Death and deliberation: Respecting family preferences in organ procurement
Andreas Albertsen, AU / aba@ps.au.dk
To the reader: Rough draft- any comments are welcome. I hope to produce a paper around 3500
words and look very much forward to hearing your thoughts on this.
Abstract
What role (if any) should the family have in decision over organ donation? In practice the family
is often provided with a de facto veto over the transplant decision. This means that donation is
not carried out if the family objects. This raises several concerns, not least because family refusal
rates account for significant amounts of organs not being utilized for transplant in spite of the
wishes of the person who is the source of those organs. Most who uphold the view that we should
keep the family veto in place do so for practical reasons, but there has been surprisingly little
debate over the virtues of current practices. The ethical case against the family veto is connected
to issues of autonomy and self-determination often considered important in the context of organ
procurement. As many maintain that we should uphold the veto for practical reasons, the final
section address practical issues and policies which could lessen the loss of life associated with
upholding the current practice, while still giving some weight to the concerns and wishes of the
family.
Introduction
Receiving an organ holds the promise of prolonging and improving life (Long, Swain, and
Mangi 2014; Meier-Kriesche et al. 2001, 1295; Wolfe et al. 2008). All to often this promise is
unfulfilled. Every hour people around the world die while waiting for an organ transplant. For
them such transplant is the only viable option left. Unfortunately demand for organs
continuously surpasses supply. This brings forth questions regarding how to distribute
available organs, but also different proposals aimed at increasing supply. Organs are not like
other goods. They are part of us. What is done to our organs, and how society conceives of
them, says a great deal about how we, as people, are regarded. We see those sentiments when
people object to conscripting organs out of a concern that they do not wish their organs to be
considered as state property, and do not wish themselves to be considered spare parts of
others.
This article addresses one specific part issue in relation to the supply of organs.
One that is receiving increased attention these years, and which is connected intimately to
other more prominent debates of organ procurement. The specific debate addressed is that of
family influence in determining whether a deceased person’s organs are utilized for
transplantation. Should we care what people’s relatives think, and perhaps less polemic, how
and when should we do so. From some perspectives, it may be clear that the family has a say
in these matters. If for example we adopt Ramsey’s view that the death is a matter for the
family, it might be easier to understand his position that it is in the family we should decide
questions of donation (Ramsey 1970, 208). But for better or worse, modern bioethics and
medical ethics puts a strong weight on individual autonomy and the preferences of the
individual. From that perspective at least, allowing the family to veto the explicit wish to
donate might seem to thwart the autonomy of the deceased.
The issue of family influence will be discussed here through addressing the
ethical perspectives of a family veto. The term designates arrangements in which the relatives
of the deceased are able to block the use of organs for transplantation. Different systems for
organ procurement assign different roles to the family, and conversely different obligations to
the transplant hospital and its staff.1 In some countries the family should be consulted, while
in others this is optional. Some countries, such as Austria, has tried to eliminate family
influence by law. In practice much research on actual medical practice confirms that the
opinions of families are often both sought and given weight in deciding whether to perform
the transplant. This is especially the case when people have not explicitly decided what should
be done (Janssen et al., 2004). But importantly, families also matter when people have made
such wishes explicit. UK evidence indicates that 10% of registered donors have their wish to
donate overruled by their relatives (Hope 2012; Isabel and Bennett 2011; Smith 2011). Those
numbers raise a number of questions. One is the broad question as to whether we would be
able to decrease such refusal rates. The other is the ethical question regarding whether this is
actually permissible in a moral sense. Why should family wishes be allowed to outweigh the
declared wishes of a deceased person?
1
For not the paper does not address the question of delegation. Family influence seems much less problematic (and
clearly less, if at all, in conflict with autonomy) if people have simply chosen that their families are to decide on the
issue of transplantation. If we think that people have a right to decide what happens with their organs in terms of
donation, that right at least seems to be compatible by delegating that decision.
While the discussion of family influence is quite new, it connects with more
prominent debates in ways which are both interesting and has received little attention in the
organ procurement literature. A prominent discussion in relation to the organ shortage
pertains to whether we should introduce an opt-out system, where everyone is considered as
donors by default (Bird and Harris 2010; Wilkinson 2011b). Whether such a system yields a
higher number of organs available for transplant depends on a host of factors, but it is
important to note that an opt-out model is compatible with upholding an removing the family
veto (Altman 1994, 166). High rates of family refusal could mitigate the expected increase in
available organs if a system changes from an opt-in model to an opt-out model. The discussion
of the relevant merits and desirability of introducing and opt-out system should thus be open
to also discussing which role the family should have in such a system.
Others suggest the introduction of markets to eliminate the organ shortage.
Several of the proposed market models would also need to come to terms with family
influence. On one prominent proposal, we pay people to sign up as donors in order to
incentivize donation (The Council of The Transplantation Society 1985, 582). On another we
only pay when the organs are transplanted, giving the money to the estate or family of the
donor (Peters 1991). But both these suggests leaves considerable room for family influence.
How should we handle a situation where payment has been made in the past, but the family
refuses? What role (if any) should the family have when people have not decided anything,
that is, should the family be allowed to sell out organs after we have passed away if we have
not ourselves decided against that?
The family veto profoundly affects donation rates. Anyone who is concerned with
the organ shortage should take seriously the task of engaging with the practical and ethical
aspects of this. As it has been shown in the above even the more established suggestions in
addressing the shortage needs to clarify how they intent to deal with family refusals.2 That
could surely also include Prottas’s proposal that our public campaigns to increase donation
also focus on convincing the family to respect people’s decision to donate their organs
(Prottas 1983).
2
Some might say that this is not true for models recommending conscription of organs (Rakowski 1993). And surely a
system which does not give any weight to whether the source of organs would want to have his or her organs
transplanted, would be very unlikely to give weight to family objections. Nonetheless they should justify why this is
permissible and ignoring family objections is also a stand in the debate regarding how much weight to give to those
(essentially assigning them the weight of zero).
The ethical debate
The driving motivation behind discussions of the family veto is the hope that by addressing
this in a different way we might be able to increase the number of available organs (Shaw
2012). Despite this, several authors conclude that we should allow the family to veto even
explicit wishes to donate. We can identify a current ethical debate over whether to abolish the
family veto. The question taking center stage in this debate is whether we should allow
families to veto previously given consent (presumed or otherwise). We can identify two kinds
of reasons provided for accepting such a veto. Wilkinson argues that we should do so, because
otherwise the donor-rate would fall because of public outrage (Wilkinson 2007; Wilkinson
2011a, 86). De Wispelaere and Stirton argue that we have an ethic duty to consult the family,
seemingly ascribing a moral weight to the distress felt by the family (De Wispelaere and
Stirton 2010). To evaluate such arguments consider a popular analogy from the literature,
that of bequests.
Organ donation is sometimes discussed through an analogy of bequest. In favor
of opt-out model one could argue that utilizing organs when people did not object to it is an
introduction of a standard similar to those standards which apply, when people did not make
a will describing what should happen with their earthly remains. The bequest analogy is also
used as an argument against conscripting organs. We believe at least in the context of
bequests that there is something good about respecting the wishes of a person, even after he
has passed away. Some would connect such a belief to the value of autonomy. This distinct
value is also important in the debate between those who favor an opt-out model and those
who maintain that the opt-in model is desirable. Essentially both sides of this disagreement
maintain that we should respect what people want, but often disagree whether the opt-out
model adequately reflect this. Both the bequest analogy and the weight put on autonomy sits
oddly with the family veto, and this is interestingly since they are important to those other
discussions.
Consider the classic scene at the lawyers’ office. The will of the deceased has just
been read to the family, specifying how the valuable possessions should be distributed. Much
to the dismay of at least some of those present, the will reads that most of the earthly
possessions should go to Greenpeace. Those who are dissatisfied with this outcome protest it.
They offer a variety of reasons: They have ethical reservation regarding the organization
receiving the money or that they are against the practice of donating to charity in general and
similar reasons which do not dispute the authenticity of the will. My impression would be that
most people would think such protests should not be fruitful. That the family disagree with
how we choose to disposes of out earthly good is really not something which should alter hoe
those goods are distributed in the end. This holds notably also when their protests are not
selfish in the sense that their protests are not based on a preference for acquiring the money
for themselves.
Some might say that our reaction to the bequest case is of little value to the
discussion of a family veto in organ donation. They might object that our reaction in the
regarding bequest is based on our knowledge about what current practices and regulations
dictates. If this is all that is going on, then we should also respect current practices and allow
for family influence in organ procurement. But I would suggest that a case can indeed be made
that there is more than rule-following at stake in the bequest case. We could also say that it
has value, perhaps connected to the idea of self-determination and autonomy, that we respect
people’s wishes and stated preferences. If this is our reasons for thinking as we do in the
described case of bequest, then those wishing to uphold a family veto should either argue that
the cases are different in some relevant sense or that those values are not important in organ
procurement. The latter seems a tall order by any standard. It was noticed earlier that these
value are central to many discussions of organ procurement, the least in relation to the idea of
presumed consent.
Furthermore, if one upholds a family veto based on some notion that the wishes
of the deceased are not important, then further questions mount. The first is then, what would
be wrong with a system of conscription of organs? While one answer is available to those
supporting a family veto (that the family would object), surely there is something strange
about respecting the family’s preferences but not those of the deceased.3 Anyone who
manages to uphold that we should be more considered to the family than to the potential
donor, must answer yet another question. We often discuss this conflict only in the instances
where the deceased want to donate and the family object. But if one maintains a family veto
based on ascribing relative more importance to the preferences of the family, then how would
3
Here further discussion is needed. One could suggest that the relevant difference is that only the family is alive here.
Wilkinson has a good discussion of this, arguing that even dead people can have what he calls a setback of interests
and that those setbacks should be a concern.
one feel if a person did not want to donate before his death but his family favor such a
donation. A huge task certainly befalls anyone, who wish to describe the family veto as
ethically desirable.
It is important to notice that many who defend the family veto do so not on
distinct ethical grounds, but rather based on the view that we have practical reasons to
uphold it. They fear, to put it simple, that eliminating the veto will result in public outrage,
mistrust in the healthcare system (or specifically, the transplant system) and potentially also
in lower donor rates. As stressed above I think those who offer such practical objections
should reflect more over the ethical aspects of this practice. But as will be clear from the next
section, the discussion does not end here. The ethical discussion should be supplemented by a
broader debate over the role of the family. Even those who accept, despise the points made
above, that the family should be consulted should answer in what capacity and role we
include them in the decision process. The next section raises some pertinent issues which
should also be part of the larger discussion over the family veto.
The road ahead
This article discusses the deliberative process involved, our reasons to consult the family and
which weight (if any) we should ascribe to their preferences regarding transplantation.
Importantly, this issue raises several important practical issues which should also addresses
in the debate, as they are very much connected with the ethical perspectives of the debate.
As Prottas suggested in an early paper, the problem of family refusal prompts us to change the
way we discuss the public campaigns aimed at altering attitudes towards donation. We need
not only to get people to opt in (or, not opt-out). We need to prompt discussion in the family
aimed at decreasing instances where that decision is not in the end respected by the family.
This discussion must be informed by the existing literature regarding what affects people’s
attitude to donation (Blok 2005; Burroughs et al. 1998; Haustein and Sellers 2004). Taking
this knowledge into account may present us with ways in which we can decrease instances of
family distress, family refusal and conflicts between medical staff and family in a stressful
time.
Those who maintain that the family should have a role in the decision need to
specify not only why this is ethical desirable, but also how we should go about including them
in the deliberation. The ethical discussion above (at least) puts doubt on the desirability of an
actual veto. But this does not rule out other forms of including the family in this deliberation.
In situations where we do not know the wishes of the deceased, there are several ways to
address the issue. On a very general level we could push for establishing national guidelines
for how to handle this (Chon et al. 2014; Kmietowicz 2013), and surely also discuss the
content of such guidelines. That this may be needed is suggested by US numbers that many
transplant clinics have no such guidelines (Shaw 2012). One aspect of this discuss has to do
with providing the family with information (Siminoff, Arnold, and Hewlett 2001). We know
that many adopt a better safe than sorry, operating under the assumption that only agreeing
to donate can be a source of later regret. Should we present these people with the information
that people also regret not donating to balance their decision? There yet another aspect which
has received too little attention in the literature. Namely in which capacity we consult the
family. Research in current practice (and current law) shows that the family are often
consulted in their own right. This means that we ask them to give their own opinions and
ethical beliefs regarding donating the deceased person’s organs. But we could consult them in
yet another capacity, not as those who are to decide what happens but rather as witnesses to
the person in questions life. Ask them, that is, what they think the deceased would have
wanted rather than what they themselves believe should happen. That would, assuming some
degree of honesty on their part, be a totally different way of including the family in the
deliberative process.
Concluding remarks
In current practices in organ procurement, the opinions and preferences of the family is often
given a considerable weight. In many countries there is a de facto veto in place, where they
can even overrule the stated wishes of the deceased. Above it has been argued that such a
practice is at odds with many of the values which underscore much debate over organ
procurement. Not least those values of autonomy and self-determination. We usually care a
lot about what the potential transplant source thought of the matter. Why should family
disagreement to those whishes be held in such high regard? Why should it be that family who
decides when people have not made up their mind? While many argue for upholding the
family veto on practical (as opposed to ethical) grounds the final section addressed just that.
The purpose of the section was to show, that even if we accept some sort of family influence
on the transplant decision (perhaps in the form of the veto) there is plenty of room for
changing the administration of such practices in ways which those who argue on practical
grounds would have little reasons to object. Faced by significant family refusal rates we
should explore ways of mitigating this. Anyone who upholds the family veto only on practical
grounds should be willing to partake in those explorations.