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Dr Lindsay Carey – Hospital chaplains and organ donation

Lindsay Carey

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Matt Smith:

Welcome to a La Trobe University podcast.  I would be your host Matt Smith and my guest today is Dr Lindsay Carey from the School of Public Health at La Trobe University.  He's been looking at the role of chaplains in the hospital system in Australia and he's found they have quite a lot to do with organ donations.

Lindsay Carey:

Well, generally speaking in Australia we would be regarded as having one of the lowest solid organ donation rates amongst all the Western countries.  Ours is around about 9 donations per million of people whereas if you compared it to other countries, like Spain for example, it's around 34 per million, so there's quite a huge gap between those two donation rates. It raises a lot of questions about why Australians don't donate, and why is it that other countries have a much higher rate.  There are those middle level countries too, like the United States who have about 13.5 donations per million.  So it gives you a bit of perspective between Australia, the US and also countries like Spain, and indeed Belgium too is quite high as well.

Matt Smith:

It's not very good though when you're saying that 34 people out of a million is a high number, is it?

Lindsay Carey:

Well, it sounds odd doesn't it?  Even that sounds very low.  But there's all sorts of reasons for that, but nevertheless they've been quite successful at achieving that number, year after year, whereas in Australia we've floated round about 9 per million – the package that the Commonwealth Government has introduced to encourage organ donation has increased that slightly.  Certainly it has made the community more aware of it and they've had various campaigns since about 2008, which have improved the community awareness, but still the solid donation rate is quite low.

Matt Smith:

And even those who actually want to donate, not all of them can, can they?  So there's restrictions from that side of it.

Lindsay Carey:

There are restrictions, yes.  Well, there could be religious reasons – that traditionally has been a predominant one, although that, I believe is overrated because most religious groups are not opposed in principle to organ donation.  There are some restrictions, but that's been one reason.  Another reason has been simply that there's a fear as to what will happen with organs, and that has been verified overseas with some people having organs removed without giving approval for those organs, and organs have been misused inappropriately and so forth for various experimentation, whereas people thought that they were being used actually to donate to someone's life.  Examples in the past that have frightened members of the community to donating, so there's that fear component.  But there's also health issues as well.  Not everybody can donate, simply because their kidneys are not sufficiently suitable, medically speaking, for them to be put into someone else's body.

Matt Smith:

So tell me about the research that you've been doing.

Lindsay Carey:

Well, one of the components that we've been looking at is the potential involvement that chaplains could have in helping to encourage people to consider donation and if possible to even donate their organs.  As I mentioned before, one of the reasons that people are hesitant about donating organs is because there is a fear that somehow, that they need all their organs to get to heaven, that their body is whole and should not be in any way tampered with.  And chaplains are in a position to be able to talk to people about the theological issues, particularly hospital chaplains, who generally speaking are inter-faith trained, and understand other religious perspectives, not just necessarily their own.  And they're able to encourage people to look at the bigger picture in terms of the altruistic merits of being able to save somebody else's life, and with that particular focus, people often change their attitude about donating, and they shift from a negative view, quite often to a positive view.  But on the chaplain's role is to actually help them to proceed through that change of understanding, that transition from a negative to a positive view.

Matt Smith:

So what is a chaplain's role as it is?  What sort of support do they give and what sort of training are they provided?

Lindsay Carey:

Well, since 2002 it's been quite easy to code health care chaplains' roles.  There's four major roles that the World Health Organisation Pastoral Intervention Codings list.  The first of that is Pastoral Assessment, whereby the chaplain will initially just engage with a patient and find out what resources they might need, what their interests are, what their views and beliefs are.  And the next stage is called Pastoral Ministry Support, that is the chaplain will sometimes engage and stay with a person, or help to liaise with others, actually provide some sort of physical support or liaison to help bring about additional support a person might need.  And the next one is Pastoral Counselling and Education, so quite often chaplains are involved in helping to provide counselling for individuals who want to explore issues much more deeply than just a general assessment or a brief discussion, and they'll often quite often accompany with that counselling as an education, because some people sometimes say, well, what is the view of a particular religious belief, or what does the Bible say, what does the Koran say, etc, about, say for example, organ donation.  And the last one is Pastoral Ritual and Worship, and that is where chaplains quite often engage in ceremonies, funerals of course, memorial services, but they're also involved in baptisms, and they even do weddings within hospitals as well.  Plus there's also thanksgivings ceremonies and other types of rites that chaplains do to assist people in either celebrating or indeed, being able to relinquish and say farewell to relatives if they're in the process of dying.  So there's those four major categories and then of course there are administrative categories as well.

Matt Smith:

What you're suggesting is that maybe a bit of a marketing aspect, where they could talk up the prospect of donating organs, or at least properly inform of the possibilities.

Lindsay Carey:

Yes, well that's exactly right.  Following a pastoral assessment, a chaplain can weigh up what the issues are that a patient might be dealing with and then the patient might want to take the time to explore with the chaplain the various options, both from a religious point of view and a social perspective, about what it means to actually be involved in organ donation, or indeed, be the other way round – be a recipient of an organ donor.  That can be quite an issue for people to deal with when they're actually receiving an organ – the idea of having somebody's organs in your body can be quite daunting, and for others it's … having received an organ, how can they give thanks to that person, and quite often they can't.  The chaplain helps them to find other ways of expressing their appreciation and that's quite often done through ritual and worship activities.

Matt Smith:

So you surveyed quite a lot of chaplains for this research paper.  What sort of questions were you asking of them?

Lindsay Carey:

In overall terms we were looking at the involvement of chaplains in bio-ethical issues, full stop.  We wanted to know basically what chaplains were doing, in terms of addressing ethical issues if at all, and through that project we surveyed around a total 427 chaplains, and of those, 327 were Australian – there were 100 New Zealand chaplains involved as well.  But of those 327 chaplains, we were surprised to find that over 70% of chaplains were involved in bio-ethical issues of one sort or another.  So that was quite a surprise, because we didn't think it would be that high.  Among the New Zealand chaplains the ratio was pretty well much the same, actually, so there's an interesting trend there that we can compare between two countries.  But from that we then broke it down and we looked at what types of ethical issues they were actually involved in, and one of the things we weren't expecting was the number of chaplains who were involved in pain management, or pain decision-making, which, when you think about it, is actually quite logical, because it doesn't matter what procedure you're going through in a hospital environment, quite often pain comes up and is perceived by patients to be something fearful of or to worry about, etc, so it doesn't matter what the procedure.  Organ transplant is ranked about fourth in terms of chaplain's involvement, but there were lots of bio-ethical issues that chaplains were dealing with and assisting patients to make decisions about, whether to donate an organ, whether to receive an organ, etc, so that was the main focus.  Looking at actually what chaplains were involved in and to what frequency they were involved in these types of issues, and what they actually did within those issues.

Matt Smith:

So would you recommend as a result of your findings that chaplains get more involved, or should be given more support or training to better deal with these sort of issues?

Lindsay Carey:

Well, certainly they should be given more support.  There's no question about that.  I mean, talking about organ transplantation, it's a very complex process.  It usually starts well before the person enters into the hospital, and also, proceeds well after they've left the hospital environment, so that requires an awful lot of people to be involved.  It can't simply just purely be the chaplain, that's for sure.  The chaplain certainly needs support, and there's a lack of chaplains at the moment – there's simply just not enough chaplains to be able to cover the number of patients that might be considered eligible for organ donation.  And in one sense you could make the assumption that everybody should be eligible to give an organ and should be approached to consider it at some point in their life.  But a chaplain certainly needs support in terms of the financial support, in terms of numerical support, and also in terms of the training as well, to assist them to understand the processes involved in organ transplant, and also the various pastoral care issues that arise.  There are some chaplains of course that may not need that sort of training at all because they're not involved in organ transplantation, but nevertheless they still need to be prepared in some way to facilitate it if it does arise.  At the moment there is this reluctance within the health care field to involve chaplains, because there's a perception amongst some clinical staff in particular that chaplains would be  against organ donation, and this is also an attitude that's come through the community over many, many years, of some theological religious views that the body should not be tampered with and some indeed hold the view that in order to get into heaven you need all your organs at the time of death.  And I suppose you might have seen the sticker on the back of cars that says, for God's sake, donate your organs – heaven doesn't need them.  There is that attitude that people don't donate their organs because they think that without their kidney, or without their liver, or without their heart etc that they somehow won't gain salvation.  One of the roles of the chaplain is to reinforce, to clinical staff, to assure them that that is not the case – that chaplains are there to help facilitate the patient's wishes and to consider various issues and the options that are available to them, and certainly to deal with the religious issues.

Matt Smith:

So what is the next step in your research then?

Lindsay Carey:

Well, there's a great deal to be done.  This was a cross-sectional study that we did.  The next step is to do a longitudinal study and to actually measure the involvement of chaplains and the process that they do, of those who are extensively involved in organ transplants, and also to look at chaplains who are involved in the periphery side of organ transplants, and then perhaps to look at chaplains who are not involved in organ transplants at all and how they could possibly yet still facilitate.  It needs to be a longitudinal study, that's the first thing.  The second area that needs to be looked at is other areas outside the health care context, so for example prison chaplaincy is another area where chaplains could also influence and have a positive effect on prisoners' attitudes towards organ donation.  Another area that could also be considered is mental health chaplaincy and the periphery areas of chaplaincy that aren't directly within a hospital environment but nevertheless they can still contribute, so that we have a much wider network.  There's a great deal of research overseas that indicates that clergy and chaplains in particular can have an incredible influence on people at times of crisis.  And this is one of the things that we in Australia tend not to capitalise on, is that the chaplains are quite often involved at points of crisis when people are making decisions and when people lock down and they freeze up because they're not sure of the right decision to make.  Every day that it takes a family to make a decision about organ transplant, every day that it takes for an individual to either agree to or not agree to or however they want their particular medical treatment to take place, every day there's a stalling in that process, it costs hospitals huge amounts of money.  So this is certainly one way, if we can improve our research of how chaplains can be involved and assist the process, we also actually become more efficient and also more effective.

Matt Smith

And hopefully more people will be donating organs as well.

Lindsay Carey

Well hopefully more people will  be willing to donate organs, that's right, yeah.  It's a very intense period, probably 48 hours, it could be several months, that people make decisions,  but nevertheless it's a very intense time.

Matt Smith:

Lindsay Carey there, from the School of Public Health at La Trobe University.  That's all the time today for the La Trobe University podcast, but if you have any questions, comments or feedback from this podcast or any other  then send us an email at podcast@latrobe.edu.au.