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Original Article

Coping with relatives during end-of-life decisions

Baldinazzo, S.a

Author Information
European Journal of Anaesthesiology: February 2008 - Volume 25 - Issue - p 164-166
doi: 10.1017/S0265021507003195
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Abstract

Introduction

Nurses, thanks to a series of legislative changes as well as specific professional training, have become independent, high-level professionals over the last few decades in Italy.

What is more, working within such a complex context, it is only through close collaboration and synergy between medical and nursing staff that quality can be improved, and services and results properly delivered.

An inter-disciplinary approach means that any issue is tackled from diverse points of view and these need to be integrated. It also means recognizing that each viewpoint is partial yet indispensable to the overall understanding of a complex situation like that of a relative who has to make a decision about a family member who is dying.

The Coordination nurse, in particular, when dealing with organ and tissue donation and removal, is faced with complex situations on a daily basis, sometimes together with the doctor, other times alone. These situations are unusual and complex from both a technical and interpersonal point of view.

At the moment when seriousness of the clinical situation and later the death of a loved one has to be communicated to the family, and when the families are given the opportunity to decide whether or not to donate their loved one's organs or tissue, it is the Coordination nurse, along with the doctor, who stays with the relatives to try and help them understand and be in a position to make the right choice for their individual family.

In the complex process of organ and/or tissue donation, dealing with the emotional and psychological problems means coping with intense and sometimes contradictory feelings like despair at the loss of a loved one, loneliness, grief, anguish, anger and generosity.

The interview with the family is one of the most delicate links in the donation chain, which is why we place so much importance on it.

Italian nursing standards recognize that communication and interpersonal skills are fundamental to the job and state that a nurse should make sure that people involved in the donation process get information and support. (D.M.739 del 1994 ‘Regolamento concernente l'individuazione della figura e del relativo profilo infermieristico' (Regulations regarding the role and duties of a nurse). Codice deontologico 12 May 1999, art. 4 comma 16-18).

Nurses have always acted as a bridge between the hospital staff and the families, dealing as they do on a daily basis with the questions and criticisms raised by users and their relatives.

Experience has shown that the family perceive the Coordination nurse as the person who is closest to them and their needs. The contact that has been established over the preceding days opens communication channels and creates a rapport between health workers and the family, which enables them to proceed during the difficult moment of the interview when their loved one is dying.

What we do in practice

A case study (now or later?)

The relatives of patients admitted to intensive care usually find themselves unexpectedly plunged into a dramatic situation. They often cannot believe what is happening to them, especially if the hospitalization is a sudden emergency, as is often the case with cerebral lesions. The atmosphere in intensive care strikes them as cold and hostile in their psychologically weakened state. Not only do they see their loved one linked up to a monitor, but they are also told how serious the situation is and have to accept that it is impossible to establish any kind of rapport with the patient. This is all extremely frustrating and complex. Isolating the patient, although very justifiable from a medical and nursing point of view, makes the family members feel anxious and afraid, useless and excluded.

Since we believe that communication is the most essential part of hospital admission, we plan our talks with the family carefully, trying to offer some emotional support and promote an atmosphere of trust and understanding. Our objective, in fact, is to try and nurse people who are dealing with a serious situation or grieving for a loved one through their pain so they can later make a decision.

We try to create an alliance with the family and this requires active listening.

We give families information in clear and transparent terms.

It is fundamental that the death of the patient is communicated by the doctor in charge of the case, and that this is done before the question of donation is raised. This must also be done at a later date to enable the family to start to come to terms emotionally with their loss. Crying and other signs of grief must be accepted as legitimate and necessary and also as important indicators that the family have really taken in the news of the patient's death. The idea of donation is suggested when we believe the family has understood that their loved one is dead.

Bearing firmly in mind who we are talking to (old people, adults, children), we try to adapt our communication style, both verbal and non-verbal, to the background, language and religion of the people we have established a rapport with, respecting the individual needs of each family.

When people are feeling insecure or particularly emotional, the inter-disciplinary approach (delegating the job to another health worker, i.e. the doctor who deals with this aspect) allows for the relationship with the family to be maintained at all levels, something which proves very difficult if the staff have to work alone.

Through our communication we try to find a way to establish contact with the relatives both before and after the donation and we also try to guarantee that there will be some kind of ‘restitution' after the donation when this actually happens.

We invite people to talk to us and we pay careful attention to facts as well as feelings, so that they feel listened to, accepted and understood.

We try to clarify emotional problems by summarizing facts and feelings.

We try to use empathy, active listening, physical contact and calm and we are careful about the way we express ourselves during the conversation.

The exchange proceeds with open questions about what happened (reconstructing the past) and about current problems (the present).

We listen carefully to expressions and thoughts relating to death. We bring the open questions round to immediate and short-term needs (the future).

We try to look for possible solutions to the requests that are made, taking into consideration and verbalizing what has already been done.

Our help focuses on enabling people to make a conscious decision.

If the person is able to, they are invited to act. If the person is not able to, we talk about donation in a fairly assertive fashion but delay the moment when a decision has to be made, making it easier to keep the appointment by fixing the time and place.

Experience has shown us that situations like these are emotionally complex and tiring for family members and health workers alike. Sometimes stress levels amongst health workers after the interview with the family are so high that psychological support is needed.

We find ourselves in the position of having to ask the wrong person an awkward question at the most difficult moment in anyone's life. Emotions get in the way of understanding the real facts and information. People feel so lost and alone that their ability to take into consideration all the different aspects at play is compromised. Grief, in fact, makes us unable to see reason.

When we leave the family, whether they have decided to donate or whether they have chosen not to give their consent, we always try to show gratitude for agreeing to the interview and listening to the proposal.

If they decided to donate, the restitution phase is very important. A meeting is arranged for about a month after the event, thus giving the time and opportunity to inform them of the success of the donation, leaving a telephone number for further questions or meetings.

A work group comprising personnel from Foundation Bank Eyes Venice (FBOV) and nurses from local Coordination groups carried out research into the Experience of families in cornea donation to try and analyse the experience of donation from the point of view of the families involved (identifying their needs during the donation process). They wanted to try and identify what kind of communicative and interpersonal needs the families had, and to analyse the family's experience and the rapport established with the hospital, Coordination groups and FBOV.

Out of 100 families who requested to know about the success of their donation in 2003, 80 were contacted, and anonymous questionnaires were sent out (with an accompanying letter explaining the research). Fifty-eight were returned with a 77% response rate.

The results showed that for the majority of the people questioned, the quality of service they received was high during the information phase and that the level of professionalism and humanity shown by the Coordination personnel during the donation process was excellent.

The training received by workers in this sector needs to be twofold. It needs to provide staff with the technical know-how on to deal with the interviews in a professional and competent manner and also needs to provide them with the means to arm themselves with defence mechanisms in order to avoid the risk of burn-out, which is a frequent problem in this sector.

Keywords:

ORGAN DONATION; CRITICAL CARE; PROFESSIONAL-FAMILY RELATIONS; NURSES

© 2008 European Society of Anaesthesiology