Tineke Wind Tineke Wind Sacha Ruland Fotografie

Surviving relatives positive about donation procedure

In Body
Written by  Nicole Kluijtmans Tuesday, 16 February 2016 14:17

With an acute shortage of donor organs, the implementation of an active donor registration system was once again an important topic of conversation in The Hague last week. Whereas before most organs came from patients who died as a result of brain death, now they are increasingly coming from people who died following cardiac or circulatory arrest. This is known as donation after circulatory death or DCD. Transplant coordinator Tineke Wind focused her doctoral research on the critical aspects of the DCD process. One of her conclusions was that relatives of organ donors perceived end-of-life care as more positive compared to those of non-donors. Wind hopes to obtain her PhD from Maastricht University on 19 February.

The number of registered organ donors in the Netherlands has increased slightly over the past few years. People can indicate their preference for organ donation in advance or leave the decision to their loved ones. While there are currently 3.5 million registered organ donors in the Netherlands, very few cases actually lead to donation. In fact, only 265 donations were performed last year. Until the Netherlands introduces an active donor registration system (ADR) that automatically registers everyone as a donor unless they object, it is extremely important for people to make their wishes known in advance.

No regrets

'It's easier for family members to make a decision about organ donation when their loved one is alive and well. Most survivors tend to turn down organ donation if they're not sure what their loved one would have wanted. That's why it's so important to explain your wishes to your family or to register as an organ donor in advance. This will help prevent your family from regretting their decision later on,' explains Tineke Wind, who speaks from experience.  As part of her PhD research, she investigated how surviving relatives experience the current donation procedure. To do so, she approached 158 emergency contacts for patients who died at the intensive care unit at Maastricht UMC+. 'I wanted to know how satisfied these family members were with the care, the decision-making process, the termination of medical treatment and the end-of-life care their loved ones received. More specifically, I wanted to know whether organ donation changed the way relatives experienced the process as a whole. Interestingly, the relatives of organ donors experienced the care process in a more positive way than the relatives of non-donors. This was particularly true for the end-of-life care these patients received.  Whether this is the result of better communication and the extra care and attention these surviving relatives received as part of the donation procedure remains unclear.'

Half of all organs from DCD donors

In recent years, organ transplantation has focused primarily on patients who died as a result of brain death, due to the quality and condition of the organs following this type of death. But thanks to improved medical interventions, fewer people are dying from this condition. Moreover, it's now possible to transplant multiple organs from people who died of circulatory arrest (DCD). At the moment, roughly half of all transplanted organs were obtained from DCD donors. 'The Netherlands is a real front-runner in this regard, as donation has been embedded in our legal system and our hospitals are equipped to handle organ donation. We also have an excellent national protocol governing organ and tissue donation, with guidelines that clearly describe the applicable procedures.'

In the Netherlands, the doctor who meets with the family to discuss the termination of medical care is also the one who raises the issue of organ donation. This only happens if the organs are viable and if the patient did not oppose organ transplantation in the donor register. If the family consents to the donation, the transplant coordinator becomes involved.

Preliminary research

'We go to the hospital to assess the donor's prior medical history. We determine which organs are suitable for donation and carry out tests to assess the quality of those organs,' explains Wind. 'Of course, everything is discussed in detail with the surviving relatives. It's important to make sure the family is informed of each step in the process. For example, why we're taking blood samples or an ultrasound or a chest X-ray. We then send the electronic patient file to Eurotransplant, which is responsible for managing the donor waiting lists and determining who is eligible for the organs. The transplant is usually carried out four to six hours later in the hospital where the donor patient was admitted.'

Some donors are deemed unsuitable before or during the donation process. 'An important transplant condition is that the patient died within two hours of terminating medical treatment. If not, the organs are likely to be damaged. This process takes longer for one in five patients, which means the transplant team and the recipient's medical team leave empty-handed. Unfortunately, the exact time of death is hard to determine, which is why we start the procedure just in case,' explains Wind. 

New protocol

During her PhD research, Wind found that medical professionals were hoping for a national protocol to help them determine death by DCD. This protocol is on its way. 'It’s currently being developed and has nothing to do with my PhD study,' Wind says. 'I was already a member of the Health Committee, which worked on revising the legislation governing organ donation at the request of the minister. As a result, the brain death protocol was revised based on recent developments and a DCD protocol was introduced. The new act will be formally implemented before the summer.'

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