Transcript of EenVandaag report on Organ Donation after Euthanasia 08-04-2017 00:00 Peter Veen (ALS patient): I had hoped to achieve more in my life. But this is something I can pass on. I can leave something behind that’s valuable. 00:13 Reporter: Peter, 45 years old. He is divorced, with a son, and worked as a painter. Until the point, three years ago, when he was diagnosed with ALS, an incurable disease that is causing his muscles to stop working, one by one. 00:28 Peter Veen: I can still move my legs a little. But, the things I could do before, well, my quality of life has really gone down. You can get sentimental about it, but I’ve just been unlucky. That’s my story, nothing more and nothing less. 00:48 Reporter: The life expectancy of someone with ALS is three to five years and immediately after his diagnosis Peter takes a decision. When the time comes, he wants euthanasia and he also wants to donate his organs. 01:00 Peter Veen: It’s too late for me, but I can pass on my organs. And to me that’s a really good thing. 01:08 Reporter: Yes, is that important? 01:10 Peter Veen: Yes, that’s important to me. Because you… because I have personally experienced what it means to not have that. 01:22 Reporter: To, to have no future to look forward to. 01:25 Peter Veen: Yes, but for me there’s no solution and with the organs that are still good despite ALS I can give other people hope. 01:40 Han Mulder (general practitioner): Peter said, I really want to donate my organs after euthanasia. I thought, well that’s a good, genuine wish and I looked into it and it wasn’t possible. 01:50 Han Mulder (seen greeting patient in waiting room): Hello. 01:51 Reporter: Han Mulder, Peter’s GP, discovers a lot of resistance from the hospitals to carrying out Peter’s final wishes. Euthanasia and organ donation are two separate worlds that have contradictory requirements. When you’d expect that the doctors would be really pleased if more organs became available. 02:05 Han Mulder: Euthanasia is always a difficult and awkward topic, in hospitals too, even now. And on top of that after the euthanasia you also want to donate the organs to put two difficult, or at least controversial, procedures together. Well, that sets off all the alarm bells because they represent two different interests. The GP represents the interests of the euthanasia patient and doesn’t actually want to have to think about the consequences after that. While on the organ donation side the main concern is the interests of the receiving patient, the organ that he needs. And as you can imagine these are two very different approaches to the problem. And there are areas where these interests conflict. 02:46 Reporter: Each year euthanasia is carried out around 5500 times on average. Since 2012 only 28 people have donated their organs after euthanasia. Although the wish to donate their organs is more common among euthanasia patients. As with the terminally ill Arnold Mulder in 2015. He wanted to donate his kidneys but the hospital did not want to accommodate this wish, as his family explained on the television programme, Jinek.
03:12 Arnold Mulder (terminally ill patient, recorded in 2015): My impression is that too many kidneys have been lost in this region just because euthanasia does take place but donation doesn’t. 03:23 Eva Jinek (presenter, Jinek television programme): How did he react when he heard that he couldn’t be a donor? 03:26 Leona Mulder (family member, interviewed on Jinek television programme): Well, he said ‘I’m just so disappointed’. Just so surprised. Because so many people are asking for kidneys. That this can happen. 03:36 Arnold Mulder: I’m not afraid of death but when I die I do want to pass something on. 03:42 Reporter: But are a sick person’s organs still suitable for transplantation, many people wonder. 03:48 Han Mulder: With ALS, organs are in principle good enough to donate. This has to do with the fact that ALS is a disease affecting the control system, so the problem does not lie in the organs themselves but in the control system, which is where it goes wrong. So the organs themselves, they are just fine. As an ALS patient you can donate your kidneys, your pancreas, your liver. 04:10 Reporter: With Peter’s wishes in mind, GP Mulder becomes chairman of a committee intended to draft clear rules about organ donation after euthanasia. 04:19 Han Mulder (seen arriving at Peter Veen’s house): Hello. 04:20 Lady opening the door: Good afternoon. 04:21 Han Mulder: How’s it going? 04:21 Lady opening the door: Fine. 04:22 Reporter: That report was presented last Monday and is intended to make the situation clear for patients and doctors. 04:28 Han Mulder: For the patients, it’s that there’s a sound and responsible way for their wishes to be fulfilled, and by that I mean at their own request, without being put under pressure and that they feel free to pull out right up to the last moment. And for the hospitals and the doctors, that a sound protocol is available, satisfying the requirements that apply. 04:52 Han Mulder (seen greeting Peter Veen): Hi, Peter. 04:52 Peter Veen: Hello, Mr Mulder. 04:54 Han Mulder: How’s it going? 04:55 Peter Veen: I’m having a bit of trouble with phlegm. 04:58 Han Mulder: Hmm. 04:59 Peter Veen: So if you could take a look at that? 05:01 Han Mulder: Let’s take a look. 05:02 Peter Veen: The guideline is incredibly important. That gives the people involved in this process certainty. It gives me and my family certainty too. So that nothing unexpected happens.
05:21 Reporter: But there are aspects that increase the burden for a patient who wants to donate his organs. A medical examination in hospital is required beforehand, the euthanasia has to take place in hospital instead of at home and after the patient passes away there is only a short time available to say goodbye to your loved one because the patient has to go to the operating theatre. Peter knows exactly how he wants his final moments to take place at home. 05:41 Han Mulder (seen examining Peter Veen): Let’s have a look. 05:43 Peter Veen: I’ll be given a sedative. Then I’ll have time to say farewell to my family and be transported to the hospital asleep. The euthanasia will be carried out there. The organ donation will then take place. And I’ll be brought back home again at the hospital’s expense. 06:12 Reporter: Last Monday evening, Peter passed away in the way he wanted. First, he was given a sedative at home surrounded by his family. After that, his GP carried out the euthanasia in hospital. 06:25 Reporter (addressing Han Mulder): And is it in the back of your mind as you do this ‘OK, it’s going to happen now; so then there will be four organs that can save other people’? 06:31 Han Mulder: No, absolutely not. That’s one of the fundamental ethical points in this guideline. I don’t focus at all on the consequences of the procedure. I’m focused on you as a patient who no longer wants to live and that’s why we’re going to take this step together. That’s what we’ve progressed towards together. And the fact that this then has a positive consequence, because the patient really wanted to do it in this combination, with organ donation, that’s nice and it’s an incidental benefit but I won’t give it a moment’s thought. 07:02 Reporter: During the past three years there have been other times when Peter wanted to take the last step. 07:06 Peter Veen: Those moments were there before, but I never had the courage. I tried to take the step rationally, but I was just too scared to do it. 07:21 Reporter: It’s quite a big thing, isn’t it? To say ‘Now I’m going to end my life, I’m stopping now’. 07:27 Peter Veen: Yes. But if life doesn’t offer any more than this then I hope that I can leave this world with a smile.