Sensitive questioning in the formal consent process

The interviews did not specifically focus on the formal consent processes that a DTC has to undertake in accordance with the Human Tissue Act 2004 (discussed in Chapter 1). However, a very important issue that emerged from one interview warrants some further discussion. Indeed one of the main reasons why Ruth (Raymond's wife) participated in this study was so that she could tell me about the “awful” experience when the DTC asked her to complete the formal donation paperwork which had to be completed despite her husband being on the ODR. Ruth and her family felt that the organ donation paperwork process was really difficult, unnecessary and stressful.

They assumed that because Raymond had registered his wish to donate via the ODR that they would not have to go through what they did.

During the formal DTC consent process with the family a patient assessment is carried out. The DTC has to ask the family a series of questions relating to the donor’s past medical history and also social and behavioural questions, such as the donor’s smoking habits, alcohol consumption, taking illegal substances and sexual behaviour (such as extra-m arital affairs, use of prostitutes and homosexual behaviour). DTCs are trained to approach the family in a way that recognises the sensitive nature of asking such questions, but, in Ruth’s experience, this part of the donation process proved very problematic for the family.

Ruth: The approach was fine, it was the paperwork. Because like I said, if Raymond had had all these extra-marital things, I would be the last person to know. Basically, bless her, Donna (DTC) was sitting there with a tick list ’ can we use this, can we use that?”.

I asked Ruth if she thought the DTC perhaps was nervous or not very experienced.

Ruth: She was very shy. Should we say “very wary of not hurting me and pushing me”. No, she was very nice, it was not her fault, and she had to ask the questions. I could hear my sister and friends in the background saying “Oh my God”. My friends were freaking out, but it was so ridiculous it was upsetting me, and my friends and family were very upset... I

have no complaints about how we were treated in any way apart from the paperwork. It’s just the business of the card and the questions.

Although there may have been an issue with the level o f skill the DTC had when asking the questions, Ruth’s concern was not with Donna (the DTC); it was the actual process which contributed to her stressful situation

8.7 Discussion

This chapter has discussed the relationship between the donor families and the DTC. Focus was placed on the DTC’s role, from approaching the family for formal organ donation consent to supporting the bereaved family through the whole of the donation process and beyond in some cases. Three main themes emerged during analysis of the data: (1) The benefits of adopting the

‘two tier’ approach for organ donation consent for the potential ED donor family; (2) the negative impact on the family when the DTC appeared unannounced; and (3) the pivotal role the DTC has, as an information provider, damage repairer and flying buttress for the donor family.

This study in keeping with other viewpoints (Rhodes, 2011) shows that the role o f the DTC is indeed complex. They are responsible for the whole donation process from taking the initial referral from the ED doctor (or nurse) that a potential donor has been identified, obtaining formal consent from the family, offering out the organs to the recipient transplant units, accompanying the patient to theatre, where the DTC will also perform the final care to the body, which includes washing and dressing the body after the organ removal operation.

The evidence in this study suggests overwhelmingly that the participant families were pleased with the care and support they received from the DTC.

Not all families’ experiences were perfect, but none of the participants directly blamed the DTC, instead it was some of the processes that they appeared dissatisfied with, as in the cases of Shamus and Mr Patel. The findings show

13 N H S Blood and Transplant are currently reviewing the whole consent process as other families have complained to the organisation about the sensitive nature of some of the questions and having to sign a consent form when their relatives’ wish to be a donor is already registered via the O DR .

that the DTC acted on many occasions as the repairer of damage caused by other ED health care professionals or processes that the family had experienced before the DTC met the family. The DTC brought with them expert knowledge that informed the families of what was going to happen. My findings indicate that the DTC’s knowledge and confidence made the families feel safe and calm and that the overall support the DTC provides to families throughout the whole donation process is pivotal to how they cope with the unimaginable situation they are in, both during the actual donation process and the grieving process post-donation. The list below shows the terms used by participant families to describe the DTC.

Safe Faultless Perfect Right balance Spot on

Compassionate Kind

Informative

Absolutely delightful Trust

Dedicated Marvellous

The data also indicates that the unannounced appearance of the DTC proved problematic for the families; they were happy to meet with the DTC, but needed to be informed that he or she was coming to speak to them, and why.

The ‘two tier’ approach, discussed in section 8.1.1 which is when the ED doctor (or nurse) initiates the donor conversation and asks the family if they would like to discuss the donation options further and meet with the DTC, proved far more favourable for families in this study. Findings demonstrated that the trajectory of events for the bereaved family indicate that a ‘two tier’

approach when seeking consent for organ donation in the ED is preferable

and more comfortable for the family for two main reasons. Firstly, because the initial conversation about organ donation is made in the ED by a caring professional who has cared for their dying relative and with whom they have already built up a relationship. Often this same caring health professional has informed the family that their relative is dying and that their is no hope hence the initial request from this caring professional appears to be seen by families as a natural progression. Secondly, it allows the family time to prepare themselves for the arrival of the DTC and the formal donor conversation during which the DTC takes formal consent. The findings indicated that when the family had been forewarned and agreed to see the DTC it provided a solid platform for the development of an honest and trusting relationship between the DTC and the donor family.

There are no specific studies that have addressed the distinct role of the DTC in the ED compared with their role in the ICU. My study has demonstrated that although the DTC is the critical link in ensuring good communication between the ED HCPs and the family, the findings indicate that their role is different in the ED, in that, unlike in the ICU they are not best placed to initiate the donor conversation. My study has identified that the ED doctor is in a unique position to play a vital role in the initial discussion for organ donation in the ED. Whereas the DTC plays the vital role of taking the formal donation consent and supporting the family through the organisational aspects and the trajectory from initial consent to organ removal and beyond.

Chapter 9