Shivum Kakkad and his family have joined an NHS campaign urging families to talk about organ donation following research that less than half of adults in England have had the conversation.
Shivum’s father, Bharat, fell ill suddenly one morning in May 2019 at the family home in Pinner, Middlesex. He sadly never regained consciousness and died a few days later in hospital. He had suffered a cardiac arrest causing hundreds of tiny strokes. He was 63. The family had never spoken about organ donation.
The family’s moving story is part of a new campaign, including family footage and memories of Bharat, ending with another memory – when they asked Shivum if his father wanted to be an organ donor and he just didn’t know.
However, Shivum and his family did agree to organ donation, but it was a decision that could have been made easier if they’d had the conversation.
The “Leave Them Certain” campaign, which aims to highlight the impact not knowing has on the families who are left behind and encourage people to talk about their decision. It follows the law change last year in England, which means that all adults are seen as willing to donate their organs, unless they opt out or are in one of the excluded groups. However, many don’t realise that families will still be approached before any donation goes ahead.
Shivum said: “My father was a very giving person. He did charity work and was a strong believer in the Hindu act of sewa, or service to God. When the specialist nurse approached us about organ donation, we made our decision. We knew that helping others in need was what my father would have wanted.
“But I wish we had spoken about it to know for certain and I would urge others to take the opportunity while they still can.”
Shivum hopes that by sharing their family’s story, they will encourage more families, particularly from Indian and other ethnic backgrounds, to support and talk about organ donation. Bharat went on to help the lives of two other people. He donated a kidney to a woman in her 50s and a kidney to a man in his 60s.
Shivum added: “My father was a vegetarian, he went to the gym, and was a non-smoker and didn’t drink. There was no logic to his death.
“But we knew he would not have wanted his organs to go to waste, and as a family we take comfort from knowing he helped others.”
According to official data, even though 80 per cent of people are willing to donate their organs, only 39 per cent say they have shared their decision. And while a huge nine in 10 families support organ donation if they knew what their loved one wanted, this figure falls to around half (51 per cent) when a decision is not known.
Record numbers of people from minority ethnic backgrounds received lifesaving organs last year, however they still have to wait longer than white patients for a transplant. Although people can receive a transplant from someone of any ethnicity, the best match will often come from a donor of the same ethnicity.
Altaf Kazi, Head of Faith Engagement for NHS Blood and Transplant, said: “The choice about whether to become an organ donor will always be a personal decision and donating in line with faith and values is very important to many people. We want everyone to understand the law around organ donation, the choices available to them, and highlight the importance of sharing their decision. This is so families can be certain they knew what their loved one wanted.
“When it comes to organ donation, faith and beliefs are always respected. If you register a decision on the NHS Organ Donor Register, there is an opportunity to provide details so you can ensure your wishes are respected and discussed with your family. Whatever your decision, we want people to talk about it. We see first-hand the impact not knowing has on families when the first time they consider their loved ones wishes around organ donation is when they are seriously ill or have already died. Please don’t wait. Have the conversation today.”
Research shows that the biggest barrier to talking about organ donation is that it’s never come up in conversation, with 34 per cent of people stating this as their reason; 27 per cent say they are worried it will upset their family or make them feel uncomfortable; 24 per cent feel they don’t need to tell anyone their decision; 22 per cent don’t want to talk about their own death; 22 per cent say they haven’t got round to it yet; and 16 per cent have never thought about organ donation before.
The National Health Service (NHS) has produced some tips and guidance with these findings in mind:
Start by checking in first; ‘how are you doing?’ so you can gauge whether now is a good time. Choose a time when you’re not too distracted or when you’re sharing a space, or time with each other, maybe over a cup of tea or out walking.
Perhaps there is something that prompts the conversation – passing a driving test, seeing our campaign TV advert, or an article in the paper.
Open with ‘did you hear’ and not your own point of view; or use a hypothetical ‘how would you feel if…’
If faith is important to you, open with talking about what you know about your faith’s beliefs on giving.
Acknowledge it’s a difficult subject and that you don’t have to agree.
*NHS info: Organ Donation Awareness