrence or malignant neoplasm when the chosen option had a less than 30% chance of cure. Of the 25 children who died, 19 (n = 9 US, 10 UK) had survived at least one recurrence when the chance of cure from the option selected was less than 30%.

Having more time with their child was a major feature of parents’ approaches to care and treatment. As one mother of a child receiving cancer-directed therapy following return from another institution where a second transplant had been offered, but was not feasible when the child developed a fungal infection, said, [I have no regrets [about going for the second transplant]. If I had stayed here [at the first institution], he would have been dead. Instead we had from Christmastime till now [4.5 months], and maybe we will have him longer.]

	DISCUSSION

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Parents at both centers, regardless of religion, ethnicity, or culture, came to participate in a common practice of parenting. Parents learned about treating and caring for a child with cancer explicitly and, by example, in encounters with those who cared for and treated their children. At diagnosis and with each recurrence, the oncologist put forward a menu of cancer-directed and non–cancer-directed options. By first recurrence, parents had become accustomed to hearing options and making choices in a particular way with particular kinds of information before them. At each recurrence, as at diagnosis, they considered cancer-directed options along with symptom-directed and supportive care and further investigative procedures. Seeking cancer-directed therapy, being in contact with the child's oncologist, and continuing with further scanning and procedures as well as with symptom-directed and supportive interventions emerged as essential constituents of the parental role.

The quest for further cancer-directed therapies or interventions was as much a part of the parents’ relentless efforts as sleepless nights, exhausting days, and trips to the hospital. All were expressions of the parents’ roles as decision makers, carers, protectors, and advocates; manifestations of a common practice. Illness had become the context that defined what it meant to be a parent.²⁵ In this experience, their identity as parents was forged. Their task, their responsibility as parents, as decision makers for their child, as they both perceived and enacted it, was to leave no stone unturned.

Parents’ behavior stemmed partly from what they learned in the process of caring for their child in tertiary care institutions, in societies where the latest news in cancer research is part of everyday media and Internet coverage, and where children with cancer are living longer. Parents learned to participate in a process of seeking and evaluating cancer-directed, symptom-directed, and supportive therapies. They came to understand their role and responsibility as parents as to keep options open for their child. They were not necessarily committed to search for cure. Parents bargained and traded for time. Parents chose options with infinitesimal odds because the prize they sought was of immeasurable worth.

Although only 34 cases (17 US, 17 UK) were studied, the data on all subjects were exhaustive (including complete medical records and multiple hours of recorded interaction and observations over several months), and the results from both cohorts were the same despite differences in the countries’ health care systems, the centers’ organization, parents’ backgrounds, and patients’ cancers.

Having made an offer of a cancer-directed therapy, or having explained to parents that there is nothing to offer to combat the disease, the physician cannot expect that parents will stop looking or asking. Parents will not be constrained by what the child's primary oncologist offers. It is likely that the oncologist and the parents will be discussing and negotiating the child's care and treatment throughout the illness, even sometimes to within days of the child's death.

Improved communication and explanation, increased honesty, and trust are, without doubt, of value.^10,13-15 But improvements in these areas, even the presence of a well-developed palliative care program, although of benefit, will not necessarily alter the pattern of parents’ approaches to care and treatment. The results of our study indicate that parents want and will seek both cancer-directed therapies and optimal symptom management and supportive care. For parents, it is not a choice of one over the other. This is common practice on both sides of the Atlantic.

Our findings suggest developing integrative care models incorporating cancer-directed, symptom-directed, and supportive care throughout the course of the illness; for they are most consistent with parents’ approaches and continuing advances in pediatric cancer care and treatment as well as the evolution of pediatric palliative care and hospice services.^10,11,17

	AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

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The author(s) indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

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Conception and design: Myra Bluebond-Langner, Jean Bello Belasco, Ann Goldman

Administrative support: Myra Bluebond-Langner

Provision of study materials or patients: Jean Bello Belasco, Ann Goldman

Collection and assembly of data: Myra Bluebond-Langner, Carmen Belasco

Data analysis and interpretation: Myra Bluebond-Langner, Jean Bello Belasco, Ann Goldman, Carmen Belasco

Manuscript writing: Myra Bluebond-Langner, Jean Bello Belasco, Ann Goldman, Carmen Belasco

Final approval of manuscript: Myra Bluebond-Langner, Jean Bello Belasco, Ann Goldman, Carmen Belasco

	ACKNOWLEDGMENTS

 
We thank to the parents, children, and staff who participated and were so patient with us. The study benefited from the work of Amy DeCicco, Laura Hall-Seelig, Patricia Henley, Jean Mancinni, Martha Mazieka, Megan Nordquest, Sarah Rundall, Helen Skiera, Claire Solomon, and Nancy Southerland, and Beverly Lange's comments.

	NOTES

 
Supported by grants from the Johnson & Johnson Family of Companies, Stanley T. Johnson Foundation, Olivia Hodson Foundation, National Endowment of the Humanities, REACH Fund of Great Ormond St Hospital, Fannie E. Rippel Foundation, and ELS Counselors.

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

	REFERENCES

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Submitted August 17, 2006; accepted March 16, 2007.

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