Keywords

Medical decision making is often complicated. Ideally, full and comprehensive information and exploratory discussions enable the patient to make an informed and balanced decision regarding her or his health care. This ideal of informed consent often seemed unattainable in the families we studied, due not least to the immense time-pressure because treatment of the sick child had to start immediately.

In paediatrics, making decisions about medical interventions is far more complicated than in adult medicine – as there are major ethical, legal and personal challenges. In general, the role of parents is to make decisions for their minor children that are in the child’s best interest (present and future). Their responsibility towards the ill child generated the strong wish for a BMT and a sibling donation in many families. But parents are equally responsible for their other children, the donor and non-donor siblings. For the potential donor, donation involves an invasive intervention with no medical indication or justification for the donors themselves. That is one reason for having enduring ethical and juridical discussions about sibling donations by minors.

The purpose of this section is to examine in more detail how family decisions were made, and how they have been and are judged by family members, both at the time of the illness and in retrospect.

1 Decision Making About Treatment

In view of the severe life-threatening illness of the child, none of the parents who took part in our study hesitated to begin medical treatment immediately. Their goal was the survival of the sick child, and to reach this goal, some parents explicitly advocated choosing the strongest possible therapeutic option. Overall, however, parents did not have the impression that deciding about therapeutic issues was in any way an option. This impression was also due to the fact that the treatment of cancer (the diagnosis in many families in our study) followed strictly standardized protocols. Accordingly, there were in reality few decision-making options for parents. Many of them therefore found it superfluous and almost absurd to be asked for their consent over the many subsequent steps of the treatment. In their view, they had no alternative in their situation and they would have signed anything, even if they did not fully understand the risks and side-effects of the therapy.

Mother: She HAS to have it, she has to have thrombocytes too and by the time of the BMT she was having it every day. Then you don’t think erm at ALL, you HAVE to sign it every time, yes, I say (.) WHAT FOR? I say, why don’t we do this on the first day and on the last day, because she has to have it anyway, what CHOICE do I have. I don’t have any other choice. Then you also think, you’re not allowed to think about it at all any more. Even erm (.) side effects of some medications, I didn’t read it. I say, what kind of CHOICE do I have? She HAS to have it, WHATEVER they give her, I have no other choice, or I let her die, I mean, I would like her to live, so I have to accept all that they give me, I don’t have any other choice and that’s why you don’t think about it any more. (Jaschke)

1.1 Decisions Under Time Pressure

A particular difficulty arises from the fact that all decisions – both about therapy and about the new design of everyday life (who takes on which task) have to be made under immense time pressure.

The family had no opportunity to familiarize themselves with the diagnosis, to obtain medical information or a second opinion, or to discuss the needs of individual family members. This contributes to the fact that the parents did not even feel they were making decisions at all, but instead found themselves in a situation in which they could only consent to what was now presented to them as necessary and without alternative.

Several families in our study describe their feeling of finding themselves in a “race against time”, in which every day, every minute counts and any hesitation ultimately presents a threat to the life of the sick child.

2 Decision Making About the Transplant

With one exception, all families said that deciding to conduct a BMT was not considered as a decision but as just another step in the therapeutic process, without alternative. At this point, parents usually referred to the doctors who presented a transplant as essential.

Recipient: [We] had no other choice I mean from the medical side (Kötter)

The only family who described a very intensive decision-making process about BMT stands out from our sample in two ways. First, this family was interviewed shortly before the planned BMT, and second, in this family an unrelated donation was planned (sibling donation was impossible for medical reasons). We do not know whether the other families who were interviewed after their BMT had previously undergone a similar decision-making process about it.

However, unlike the other cases, this family did not think solely in terms of “survival” or “death”, but also raised questions about potential limitations on quality of life as a result of the BMT. Against the background of a rather small chance of curing their daughter’s disease, these parents weighed up the consequences of BMT. On the one hand, the procedure would increase the chance of curing or at least halting the progression of the disease; on the other, the BMT would mean a severely reduced quality of life for their child, who at that point was almost unaffected by their illness.

2.1 The Decision About Sibling Donation

Like the decisions about medical treatment and conducting a BMT, the decision to have family members typed and – if they match – used as donors was not interpreted as a “decision” by the family members. Medical staff and the families themselves considered it self-evident that the family members would do so.

In the narratives of the families it became very clear that they preferred a sibling donor over an unrelated donor. This was strongly supported by the fact that doctors referred to sibling donations as being superior to third-party donations. Many families said that the medical staff congratulated them if a sibling was found to be compatible as a donor, and spoke of winning the jackpot. To label it that way made it almost impossible for the families not to seize this “great opportunity”.

In some families, the parents had thought in advance about the problems that donation could present for the donor. Possible physical issues and mental consequences, especially if the BMT were to be unsuccessful, were addressed. They anticipated that the donor child might feel guilty if the transplant failed to have the hoped-for success. But only a few families spoke to their children about this possibility before the transplant.

2.2 The Rationale: The Advantage of Sibling Donation

Apart from the medical benefits, there were other reasons behind the families’ view that a sibling donor was preferable. In particular, it was the security of having the donor child available: the risk of withdrawal of consent is much higher for third-party donors than for sibling donors.

The advantage of a sibling donation seemed so overwhelming to the parents that they sometimes treated medical risks to the donor child as secondary, as the following quote illustrates:

Interviewer: But that means, an unrelated donor for David wasn’t up for discussion at all?

Father: No. Look, it was quite clear that it would work with Dorothea, now I’ll have to think, did they, I don’t remember at all whether they erm looked further as well, because the problem was that Dorothea was relatively small and that they, let’s say, needed a particular amount and erm yes, then erm (.) yes it wa- it was a bit borderline, didn’t- don’t know how many millilitres they erm were ALLOWED to take of this bone marrow. It was specified precisely, it was erm was also a situation like, Dorothea had to (swallows) was supposed to donate and then there was a kind of- kind of consultation and then a erm a doctor was there who was basically well, on Dorothea’s side and then erm well, who was basically supposed to represent [her], that erm yes, well she’s small and erm you can’t just take vast amounts (laughs) of bone marrow from there and well, he saw it from her side, and I, said, of course we’ll take and erm and if- I dunno, if you’re allowed to take 40 ml but we need 60, we’ll take 60, like, that’s clear. You want to help another child and you hope that erm nothing happens to the other one. (Dietrich)

A further advantage was that some families hoped that donations within the family would strengthen the bonds between the whole family and/or the siblings.

2.3 Involving Children and Adolescents in Decision-Making Process?

In the literature and in the accounts of clinical practice that we heard, there is an enduring debate about whether and to what extent children and adolescents could and should be involved in medical decisions relating to themselves.

The way in which information is handled and the extent of involvement in decision making of course depend on the age and developmental status of the child(ren). Beyond that, we could see a recurring pattern in nearly all families we interviewed in which families and medical staff framed the sibling donation as a matter of course, as following an unstated rule. The risks to and side effects on the sick child and the donor were weighed against each other, and after consideration the parents concluded that a BMT with sibling donation should be carried out. Family members pointed out that the donation process itself may be unpleasant for the donor, but the burden overall was seen as very small. It was seen as more than justified by the goal of saving the life of the sick sibling. This interpretation of the situation implied that the parents had to talk to the (potential) donor about the donation, and the child was usually also “officially” asked whether she or he agreed to donate. However, everyone knew that a negative answer to this question was not possible. Many parents stated that they secretly thought about what they would have done if the potential donor had refused the donation. Parents were aware that they were putting pressure on the donors, and several parents made it very clear that if the child had refused to donate, they would have been prepared to override the refusal.

In our study, two siblings refused donation at first. Later, however, both children donated, saying that the pressure on them had been too great and that they saw no chance of carrying out their refusal. In the interviews, which took place some years later, both said that they were happy to have donated.

It sounds as if the donors were retrospectively justifying the pressure to donate that was exerted on them and the coercion that they felt.

Donor: and then in that situation my parents had no better idea than to pressure me: come on, DO IT, and that is your brother. I mean sometimes that sort of pressure isn’t such a bad thing, because it can also simply (..), well sometimes it can lead to something good, because the- because the parents do always know best, what’s good the the children and what isn’t. And in retrospect I do have say it was GOOD: I mean for one thing it was really good for me that they pushed me towards it and said, come on and erm, do it now, because I shudder to think how it would have been if they hadn’t applied any pressure at all and I’d said I don’t want to do it. (Kunow)

2.4 Evaluation of Decision-Making Options and the Decision Made, in Retrospect

In retrospect, families depict a situation in which they had little decision-making latitude. They felt as if they had to fit into the medical system and its scripted logics. Some families found the lack of real choices difficult and unsettling, but others felt relieved.

Only one family in the interview expressed doubts that the decision to conduct a BMT had been the right decision. Interestingly, this was one of the families whose child died years after the BMT as a result of GvHD.

Father: The bone marrow transplant, that really gave us hope, but when it went on with the the GvHD, I sometimes asked myself: was that the right thing, the bone marrow transplant? (..) because we’d already it was erm was my brother-in-law (sniffs), the er the- the the brother whose son also had leukaemia. He was in (.) in city F in paediatric oncology unit or the hosp- in the children’s hospital, he didn’t need a bone marrow transplant. (Kunow)

The correlation between the assessment of the outcome of the disease / BMT and the appropriateness of the decisions made at the time is obvious and not very surprising.

Donation within the family was considered by many family members in retrospect as very positive.

Mother: so now in retrospect I’m somehow glad that it wasn’t a stranger, because that’s a person who we maybe never get to know. You can of course get to know them afterwards, but even, if maybe you never get to know them it’s still someone who suddenly belongs to the family, regardless of who it is and (..) that’s how it would be at least for ME and to be honest I’m now really glad that I don’t have to deal with a total stranger and I always think: who was that and who is that actually? (.) very glad, to be honest, that it stayed in the family. (Rohde)