Why loved ones need to know how you feel

Bracing for tragedy is no way to live – but that doesn’t mean there aren’t practical ways to prepare for the unthinkable. Loved ones are impacted later if we keep our wishes unknown, so how do we approach family conversations now that some members might prefer to avoid?Taking a leaf from professional practice is a good start. Organ donation specialist nurses have unthinkable conversations all the time – and formal training enables them and their medical colleagues to impart critical information while confirming a family’s worst fears. Such specialists are trained to talk to shell-shocked, distraught families, but the basic tools for managing such horrible situations are available to us all.Organ and Tissue Authority national training co-ordinator Bernie Dwyer says it boils down to compassion and communication.“It’s really working on teaching a whole lot of communication techniques about exploring families’ concerns, being comfortable to sit in the families’ sadness, allowing silence, allowing families time to think and ask questions,” she says. “We know that if families have talked about it beforehand, if they’ve heard what their loved ones wanted, then certainly more families are likely to support their loved one’s wish.” Royal Melbourne Hospital donation specialist nursing co-ordinator (DSNC) Michael Jay says the “enormity and complexity of the conversation” requires comprehensive communication skills.“In particular assessing bereavement and loss …(and recognising) when families are in a state of shock … because there is evidence to suggest that it does need to be discussed at a time where families are ready to hear it and ready to have that discussion,” Jay says.“Families (are) always very willing and comfortable to talk about their loved one, and so I would normally redirect the conversation back to their loved one and just spend some time talking about the type of person that they were.”Both Dwyer and Jay repeatedly stress just how unburdened families are by knowing in advance what their loved one wanted, either because they registered as an organ donor or expressed their wishes. Should tragedy strike, such knowledge spares families from having to make multiple uninformed decisions during one of the worst moments of their lives.“While it can still be very difficult, open and respectful dialogue well ahead of time is preferable to a frantic discussion driven by stress, fear and grief in palliative care or an emergency room,” says Australian Psychological Society president Tamara Cavenett.“The best time to talk is somewhere safe and comfortable for everyone.”It’s worth knowing that the chance of dying in a way that makes organ donation possible is the rare exception rather than the rule. It’s a tough numbers game, which is why DonateLife is urging the 13 million Australians aged 16 and over who are eligible to register as an organ donor, but haven’t, to take the single minute needed to sign up. Police Sergeant John Lowe lost his psychologist wife Louise to an aneurysm in 2014, when Louise’s two sons from a previous marriage, James and Alexander, were 17 and 11. The couple were registered organ donors and knew what the other “was willing to give up”.“For Louise, she said everything but her eyes,” Lowe says. “She just felt her eyes were part of the soul.”Knowing Louise “did not want to lose any opportunity to help somebody if she could” made “all the difference” to her family, he says.Louise ultimately saved six lives.“None of those decisions were mine – they were Louise’s decisions,” Lowe says.“It was the last thing that she could do on this planet. All I was doing was being her voice when she couldn’t have that voice herself.”HOW TO TALK ABOUT IT Open communication helps families learn each other’s wishes when life is good – here are some suggested techniques.1. Listen to your loved ones. Paying attention to someone’s wishes while they are fit and well provides profound comfort and guidance should the unimaginable happen.2. Ask family members where they stand rather than leading with your own position. People often share more or become more receptive when they are asked what they think first.3. Embrace available support services. If people who have these conversations for a living need regular counselling and psychologist support, surely grieving families do too.4. Accept that others feel differently, both generally and in grief. Pressure in either direction is unlikely to yield the desired outcome but will almost certainly cause others pain.5. Make space for yourself and others to say “no”. For some families or family members, “no” means certain organs won’t be donated; others will decline donation as a whole. IT ONLY TAKES ONE MINUTE AND THREE STEPS TO REGISTER, OR CHECK IF YOU’RE REGISTERED:1. Scan this QR code to visit donatelife.gov.au2. Have your Medicare card handy3. Put your name, DOB, postcode and Medicare details into a simple form and submitOriginally published as DonateLife Week: If tragedy strikes, knowing a loved one’s wishes is a precious gift