Complementary and Alternative Medicine Use in Children with Cancer at the End of Life

Abstract

Background:

The use of complementary and alternative medicines (CAM) in patients with cancer is well recognized. Little is known, however, about the use of CAM in children with cancer during the end-of-life period.

Methods:

We interviewed 96 parents of children who had died of cancer in Melbourne, Australia between 1996 and 2004 to establish the prevalence of CAM use during the end-of-life period. Factors affecting the use of CAM were explored. We also determined the perceived efficacy of CAM use and its effect on the overall experience of end-of-life care.

Results:

Thirty percent of parents caring for a child with cancer reported using some form of CAM during the end-of-life period, with 44% of these families using more than one type. The most common therapies used were organic foods, faith healing, and homeopathy. There was a strong correlation between open discussion about treatment alternatives with the treating physician and parental use of CAM. The majority (78%) of respondents felt CAM use had benefited their child significantly and most felt it had not caused additional suffering.

Conclusions:

A significant number of children with cancer are administered CAM during the end-of-life period and most families in our study had found it beneficial. The main focus should continue to be on open and honest communication between caregivers and families in order to provide the best possible holistic care.

Introduction

Complementary and alternative medicine (CAM) has been defined as “a group of diverse medical health care systems, practices, and products that are not presently considered to be a part of conventional medicine”¹ and includes such modalities as acupuncture, osteopathy, and herbal supplements. The use of CAM in children with cancer has long been recognized^2,3 with an increasing prevalence having been documented in numerous international studies.^2,4–10 A systematic review showed a prevalence of CAM use of 6% to 91% among pediatric oncology populations, with most studies reporting prevalence between 20% and 60%.⁴ Factors that have been shown to predict CAM use include poorer prognosis or relapse,^7,11,12 parent education level,^1,13–15 and religiosity.¹⁶

In recent years, there have also been rapid developments in the area of pediatric palliative care,^17–19 including the generation of guidelines for palliative care in children^20,21 focusing on the need for child-, family-, and community-centred care.²⁰ Despite this, there has been little research focusing directly on the use of CAM in the palliative phase of children with cancer. Tomlinson and colleagues reported on a Canadian population of 77 children receiving palliative care, and found a prevalence of CAM use of 29% in that population.²² However, that study examined CAM use across the entire disease trajectory and not specifically during the end-of-life period. Further, no studies have explored the perceived benefits of CAM use in the palliative phase of disease and its effect on the overall experience of end of life.

In this study, we aimed to determine the prevalence of CAM use in the end-of-life period by interviewing parents whose children had died of cancer. We also examined factors affecting CAM use during the end-of-life period. Finally, we investigated the perceived benefits of CAM, and its overall impact on the end-of-life experience.

Methods

Participants

The study was conducted at the Royal Children's Hospital, Melbourne, Australia. The study population consisted of parents of children who had died of cancer between 1996 and 2004. Eligibility criteria for the study were as follows: parents had a child who had died of cancer at least a year prior to study enrolment, parents were English-speaking, parents had no known major psychiatric diagnosis, and permission to contact the parents was provided by the child's primary oncologist and social worker. Eligible parents were sent a letter inviting them to participate in the study, along with reply-paid postcards to either express interest or decline participation. Parents who expressed interest in the study were contacted by telephone to arrange an interview.

Measures and procedure

After written informed consent was obtained, trained clinical psychologists conducted structured, in-person interviews with study participants. In the majority of cases, one parent from each family was interviewed. Following the interview, parents completed and returned questionnaires. The content of the interview and questionnaires was developed by one of the authors (JW) and has been reported previously.²³ Some measures and language were adjusted for use in our Australian population. Parents were asked about their use of treatments including CAM during the end-of-life period, the goals and perceived benefits of treatment, their experiences with their child's treating team, and their child's quality of life.

Statistical analyses

Statistical analyses were performed using the SPSS software version 20 (SPSS Inc., Chicago, IL). The χ² test for independence and the Mann-Whitney U test for independent observation were utilized to investigate differences between the CAM users and nonusers. P<0.05 was considered significant. Some variables graded with the use of Likert scales were dichotomized, as specified in the text.

Results

Of one hundred and ninety-three families identified as eligible for the study, 144 were located, and 100 agreed to participate. Parents from 96 families (response rate=50%) were interviewed between February 2004 and August 2006, with interviews taking place a mean (±standard deviation [SD]) of 4.5 (±2.1) years after the child's death. Eighty-nine of the parents who were interviewed subsequently returned self-report questionnaires.

Parent and child characteristics

Parents were on average 43.6±8.1 years old at the time of interview, and the majority were female (82%) and white (95%). About half (49%) of the parents had more than a high school education, and 60% identified with a Christian faith. Fifty-seven percent of the children were male. The mean age at death was 9.4 (±5.4) years, with average disease duration of 2.7 (±2.4) years. Thirty-six percent of the children had had leukemia, 32% had had a brain tumor, and the remaining 32% had had other solid tumors. The mean duration of palliative care (defined as when the parent accepted there was no realistic chance of cure) was 4.3±8.3 months, with a range from 1 day to 6 years.

Use of complementary and alternative medicines

Thirty percent (n=27) of the children with cancer were reported as having used at least one type of CAM during the end-of-life period. Of these, 44% reported were reported as having used more than one type, with a maximum of four types. The most common types of CAM used were organic foods and drinks, homeopathy, and faith healing. A summary of types of CAM used is listed in Table 1.

Table 1.

Type and Distribution of Complementary and Alternative Medicine in Children with Cancer during the End-of-Life Period

Type of complementary and alternative medicine	N (27 patients; 37 uses)
Organic foods/Supplements	8
Faith healing/Prayers	6
Homeopathy	6
Vitamins/Health remedies	5
Herbal treatments	3
Chinese medicines	2
Naturopathy	2
Kinesiology	2
Reiki therapy	2
Microwave therapy	1

Factors affecting CAM use

There were no significant differences detected between parents of children with cancer who had used CAM during the end-of-life period and those who had not in terms of age, income, education, and faith (data not shown). Similarly, there were no significant differences between the children who had used CAM and those who had not in terms of age, gender, diagnosis, or duration of endof-life period (data not shown).

Parents of children who had received CAM did not differ significantly from parents of children who had not received CAM in terms of their goals during the end-of-life period (p=0.654), with the majority of parents stating that the goal was to lessen suffering (76% in the CAM users and 85% in the nonusers, respectively).

Sixty-three percent of parents who had used CAM for their children thought that the care their child had received by the primary oncologist during the end-of-life period was either “excellent,” “very good,” or “good.” This was not significantly different from the group of parents whose child had not received CAM (p=0.891). Parents whose children had used CAM were significantly more likely to either “strongly agree” or “agree” that their child's oncologist had provided clear explanations about treatment alternatives during end-of-life care (p<0.001).

Perceived benefits and impact on end-of-life period

The majority (78%) of respondents felt that their child had benefited either “a great deal” or “a lot” as a result of CAM use, and most (85%) felt that their child had not suffered as a result. The most common benefits mentioned were that the child had been more relaxed, had had more energy, had had less pain, had had a more positive attitude, and had had more hope or spiritual strength. Of the parents who felt that their child had not benefited from CAM, reasons included that it was started too late or that the child had not enjoyed the treatment.

Despite the perceived benefit of CAM, parents whose children had received CAM perceived significantly lower levels of child enjoyment during the last month of life than parents whose children had not received CAM (p=0.013), although they did not spend more days in the hospital (p=0.419). Families that had used CAM were no more likely to report “great” or “moderate” economic hardship (p=0.473).

Discussion

We sought to understand parents' use of CAM in caring for children with cancer at the end of life. We found significant use of CAM in this population, with a prevalence of 30%. This is a prevalence similar to that reported in a recent Canadian study examining CAM use in the palliative phase of disease,²² as well as to many other studies of children with cancer that were not specific to the end-of-life period.^7,12,24–26 It is a slightly lower prevalence than the 46% reported in a previous study of Australian children with cancer,¹⁰ and many other studies of both Western and non-Western populations report significantly higher prevalences,^5,9,14,15,27 although differences in definition of CAM may account for some of this variability. There is previous evidence that CAM use is higher in children who have a poorer prognosis, have relapsed, or are further from the time of diagnosis^6,7,11,12,25; however, our data do not suggest that CAM use in the end-of-life period is significantly greater than in the period when children are receiving active treatment.

Our study found that biologically based therapies (including organic foods, vitamins, and herbal medicines) were the most commonly used form of CAM, which is consistent with many other studies.⁴ In fact, the three most common types of CAM used in our population – organic foods and drinks, homeopathy, and faith healing/prayer – have often been reported among the most commonly used types of CAM,^{7,11,12,22,27} although there is significant variation among different cultures.^5,6,14,15

The majority of parents stated that their primary goal during the end-of-life period was to lessen suffering rather than prolong life. It is important for physicians to understand that parents use CAM in their child to lessen suffering and not because of a hope to prolong their child's life or even to cure their child. More than three-quarters of parents whose children had received CAM believed that it had benefited their child and did not cause any additional suffering. This is consistent with existing literature, which suggests a very high satisfaction rate with the use of CAM in children with cancer. It is interesting to note, however, that in our study the group of children that received CAM were significantly less likely to have enjoyed their last month of life, as reported by their parents. This trend has been observed in other studies,¹³ and may be due to the use of CAM as an attempt to improve a poor quality of life. Alternatively, it is possible that parents failed to recognize an association between CAM use and a lessening of quality of life.

There have been some reports that demographic factors including religiosity and education level may be associated with the use of CAM in children with cancer,^{7,8,11,14–16} but we found no such association in our population.

There has been previous evidence that parents who have used CAM were more likely to be dissatisfied with the child's physician⁹; however, this was not the case in our population. In fact, parents who used CAM were more likely to report that the primary oncologist had discussed treatment alternatives with them during the end-of-life period. Although we were unable to determine the exact nature of parent-doctor discussions at the end of life in this study, this finding suggests that the primary oncologist may play an important role in a family's decision to use CAM. This is an interesting finding, given that many previous studies have shown that a majority of families using CAM choose not to discuss this with their child's doctors.^{3,5,6,10,15,27,28}

There are a number of shortcomings in this study that restrict interpretation of the data. Although the participating families appear to be representative, the possibility of selection bias cannot be discounted. The information collected was retrospective, relying on the accurate recollection of parents some years after the events. Whereas the significance of the events means that parents are not likely to forget them easily, it is possible that their interpretation may have been affected by their own subsequent bereavement experiences. Furthermore, it is possible that the parents' impression of their child's symptoms and suffering may not accurately reflect the child's actual experience. The findings are also from one center alone, which may not be representative of other areas of Australia, particularly more rural and remote regions. In addition, the exclusion of non-English-speaking families may have resulted in underestimation of the use of CAM. It has previously been shown that cultural and ethnic factors may play an important role in attitudes to CAM use.²⁹

Our study has shown that CAM use in the palliative phase of cancer is similar to that in the general pediatric oncology population. The high prevalence of CAM use highlights the importance of physicians and other members of the child's palliative care team being well-informed about various types of CAM so as to be able to counsel and advise families as best as possible. Previous research suggests that less than 50% of pediatric oncologists discuss the use of CAM with patients and their parents, with lack of knowledge and concern over potential side effects given as the main reasons for not discussing CAM.³⁰ Physicians should remain cognizant of the fact that many families will contemplate using CAM—indeed, previous research has shown that a majority of families at least consider the use of CAM for their child in the end-of-life period.²² Members of the child's treating team should initiate open discussions about this with patients and their parents. Studies have shown that families would like more information about CAM to be available from their child's care team²⁵ and would be interested in having their child receive CAM through the treating institution if available.¹⁴ Families should be encouraged to inform their child's care providers when using CAM and to notify them of any potential adverse events.

There are few studies on the efficacy and safety of most forms of CAM,³¹ and as a result there is little evidence to either support or discourage its use. The high prevalence of the use of CAM in pediatric oncology populations highlights the need for further investigation into its safety and efficacy. An integrated approach extending beyond conventional treatment is becoming increasingly important in pediatric oncology, particularly in a palliative setting.

Footnotes

Acknowledgments

This study was supported by an NHMRC Palliative Care Grant.

Author Disclosure Statement

No competing financial interests exist.

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