Table 4 summarises the most gratifying and difficult aspects of the work. The positive aspects include: professional development and access to an excellent specialisation and high social recognition; inclusive, collaborative, multidisciplinary work environment for all professional categories; outcomes and successes in donations and transplants; the quality and emotional intensity and gratification regarding the relationship with patients and family members. The difficult aspects include: communicating deaths, the relationship and emotional impacts of the donation interview, and organisational and professional difficulties.

"Asking the question". Emotional experiences around the donation interview

Circumstances of high emotional intensity have been reported given the variability in the reactions of family members, against which the professionals develop adaptive, judgement-free, and often, improvised, styles of approaching them.

For me, it is always novel and each interview is an outpouring of emotions (Q/physician/56 years/UK/NR).

You open the door and you don't know what you will find, you don't know how you can introduce it, or how to ask it. There are those who will tell you how you have to do it (I/nurse/40 years, 1 year of experience).

…I understand any reaction from any family, I understand everything, I don't judge anything. I will treat you the same if you were King Felipe VI or someone from the district of Los Pajaritos (…), it doesn't have anything to do with your social, cultural, or economic status. That is what coordination taught me… (ex-coordinator/physician/50 year/10 years).

One strategy widely used, applied consciously and maturely among the people with more experience and nearly spontaneously among those with less experience, is to listen, giving the families time to express their emotions, request the needed information, and have all their questions answered. The focus on listening and active communication corresponds to one of the basic objectives of the donation interview, which is to accompany, help, and support families in grief, beyond the purpose of procuring organs.

I have reached the point of doing interviews almost without speaking… you only have to say that you are the transplant coordinator and listen to them and help them, and you will be surprised, when did I ask for the donation? I didn't ask for it, but they tell me yes (Ex-coordinator, physician/50 years/10 years).

Many times I have stayed silent and it was the family who directed me to what has to be done, many times… (I/physician/34 years/1.5 years).

Fig. 1 presents the reported emotional experiences, observing how the clearly differentiated moments of before, during, and after the interview imprint shared emotional experiences, but also different ones, depending on the years of experience and family response to the donation.

Fig. 1.

Emotional pathways in the professional donation interview experience.

(0.51MB).

Before the interview, feelings of apprehension, uncertainty, and nervousness are common, which results in doubts and concerns about the family response and possible unexpected events.

(I feel) a little bit of anxiety, including a feeling of uncertainty, apprehension about what will happen, what to say to the family, how they will reaction (…) Sorrow for the family, because of their loss, anticipation of getting close to them and the outcome, of trying to help the family and get the donation, not putting my foot in my mouth… (Q/physician/46 years/9 years).

I feel respect to see what I will encounter and lots of uncertainty; each interview is different and there is always something that you have not confronted and don't know how to resolve, uncertainty always 100 percent (I/physician/34 years/1.5 years).

There are times of tension, uncertainty, anxiety, worry, sometimes doubts. Waiting for the reactions of the families and how they will take our interventions makes me very nervous, sometimes somewhat afraid (Q/physician/56 years/6 years).

Those who have less experience report anxiety and worry related to fear of failure, while in those with long experience empathy with the families, sadness, and sorry for their loss predominate.

I'm afraid, afraid of not doing it well, making the family feel good, afraid, afraid (I/nurse/46 years/0.2 years).

Fear… fear of not knowing how to manage the situation, not having the right tools, of failing at something, expressing yourself poorly, not presenting the request in the right way (I/nurse/44 years/1 year).

I never stop "having butterflies in my stomach". (I feel) nervousness, sadness, empathy (Q/nurse/56 years/25 years).

With time I feel calmer, but many years have passed and it still ends up affecting me emotionally. (I feel) sadness, especially before the interview (Q/physician/59 years/22 years).

During the interview, all the health care personnel experiences situations of intense stress, tension, and concentration.

It is a feeling of alertness, open to all circumstances, operating at full power, peak capacity, with all five senses at 100%, a stressful situation… (I/nurse/40 years/1 year).

The stress is focused from different perspectives: recently hired individuals report sensations of fear and a mental block and high pressure to obtain agreement for the donation.

(When I started) to confront the family I was very afraid, I was very pressured to get a yes to the donation (…). I was very overwhelmed that they would say no, so I was very tense and very nervous and the situation overcame me, and I sometimes blanked when the family asked questions that I didn't know how to answer… (I/nurse/47 years/18 years).

My whole body trembled, I became nervous, very worried… (I/nurse/40 years/1 year).

Once they gain experience, the tension experienced during the interview is experienced as confidence and professional calm, with a central element being the usefulness of the interview, not just for obtaining organs, but also for accompanying the family and relieving the family's grief.

I feel good, since I approach the interview as an opportunity to help and accompany a family who is going through a very bad time (Q/physician/51 years/20 years).

In general, rather calm and tranquil, because I provide them with the opportunity to help other people and I help them to fulfil their desire to donate (Q/nurse/56 years/25 years).

Once the interview is over, there are two determining factors for the emotional experiences of the coordination personnel: first, the "yes" or "no" from the families and how this response is interpreted by the health care personnel; and second, the self-evaluation process that culminates with the sensation of professional success or failure.

Sensation of success or failure…, that is, evaluating your work, do you explain things clearly enough… whether it is a clear "no" or a "yes", but you evaluate it (I/nurse/44 years/1 year).

When they say "no" to the donation, it is considered a sign of a lack of solidarity and egotism, the health care professionals report feelings or anger and helplessness and intensely feel concern for the patients who are waiting for a transplant, as well as for the families themselves and their grief. Attributing responsibility to themselves is very high in this professional group, and often, the emotional outcome is frustration and a feeling of professional failure.

When you are inexperienced (…) you take the negative response as a loss (…) I felt angry (I/ex-coordinator/physician/50 years/10 years).

(I feel) helpless for not being able to help the families with an act which is only sustained by positive values (Q/physician/51 years/20 years).

Most (negative responses) are due to a lack of solidarity. When a family (…), which surely if their child needed a transplant (…), if they would receive it, but now they won't give? … that is egotism. (…) You know that a "no" means that people on the waiting list will die (…), so that weighs on us regarding possible negative responses. I suppose the term "professional failure" also weighs on you (…) partly you always think "I did it poorly and that's why they told me no"… sometimes partly because of the worry for those who are on the waiting list, partly because of worry that "I did it poorly", but especially, psychologically, "how does the family feel?" (I/physician/50 years/10 years).

On the other hand, when the professionals accept the donation rejection as a consequence of "bad grief", they experience this situation from a position of acceptance, respect, and understanding, and even though they feel sorry, they remain calm and tranquil. In addition, they make the experience a positive one based on the usefulness of the interview for accompanying and supporting the family, and they therefore experience a sensation of professional success.

Denying consent for donation will always exist and the people who refuse to donate are not bad (…) accepting them is the first step, respecting them is the best that a transplant coordinator can do and take into account that the family who refuses the donation does not have mechanisms to start a positive grieving process (I/ex-coordinator/physician/50 years/10 years).

I want them to be well informed about everything and all their fears resolved… Because of this I do not have negative feelings about the family members (I/nurse/47 years/18 years).

The emotions experience of a "yes" to donation also has different pathways, although they trigger a unanimous sensation of professional and personal success. Happiness and satisfaction for the positive interview outcome, hope for the possibility of saving other patients, as well as admiration and respect for the donor families predominate. However, the feeling of stress about organising the transplant process also reactivates.

The proactivity of that family in favour of donation had a larger emotional repercussion on me (…), the generosity of people moves me more emotionally than egotism (…), I'm worn out but I feel good (I/physician/50 years/10 years).

(I feel) hope that the patient's death will be the start of a new opportunity (Q/physician/51 years/20 years).

(I feel) happy knowing that these decisions help a lot and surprised by things that we sometimes do not expect in these situations. Then total tranquillity and calmness (Q/physician/56 years/6 years).

(I feel) satisfaction at the time they say "yes" (Q/physician/43 years/2.5 years).

After the interview, if it is positive, a feeling of stress starts because of all the calls that I have to start making (Q/physician/49 years/UK/NR).

Regarding expressing emotions or crying, different patterns by sex appear, with emotional closeness and emotional expression being more common among women, also understood as elements of professional and personal quality.

I learned to hug (…) and to cry with the donors and I don't feel like less of a doctor because of this, but like a much better doctor. Doctors have been seen as poor professionals for showing emotions or letting themselves cry (…), because of being men and because of being doctors (…) (ex-coordinator/physician/50 years/10 years).

On the other hand, some men emphasise the risk of expressing emotion for efficiency and obtaining objectives, although there are also opinions which emphasise the intensity of the emotions experienced, the difficulty managing such emotions, and the feeling of vulnerability and defencelessness they experience due to the lack of resources and support and the rigidity of the system.

Up to a certain point we are empathetic with the family, but also objective about what we do. Because at that point we cannot share the emotions at the family level, because then we would not be doing our job (…), we would end up not being efficient. A little like soldiers, right? (I/physician/38 years/3 years).

Letting our emotions out is making our vulnerability and fragility clear… And we are the ones who grit our teeth (…). And then, who will take care of us? (I/physician/50 years/10 years).

It is presumed that we are superheroes, that we have teeth made of steel and that we can chew through everything, that we are strong (…). Theoretically, we are 90%… but with what side effects? That doesn't matter… It is a very pragmatic and utilitarian viewpoint from the coordination structure… (I/nurse/62 years/27 years).

"Lots of wishful thinking, if not, it's impossible". Coping strategies and proposals for improvement

With emotional intensity, it is expressed the lack of formal resources and skills and personal and self-taught coping: 1. Individual and internal strategies: emotional neutralisation and negation, making the experiences positive. 2. Group strategies: emotional expression by sharing among equals and seeking family support, physical or leisure activities (Table 5).

The main needs, demands, and proposals for improvement reveal the importance of training for managing emotions and refer to training activities, directed group therapy, psychological support, and coaching (Table 5).