FAMILY APPROCH TO ORGAN DONATION

Agne VaitkevicieneFallatah Abdulelah

Family interview is an evidence-based

scientific, systematic process which

allows us to approach the families face to

face at the worst moment, but the only

moment we have.

CONTENT

● Preparation and planing● Communication skills● Family interview● Arguments for requesting donation● Strategies of facing family refusal● Social-medical history

Preparation and planing

● Collect information from patient's medical documents, doctors, nurses. Also information about the family.

● Prepare premises where family interview will be held insuring privacy, comfort and have everything family might need (water, phone, tissues).

● Plan the intruduction speech and how will you come forward with donation.

● Prepare for family response to band news, grief, donation.

● Collaborate with the medical team responsible for the potential donor.

Communication skills - VERBAL

Narrative or summarizing techniques: allow focus on subjects, avoid digression by the family and go over the whole story from the time of admission to hospital.

Metaphors: allow comprehension of BD as complete and irreversible.

Simple language in order for easier understanding

Open questions

Communication SKILLS - Non-verbal

Silence: respect silences. Pauses of 4 or 5 seconds shows respect, express interest and attention to what the family has to say.

Eye contact.

Physical position: we have to adopt a position of proximity, in a circle and without barriers.

Physical contact: used for consoling, showing warmth and tenderness.

Paying heed, listening and use of gestures: the family needs time to assimilate the news.

A warm and low tone of voice denotes respect and affection.

Family interview

● Objectives of family interview:

– To know the deseaced will;

– To evaluate behavioural donor risk factors;

– To help family deal with stress, difficulties in undertanding brain death, fears about donation.

● Plan of family interview:

– Ask before you tell

– Give information (make sure they understand the situation, BD diagnosis)

– Address their emotions (give time to greif)

– Offer the posibility of donation

Donation request

● Ask about known wishes of the deseaced about donation

● Arguments for requesting:

– Solidarity (“we are all involved”)

– Usfullness (“it will save someone else life”)

– Generosity, praise, reciprocity (positive arguments to elevate the image of the deceased)

– Facilitation (explanation of formalities in simple and detail)

Main causes of family refusal to organ donation

1. Presumed refusal in life

2. Not knowing the deceased beliefs/wishes about donation

3. Not understanding brain death

4. Dissatisfaction with the health care

5. Family refusal with no reason

6. Fear of disfigurement and integrity of the body

7. Religious objections

8. Disagreement among family members

9. Assertive refusal

10. Unknown organ destination

M. Morais et al, "Families who previously refused organ donation would agree to donate in a new situation: A corss-sectional study" Transplantation Proceedings, Vol 44, Issue 8, 2012, p. 2268-2271

F. Ghorbani et al, "Causes of familu refusal for organ donation", Transplantation Proceedings, 2011 Vol 43, Issue 2, p. 405-406

PRESUMED REFUSAL IN LIFE

Strategy:

- Make sure that this belief was reasonable and reliable, how he/she felt (“Could you tell me a little bit about that time he/she told you he/she doesn’t want to donate?”)

- Accept deceased’s right to refuse donation (“Thank you for considering the donation – your descision will be respected”)

NOT KNOWING THE DECEASED BELIEFS/WISHES ABOUT DONATION

Strategy:

- Insist on fact that the deceased never expressed his/her refusal and look at positive reasons

- Provide arguments of generosity, reciprocity, solidarity

(“If he/she has not made his wishes known to you, it is your decision as his/her family to decide whether this is something he/she would have wanted – to help others after death”)

Not understanding brain death

Strategy:

- Ask questions to find out exactly their understanding about their relative

- Use metaphors to explain BD concept, explain the differences between BD and coma

- Use clear, easy language without medical terms

-  offer the option of viewing the brain death tests

- Give time to adjust to the information

DISSATISFACTION WITH THE HEALTH CARE

Strategy:

- Accept complains from the family, avoid trying to justify what has been done

- Separate the two issues – their concerns are not related to donation

- Help to understand that donation will not interfere with further claim, legal action

Family refusal with no reason

Strategy:

- Try to find out who is pro-donation and separate who is are against the donation

- Reinforce, repeat any positive statements that are made

- Address to their concerns and support those whoa re against the donation

- Use arguments of solidarity

FEAR OF DISFIGUREMENT AND INTEGRITY OF THE BODY/FEAR OF PAIN

Strategy:

- Take time and explain the retrieval process and our responsibility for restoration of the image of the body, compare to the surgical procedure

- Guarantee a punctual hand over of the body to the family for burial

- Explain that because your relative has died, he/she cannot feel pain (“some families that I speak with often feel this way and I am aware that this has been a very difficult time for you and your family”)

Family answer: NO

Strategy:

- Let them know that it is alright to say “No”

- Thank for their time and agreeing to speak about donation

- Again, express you condolences

Family answer: YES

Strategy:

- Communicate the support, show your gratitude for agreeing to donation

- Inform about what will happen next, answer their questions

- Let them know that you will need to ask them some questions about social-medical history of the donor.

Social-medical history

● Find out as much as possible about donor's social and medical history (after approval)

● Indicate if there are any biological risk factors for infectious disease.

● Offer them to read it by themselves● Offer them to inform if any unexpected result is found

Key questions:● Ruling out the window period of infectious diseases (HIV, HBV,

HCV)● Ruling our transmissible disease (Creutzfeltd-Jacobs disease)

Conclusions

● Family approch in organ donation should be done by professionals with trained communicational skills and practice

● Family interview is a process that requires preparation and planning

● Good family interview by an expert is one of the most important factors for condition concent

● TC should have knowledge how to present donation and how to handle refusals

● Eliminating biological risk factors improves donation process

Case study

● During Family interview about organ donation family was very confused about the whole process. They still think that their relative is still alive, breathing, his skin is warm, his heart is beating. They think he is in coma and there is a chance he will wake up.

● QUESTIONS to answer:

1. What strategy would you use for facing this refusal?

2. What would you say to the family?

3. Would you ask someone from the unit to help you? Who?

“52% of the families who refused donation

would agree to donate in a new situation”

M. Morais et al, "Families who previously refused organ donation would agree to donate in a new situation: A corss-sectional study" Transplantation Proceedings, Vol 44, Issue 8, 2012, p. 2268-2271