Keywords

When a young child’s serious illness is diagnosed, the child’s entire family is drastically affected. In addition to coping with worry, fear, and the child’s pain and suffering, the family must learn to navigate a complicated health care bureaucracy, and make decisions, often with little time for thought, that have the impact to change all their lives. Clearly the family requires more than just medical care for their child, and can benefit from a variety of supports. It may seem that philosophers have little to contribute, and yet they and other theorists can help understand what is happening to the family, and what help they might need, beyond medical treatment for their child. This is particularly true when one minor child in the family is a bone marrow match for the ill child, and has the potential to have bone marrow extracted and inserted into the sibling. If successful, the implanted bone marrow can generate blood and other bodily material on an ongoing basis and therefore help heal the previously ill sibling.

In this chapter, I begin with a discussion of the complex nature of family responses and decision making in these circumstances. Parents can experience significant pressure, both because of the urgency of the decisions that face them, and because their circumstances involve healthy children making sacrifices for an ill sibling. Their children, in turn, may face pressure both because of parental expectations and because of concern for their sibling. Then I explore three interrelated sets of questions that arise at three different time periods – when making the initial decision to use one child’s bone marrow to help save another, when the families are living with uncertainty and what they hope will be a period of recovery, and after the ill child has received medical treatment and the resolution is largely known.

At the time of diagnosis, does pressure to respond quickly about a vitally important concern, along with complex family dynamics involved when both bone marrow donor and recipient are children, make it difficult to make informed medical decisions? How might a relational understanding of the nature of autonomy help us think about this decision making? Next, once a decision has been made, and while family members are dealing with a child’s ongoing serious illness, how do they balance their personal needs against what they want for their ill family member? What can an ethics of care contribute to theorizing the situation? Finally, after the medical treatment has occurred, how might the family think about what, if anything, is owed in return for the donation? Here I distinguish between gratitude and indebtedness and argue that making this distinction clearer could be helpful for some families.

My remarks are inspired by material from interviews conducted with seventeen families in which one minor child served as a donor to another, as to what they experienced following their seriously ill child’s diagnosis (Jürgensen and Herzog 2018). These interviews were part of a qualitative multidisciplinary study carried out at the Institute of History of Medicine and Science Studies, University of Lübeck, on bone marrow donation between sibling minor children. In the records of the interviews, each family is anonymized. All those family members willing to speak were recorded, with the recordings later transcribed and translated into English. Most but not all of the ill children survived, as discussed in the Introduction to this volume.

1 Expectations, Ethics, Pressure, and Family Decision Making

When a child was diagnosed as seriously ill and in need of bone marrow, the families typically encountered this as a crisis, demanding almost immediate decisions about treatment options. One image they used is striking: several families spoke of feeling like they were suddenly living “in the wrong movie.” (### reference to intro II ###) Not only does this metaphor convey the idea of radical and inexplicable change but also the suggestion that one’s actions post diagnosis feel scripted. The illness strikes and changes the lives of everyone in the family and now doctors, rather than film directors, mandate what needs to happen next. Clearly the parents in these families felt themselves to be under incredible pressure.

In addition to suddenly finding themselves in a high pressure medical drama, the ill child, parents and siblings, can feel as if they have no real options and that there is no need to discuss decisions, whether within the family or with outside sources of support, because there is no decision to be made. According to the script, everyone in the family should be tested to see if they are a good match for bone marrow donation; if someone is a good match, or the best match, they must have some bone marrow removed, and then everyone waits to see if the ill child can use this bone marrow to heal.

Speaking about her donor daughter, the mother in the Bahr family saysFootnote 1: “she (.) sensed the PRESSURE, she HAD TO- she didn’t have a choice. We asked her (.) and explained it to her, said to her, ARE you going to do this, do you want to do this, but actually everything was really obvious (.), she’s got to do this, even if we ask her, it was a charade, (.) you see. (.) It was clear to all of us (.) and SHE sensed the pressure, yeah.” In the Bahr family, the donor was asked, but in the Grohmann family, this never happened. The Grohmann mother says: “I was asked by friends years later, er: ‘did you actually ask Greta if that was what she wanted?’ and I said: ‘it never, it never occurred to us, for us it was actually ALWAYS going to be (.) the case, like, if Greta was a match then that’s what would happen (swallows), you know?’” Similarly, the father in the Preuss family says: “Of course we (laughs) asked Pascal (.), you know, but he also (.), well, saying no was never an op- OPTION for him. So (.) none of us thought about NOT doing it, (.) you know (..) that was absolutely never an option for us.”

As the quotes above suggest, often there were different reasons why family members felt they had real choices. In some cases the ill child’s siblings refused to consider an alternative to attempting to save their sibling’s life. For instance, a non-donor sibling in the Kirstein family, who was not a match, describes herself thinking: “she has to have bone marrow and that we all need to get ourselves tested, (.) or whether we wanted to get ourselves tested and I think, that’s actually not something to question.” Similarly the daughter in the Preuss family wanted to donate, even though she wasn’t sure what that involved: “I didn’t know at that time what I was supposed to donate or what a transplant was. I didn’t know what bone marrow was etc. etc. (.). All I knew was that (.) if they ask me if I’d like to donate and I say yes (.), that I would be saving my sister’s life.”

In other families there was no discussion about whether anyone would be tested to see if they were potential matches, and no discussion about whether potential donors would donate. Another non-donor sibling, says: “I can’t now remember the moment when my parents asked me, Manuel, would you like to get typed? It was a sort of thing, that you, like it SHOULD be like this in the family.” The members of this family assumed that what they thought ethically best is what would be done.

Even when parents asked their children if they were willing to donate, they knew they would almost certainly override any refusal. The costs of donation for the donor child, including the need to keep free of infection before the donation, some fear, pain, risk of medical complications, and worry about whether or not the donation will help, paled in comparison to the risk of death to the ill child without the sibling’s donation. Nonetheless the parents were aware of the costs to the donor child. For example, the mother in the Kelling family speaks about her donor child: “And they hadn’t prepared her for it, not properly I felt, that now she- and that was really bad for her, so she was afraid of falling asleep and it hurt and actually there was nothing in there but she’s a child and there was still that feeling there was a needle in her.”

All of the families interviewed had a child who provided bone marrow for a sibling. Although I describe them as ‘donors’, following the practice of the interviewers, it is unclear if all should be seen as donating, if that is taken to involve making an unconstrained choice. Parents either simply expected their children to donate, or applied emotional pressure. This is because medical professionals often suggested, or at least were interpreted as saying, that having a sibling serve as a donor was ideal. The mother in the Zucker family describes a doctor they consulted: “he ALSO can’t understand how, like, anyone can go searching for an unrelated donor when you have SUCH A MATCHING donor f- like Zorro.” Despite what the families felt, one matched donor is actually as good as another in terms of survival rates. However, there are justified worries that, should the family go looking for an alternative donor rather than one of their children, suitable bone marrow might not be found, the price expected for the bone marrow and associated expenses might be high, and/or the search for another donor could lead to a delay that would compromise the health of the ill child.

While the parents were typically not prepared to accept a refusal from any of their children, the donor siblings usually cited a combination of concern for their sibling, feelings about what, morally speaking, they should do as a result, and considerable emotional pressure from their parents as their motivation to accede to parental expectations. The children agreed despite confusion and fear about what serving as a donor might involve. The donor daughter in the Kunow family says: “because then I got so much PRESSURE from (.) my parents: come on, and you have to do this, he’s your brother after all and erm (.), if you don’t do this, then erm (..), yes, then- you you won’t forgive yourself for the rest of your LIFE and come on, just do it. And then at some point I’d been put under such emotional pressure that I just said: OK, you know what, (.) you’re not going to give up anyway and I don’t want afterwards to have to take responsibility.” This donor describes a complex mixture of bowing to parental pressure and acknowledging her ethical obligations, with her references to not forgiving herself and not wanting to take responsibility for a bad outcome.

The fact that bone marrow donation involves incorporating bodily tissue from another person into one’s own body, and having that tissue function on an ongoing basis, complicates how family members think about both unrelated and familial donors. Some families may find it more reassuring, apart from largely unjustified beliefs about the greater efficacy of familial donations when it comes to avoiding tissue rejection, to accept bodily assistance from someone in the family. Nonetheless, several donors, recipients, and other family members consider it to be uncanny for a child to receive bodily tissue from another family member. For instance, a non-donor sister in the Rohde family says: “that was kind of funny, to (.) know that the cells are taken out of one of them and PLANTED into the other one, let’s say. It was (.) a bit spooky.”

People found this particularly challenging when the bone marrow was supplied by a sibling whose biological sex did not match that of the recipient child. The donor daughter in the Wahl family says: “I’m a GIRL and I’ve donated my stem cells to him, you sometimes say [turns towards her mother; MJ] you know, that erm (.) (swallows) that he now has female (laughs) stem cells or something, and now because of that some ways of behaving are eh erm DIFFERENT.” The mother in that same family says: “that something like something soft, female, is ticking inside him somehow. I don’t remember any more what it was about, but (.) erm (…) yes I can’t- don’t REMEMBER any more. Well (.) he reacted very, so very sensitively and soft, like he perhaps wouldn’t have done before.”

Many family members found this incorporation of someone else’s bodily tissue to challenge the identity of both donor and recipient. Some family members speak of bodily joining as leading to a positive psychological unification or unusual closeness between donor and recipient. For instance, the non-donor sister in the Minz family describes the close bond between the sibling who received and the one who provided bone marrow: “he saved her life and [there’s] so much (.) similarity and [they’re] so much the same that they now also share through the shared bone marrow, that is (.) something very special.” However, others speak of being teased and feeling that it is upsetting or uncanny to know that one child’s body now works as it does because of incorporating a functioning part of another family member. For instance, the bone marrow donor in the Minz family remarks “my Dad sometimes makes silly comments, if it’s like (.) I dunno, if Malle, if there’s some kind of opinion about Malle or Malle is supposed to make some kind of decision and isn’t here, then he can- my Dad always says: yes, Marlena can do it, she has the same thoughts as he has, he has the same bone marrow or something like that.” The donor in the Rohde family describes her uneasy response to having her bone marrow functioning in her sibling: “Sometimes I have moments when I (.) when I- when when it becomes so CLEAR to me or when I (.) suddenly realise that I am actually in my sister. And then erm (.) then I also ask myself how much of ME is now in her or (.) somehow? Does it now have different effects, I mean not just on her blood, erm but also somehow on (.) her herself or on her personality or something.”

Several donor siblings speak of worry that their gift will not save their sibling, and could even make them worse, and children whose siblings died despite receiving bone marrow are left feeling guilt, even if they know they should not. The donor daughter in the Rohde family says: “it’s also important to know that, if something goes wrong, that you yourself are not to blame. I mean (..) THAT could always happen and then (.) you should- I mean, and then (.) you really have to see that you somehow get rid of these feelings of guilt or whatever.” Even those whose bone marrow helps to save their ill sibling can feel ongoing worry that their bodily tissue won’t perform as it should in their sibling’s body.

The consequences of being a seriously ill child who has received bone marrow from a sibling, or being the young sibling or parent of that child, are long-lasting. They could include resentment of a child who receives bone marrow from another family member but does not go on to behave or appreciate life in a manner expected by other family members. Fortunately, they may also include some positive developments such as enhanced family unity and greater appreciation for being able to enjoy mundane pleasures. The mother in the Speidel family says: “Other things are more important for us and erm, it’s a pity that you have to learn something like that, but I think I can say that, since that first day of being ill, we as a family really have lived every day as if it were our last, every day. It IS like that.”

2 Relational Autonomy and Informed Decision Making

Having discussed how families responded to the crisis they faced, relying often on their own words, I turn now to the first set of questions I wish to explore, with a focus on factors that can undermine or support informed decision making. In the passage cited directly above, the Speidel family mother draws attention to how quickly her family’s life was transformed by diagnosis, from “that first day of being ill.” This is part of a pattern of families understanding the temporal dimension of their child’s serious illness as involving a shockingly sudden diagnosis, accompanied by the need to act swiftly to initiate treatment that might prove the difference between death and life, and the associated feeling that one’s actions are scripted with no real choices are available. It usually takes time to adjust one’s habits and expectations to a dramatically altered reality, and yet many of these families felt as if they had no time, and were expected both to quickly understand the nature of their child’s illness and any treatment options, and to make speedy decisions. This often extended to the involvement of a donor minor child, who was expected to volunteer or assent to donation despite fear and confusion about what their role meant and what its long-term consequences would be.

We typically assume that informed consent to medical treatment requires understanding of an illness or condition, awareness of the options that could be therapeutic, along with a clear understanding of the consequences of refusing to use some or all of those options, and the risks acquired by making use of them (Beauchamp and Childress 2012). These are competency conditions. We also generally assume that decision-makers are deciding on their own for themselves or for somebody for whom they are serving as a substitute decision maker. Finally we assume that they are not acting in circumstances in which they are either coerced or so badly deceived that they cannot adequately pursue cares and commitments which they find personally meaningful. These are conditions related to the authenticity of their commitments. In the absence of evidence of coercion or deceit, medical personnel will typically assume that authenticity conditions have been met and worry only about their patients’ competency.

However, the situation in these families reveals that often two individuals, the parents of the children involved, will be making decisions, and they will be making decisions that take into account not only their seriously ill child, but also their other children, both when they are tested to see who might be a good donor, and when one is chosen to donate. We have seen above that as a result of this complexity, frequently children feel pressured and uninformed, parents realize uncomfortably that they are expecting one child to make sacrifices in order to benefit another, and no or very little discussion takes place. Although the impact of the donation sometimes includes a sense of blurred boundaries between donor and recipient, and some significant fear and worry, in addition to short term pain and risk, families understandably do not focus on the negative impact on their donor children. Because parents feel rushed, pressured and incredibly worried about their sick children, it appears likely that their decision making might be less competent, and autonomy more compromised, than would be ideal and also less than would be feasible if they were given some time to reflect and some support with their decision making.

Most often, when we think of compromised autonomy in a context of medical decision-making we focus on the patients themselves and want to be sure they are able to make decisions about options they understand in a way that reflects what is important to them. We worry about factors that can make it difficult for them to understand their options, both in terms of medical risks and benefits, and how the different options fit with or could undermine things they value. Carel et al. (2019) speak of patients’ epistemic deficiencies produced by pain, distress, and “the lack of sufficient time to probe the decision with a health professional.” (377) However, entire families are likely to experience epistemic deficiencies, including parents who are expected to make decisions for more than one of their children.Footnote 2 Parents will typically be emotionally overwhelmed by a diagnosis that means their child might die, especially when they have not had time to adjust their understanding of what is happening to the family. Feeling as if they have no time to make decisions, let alone understand their risks and implications, is a source of epistemic deficiency and therefore compromised autonomy. Being expected to represent the potentially conflicting interests of minor children is another potential source of compromised autonomy.

Theorists of relational autonomy stress that we not only develop the capacities and resources we need to make informed and autonomous decisions by being raised by people who help us develop them, but also often need other people on an ongoing basis when we make major decisions, especially under stressful conditions. As one such theorist, Mackenzie, writes, an adequate understanding of the competence conditions for autonomy, must recognize “the extensive interpersonal, social and institutional scaffolding necessary for the development and ongoing exercise of the complex cognitive, volitional, imaginative and emotional skills involved in self-governance.” (2014, 8, my italics) When we face overwhelming emotions, are stressed, and need to make quick decisions, our identities are disrupted and our ability to become informed and to evaluate our options is almost certainly decreased. Access to emotional support, and to accounts of the experiences of other families who have faced similar circumstances, could facilitate more informed and collaborative decision making. It could also guide medical professionals to help families understand when the need to make a quick decision truly requires immediate action and when it can permit taking a brief time, even if only a few days or a week, before a family commits to a course of action.

The research project that prompted this volume, and other sources of access to people who have experienced what they have and are willing to share their experiences, could help provide highly relevant information to families making these difficult decisions. This could include learning what a child might be worried about, whether the ill child, the potential donor child, or other children in the family. In addition, medical professionals could learn more about the attitudes and concerns of the families they interact with, and more sensitively respond to their patients and their families, especially if they can draw upon external resources, such as experts in medical communication with children of various ages. This information could particularly help families who are already aware that their decision making is ethically fraught. For instance, the father in the Wahl family says: “Is it actually somehow permissible, erm, to use this- a child as a construction site for the other?” The donor child in that same family speaks of wondering if she was now a “spare parts depot” for her ill sibling. Since parents and children alike may be confused, pressured, and uneasy, their communities and healthcare teams have a responsibility to offer resources to help them better understand and cope with their situation, both to reduce their distress, and to enhance the autonomy of their decision-making.

3 The Ethics of Care and Meeting Needs Within the Family

Human beings are all vulnerable and dependent. Our needs for care vary throughout our lives but are always present; therefore detecting those needs and responding by providing care are among our most significant moral responsibilities. An ethics of care, also known as care theory, need not deny there are other significant moral categories that correspond to other major areas of moral responsibility. Indeed it is important to ensure that those who provide care are not unjustly burdened, with some providing far more unpaid care than others. Far from care and justice being in necessary tension, there are important connections between the two, and working to ensure that private, familial provision of care is supplemented by other forms of care is an important aim for an ethics of care.

An ethics of care can be an important resource to bring to bear in analyzing the families who are the focus of this chapter as not only does the ill child require care, but also their illness can increase their whole family’s need for care. The entire family will face a dramatic and unwelcome transformation of daily life while the parents must make life altering treatment decisions. When I say that the family as a whole is likely to have increased needs for care, what is meant by ‘care’? Care theorist Daniel Engster writes: “Care may be said to include everything we do directly to help others to meet their basic needs, develop or sustain their basic capabilities, and alleviate or avoid pain and suffering, in an attentive, responsive and respectful manner.” (2005: 55) What are ‘basic needs’ and ‘basic capabilities’? Needs refer to what we must have in order to function in a wide range of ways of life, and include not only things like having food, adequate shelter, and medical care sufficient to allow us to recover from significant ailments, but also feeling secure and attached to others. Basic capabilities are actual opportunities people have to do what they value. They include mobility, the ability to imagine alternatives, the ability to interact socially with others, and the ability to understand enough about one’s circumstances to make choices that aim to realize one’s goals. Capabilities can be understood in line with Martha Nussbaum (2011) and Amartya Sen’s (2001) capability approach, but readers need not agree with the specific lists of capacities Nussbaum, or any other theorist develops. What is important is that thinking about capabilities required to function in a wide range of domains of life can help us identify the skills and resources people need to be able to do things – even if they choose not to pursue activities in some of those domains.

Engster builds attentiveness, responsiveness, and respect into his understanding of care but we can help others meet at least some of their basic needs in more or less attentive and respectful ways. We can care for another in a manner that flows from valuing the person we care for, but also in manners that do not. We can also value another person, and genuinely wish to improve their well-being, without respecting them, and taking their point of view into account when we strive to meet their needs.

The relevant sense of respect I have in mind is that captured by Robin Dillon in her discussion of care respect (1992). Dillon introduces the notion of care respect to remind her readers that we can respect people who are still agents even if not fully autonomous, and that a truly caring response to someone who has a point of view must take that point of view into account. This is not to say that it is only people with partial or compromised autonomy who should be treated with care respect since care respect involves valuing another person, seeking to meet their needs, and doing so in a manner that takes that other person’s perspective into account. Nonetheless, it is not the same as more arms length respect for the autonomy of a person with fully developed capacities to understand her situation, evaluate her options, and make decisions and take actions that reflect her values. It involves active caring, or seeking to meet another’s needs, but the determination to do so in a way that recognizes the person cared for is a person with a perspective or point of view. Care respect is something we can and should demonstrate for children. Moreover, demonstrating care respect for people who lack full autonomy does not mean that we merely consult with them as a source of information about what they think and care about. It means having an open mind as to the possibility that the person who is respected may have good insights into what would help them and what makes them feel worse. It also means recognizing that we cannot have a deep understanding of what helps others or harms them without knowing something about what matters to them. We acquire this kind of knowledge about others not only by asking them to verbalize it, which can be too demanding for many adults as well as children, but also by attending to what they do and the feelings they reveal.Footnote 3 Good care involves meeting another’s needs in a manner that reflects care respect.

Since families are typically a primary site for meeting members’ needs for care, especially emotional needs, the inability to do so can be very challenging. The inability to access support within the family for one’s emotional needs, such as the needs for reassurance and connection, may be bewildering and upsetting not only for the siblings of the ill child but also for the parents. As a result, one of the most useful things we can do to support families in which all members have increased needs for care and decreased ability to provide it, is to challenge the idea that families are flawed when they cannot be self-contained about meeting one another’s needs. As mentioned above, this is in keeping with seeking a more just distribution of the work involved in providing care. In virtue of this recognition, it is important to develop informal and formal mechanisms to make external support available to all family members for their needs for care to be met. Learning from families of seriously ill children what helped them and what made them feel isolated or rejected, could let the friends and acquaintances of affected families know what to do and what to avoid. Support groups that focus on particular needs, such as those of minor children with a seriously ill sibling, can try to support these children at a time when most attention will be directed towards that ill sibling.

There are certainly other situations, besides the fortunately relatively rare cases of seriously ill children who need bone marrow transplants, in which children, and family members more broadly, suffer when families are thought to have sole private responsibility for meeting most of the needs of their members. These include other situations of sudden disruption, as when an adult family member becomes seriously ill, physically or mentally, or loses a job that provided the sole family income. However, they also include more chronic circumstances, as when physical or mental illness will not end even while it may not threaten life. Challenging the idea that parents should be able to solve all their child’s problems and meet all their needs can also address the unjust life prospects this attitude can generate for children, given how much some parents’ resources, financial, social and emotional, vary from those of others.

As is clear from the interviews, and as could be predicted, the ill child becomes the primary, and almost the sole, object of parental attention. One parent may stop paid employment, and move to another city to be with the ill child if an appropriate hospital is not available nearby. Loss of employment will strain a family’s economic resources, at precisely a time when they may be facing greater financial pressures, and this can impact other family members who perhaps can no longer afford to engage in activities they enjoyed. Even if finances are not affected, parental time and focus will be seriously absorbed, and so the other children may have to drop out of activities that were a source of pleasure, pride, and social engagement.

One of the non-donor children in the Molle family acknowledges both her acceptance of how her parents acted, which included very little attention for the healthy and non-donor siblings, and how difficult she nonetheless found it: “I think my parents couldn’t really have done anything BETTER than what they actually did, …. it’s a complete (laughs) shitty situation, like (.), anyway, WHATEVER you do, it’s always going to be stupid.” A non-donor child in the Minz family similarly expresses understanding for her parents and how difficult she found her own situation: “I COULDN’T have DEALT with things any other way, because if you believe you’re losing a child then it’s- then this child has a different status in the family. And after all I was ALL RIGHT, wasn’t I? So I didn’t have a problem with it, I was OK, despite everything (.) it was really (.) hard somehow.”

The parents may resent the fact that a child’s illness requires them to give up activities they had enjoyed, whether on their own, with the family as a whole, or with other children. Yet at the same time, they might feel guilty for missing cards night, or movies with friends, or watching their children do sports or act in a play, when they know the ill child is much more dramatically affected. Their marriage partner may be an important source of support, and yet also a source of stress and conflict. This is because the parents need to find a way to share the enhanced workload associated with caring for a seriously ill child, and are expected to help their partner while under serious stress themselves.

As suggested above, the siblings of the ill child can realize that their parents’ priorities must shift, and yet understandably would not like losing their parents’ attention. The siblings also lose the security of knowing that things are going well in the family and that their parents can protect them from danger and difficulty. It must be frightening to feel like a crisis has hit the family that the parents cannot handle alone. Realizing that one’s young sibling is the cause of that crisis, while also appreciating that the ill sibling is suffering and threatened, could be very difficult. To compound the problem, the people to whom they often turn for help with emotional upset are much less available. Even if parents manage to support the emotional needs of the ill child’s siblings, it could be very hard for those children to express sadness, resentment, or confusion. Nonetheless, if they are to be treated with care respect, those striving to meet their needs should aim to understand their point of view. If the parents cannot meet some of those needs, families should be offered support to ensure they are met.

While parental and broader community attention are likely to be more devoted to the seriously ill child than other children in the family, this does not mean that the ill child will welcome a strong focus on their illness. The bone marrow recipient in the Minz family remarks: “Exactly, yes, I’m not just the one, (.) exactly// not just the one who, like (.) was ill and did well despite that, but I also have a lot of other things that I (.) CAN do, rather than just being ill (laughs), (.) that sounds stupid, but //that’s what it is.” A seriously ill child is never just his or her illness, and having people in their lives so focused on that illness is likely to be unpleasant. Someone outside the family circle, especially a social worker or similar professional, might help the ill child access experiences that make them feel normal, and just a child among other children. Once again, the perspective of the child needs to be taken into account if they are to be treated not only with medical care, but also with care respect.

4 Gratitude and Indebtedness Within the Family

After the ill child’s medical treatment has come to an end, questions about gratitude and indebtedness may come to the fore. The recovered child or their parents may be expected to be grateful for a donation that was potentially lifesaving. Interpersonal gratitude, I have argued elsewhere, is best understood as appreciation of a real benefit, provided by someone who gives that benefit at least partly due to a desire to help someone they value and respect (Mullin 2016).Footnote 4 For instance, a woman, motivated by love and concern for her sibling, notices that her brother is struggling at work and comes up with a plan to help. She makes the offer, and her brother suggests some changes to the plan. The two of them carry it out, and the brother is more successful in his job. A real benefit has been conveyed; the motivation for the help included care and concern for the recipient, and the recipient’s perspective was considered and incorporated into the plan, evidencing respect for him. Sometimes, only some of the conditions that properly merit gratitude are present. For instance, the bone marrow donor may donate under pressure rather than truly willingly. They may act so as to please, or not worry and anger, their parents rather than because of valuing and respecting their ill sibling. In such situations, parents may appropriately be grateful but not the ill children if they are aware of their siblings’ motivations. Tense relationships with siblings are common, including when a sick child is the primary parental focus. Alternatively, the bone marrow may be given to benefit a much-loved sibling, but it may not improve and could actually worsen their health. While everyone in the family may be grateful that the donor tried, and experienced pain, worry, and feelings of guilt at the failure of the transplant, the bone marrow would not be a real benefit. Any gratitude would be for the effort rather than the result.

When gratitude is appropriate because its conditions were met in a manner that the beneficiaries can recognize, this can have positive effects. There is considerable evidence that it can be life enhancing to experience gratitude in the aftermath of receiving a gift that provided a real benefit, and was provided because one was valued and respected (Wood et al. 2010). Positive impacts associated with adults’ experiences of gratitude include increased life satisfaction, and studies of gratitude in children suggest that it has a similar impact on them (Froh and Bono 2011, Froh et al. 2008). Evidence suggests that gratitude expressed in early adolescence correlates with life satisfaction, and social integration (Froh et al. 2011, 289).

However, if one lives full time with one’s benefactor, and this benefactor is a sibling with whom one has both joyful and more conflicted interactions, the recipient of the gift, in this case bone marrow, may occasionally end up feeling less grateful and more indebted. The distinction between gratitude and indebtedness is discussed in psychological literature (Tsang 2006; Watkins et al. 2006) and I have discussed it in previous work (Mullin 2016). When we are grateful, we feel not only that we have been provided a benefit, but also are valued by the person who gave it, and are disposed to value that person in return, because they helped us and did that partly or wholly for our own sake. We may be very pleased to be able to ‘return the favour’ but do not feel expected or morally required to repay our benefactor with goods or services of equivalent valued to what we received from them.

By contrast, when we feel indebted, we feel expected to pay off our debt, and do not feel that the benefit was provided to help us by someone who cares about our well-being, but instead that this was part of an expected quid pro quo. The recipient in the Kirstein family expresses resentment of her sibling’s expectation that she owes him now: “I can’t owe him erm (.) my whole life long erm- I mean that he like, I mean that I have a DEBT towards him or something. That can’t be the case, can it”.

Far from enabling well-being, feeling indebted can be an unpleasant burden, and can threaten a previously existing relationship. While people are generally happier when they notice and appreciate the good things that others have done for them, at least when those others were motivated to provide a benefit to someone they value, indebtedness is not so positive. It can hang over a person, always there, always owing, especially when the benefit is as significant as the provision of bone marrow. In this case, the donor, recipient and other family members may all feel resentful. For example, the bone marrow recipient in the Kirstein family was suicidal for a time, and this was resented by other family members, including the donor who says: “you see how erm the person whose life you’ve (.) well indirectly perhaps you’ve saved, (.) erm throws away their life, or tries again DELIBERATELY to destroy it, and you want to prevent that.”

Fortunately, the other families studied did not struggle with resentment and feel owed or indebted. Instead many focused on the positive aspects of the bone marrow donation for the family as a whole. Gratitude, rather than indebtedness, seems relevant to their responses. Of course, motivation to do anything for others is almost invariably complex, and a mix of altruistic and self-serving motives may be present. But in the case of bone marrow donation, so long as one of the motives was a desire to help one’s ill sibling, to have them feel better and recover, and the sick sibling was showed care respect, this should suffice to motivate gratitude.Footnote 5 Given what we know about the many positive effects of experiencing gratitude, both in children and in adults, it is important for families to have a chance to focus on gratitude and those they feel grateful to. If the family is encouraged to experience or discuss gratitude, it would be useful to contrast gratitude with indebtedness. No doubt any conversations on this complicated topic, or efforts to encourage gratitude, could be professionally facilitated. Bone marrow is a gift no one should expect to repay or be repaid.

Families should be counseled not to expect the child who received the bone marrow transplant, and survived, to feel they owe the donor. In particular, children who receive bone marrow from a sibling should not be expected to live their lives in ways that please their sibling or parents. Parents are very likely to have goals for their children’s lives, and it would be difficult to see a child whose life had been saved develop poor health habits or suicidal thoughts. However, pressuring them not to do so because they should feel indebted, and duty bound to repay what they have received with good behaviour – is not only likely to backfire, but also is unfair. A child’s illness is something that happens to them rather than being caused by their mature poor choices or bad behaviour, and they do not acquire a life-long responsibility to live in ways that please others as a result of receiving bone marrow. We all receive significant care as children in order to make it to adulthood, but do not thereby acquire a debt to be repaid.

5 Conclusion

As a philosopher I am trained to seek larger lessons from specific situations, but do not want to end on a note of generalizing from the experiences of the families interviewed in the interesting and important research project that generated the interview materials. Instead I would like to express my own gratitude to the people who participated in those interviews, sharing their experiences, good and bad. They have furthered our understanding of a situation which may have begun with some of them feeling like they were suddenly cast against their wills in the wrong movie, but in which they struggled forward to meet one of the most enormous and grueling challenges a family can face.