Organ Donation: Law, personal reflections & a challenge to you

I mentioned Organ Donation in my previous blog and am aware that this important subject deserves a more detailed discussion. This blog will highlight current law, share my professional experience of Organ Donation and, I hope, encourage people to engage in talking about Organ Donation personally and professionally,.

 

What is the law around Organ Donation?

The law around Organ Donation changed on 20 May 2020 when the Organ Donation (Deemed Consent) Bill receives Royal Assent on 15 March 20219. Under current law, all adults in England are considered, unless they have recorded wishes to the contrary, to have agreed to be an organ donor – this is known as an opt out system.

The law is also referred to as Max and Keira's Law

Organ Donation Act will mean adults in England will be considered potential donors unless they chose to opt out or are excluded. The act is known as Max and Keira’s law in honour of a boy who received a heart transplant and the girl who donated it.
— https://www.gov.uk/government/news/opt-out-organ-donation-max-and-keira-s-bill-passed-into-law

You can find out the answers to many common questions about Organ Donation on the NHS Organ Donation website.

Organ Donation: Practice reflections

I’m writing this blog and glancing occasionally at a folder to my right – it is something very precious to me. The folder contains around thirty years of feedback as a nurse, cards, letters from families as well as letters following corneal and heart valve retrieval, mainly from my early career in hospices. Following a retrieval, we would be sent non-identifiable information of the person who received the donation; knowing people had received the gift of sight was amazing and I know of comfort too to the families who generously agreed to organ donation.

I remember the first time I had a conversation with a family about organ donation and how nervous I was, I remember too the countless generous families that consented. I was lucky to have great role models to work alongside and seeing their approach to compassionate communication helped me so much. Did every family consent? The answer to that is no, not every family consented to organ donation, but no one objected to the question being asked. Of course, how much better it is if these discussions are had earlier I remember too finding an Organ Donation card following the death of a patient and realising it was too late. Packing away belongings of a deceased patient and finding out an opportunity for donation had been lost as well as an opportunity to fulfil that patient’s wishes was heart-breaking. Again, it came down to communication – no one had asked on admission what the patient’s wishes were regarding donation.

Very importantly, I remember the respect shown by retrieval team to the deceased patient and family when they visited the hospice to retrieve corneas. I would recommend, as part of anyone’s professional development, to spend time with and Organ Donation team.

 It used to be common practice to ask patients and families about organ donation, but I have observed that having these conversations became less common. More recently, I have worked in areas that do not have a policy about organ donation, and as less healthcare professionals asked the question and acted as role models to newer colleagues, the practice seemed to become less common. I appreciate this is a personal reflection and would be interested to hear the views of others and would love to be contradicted and told that where you work you have guidance, support and that this is embedded in your practice.

More recently, I was incredibly privileged to record the podcast Organ Donation: hope and transition after an unexpected death with Vicki Caldwell, mother of organ donor Fi in which I talked with Vicki about a lived experience of Organ Donation. We speak about Max and Kiera’s Law, the importance of having conversations and the impact of making a decision to donate.

Talking about Organ Donation

We all have a responsibility to think about Organ Donation and share with people close to us what our wishes are. You can register to donate, opt out, amend or withdraw a decision through the national website, whatever you decide, tell the people close to you.

Talking is important because there are still opportunities for organ donation missed because families are just not sure what to do.

Access resource to help talk about organ donation with loved ones here

https://www.organdonation.nhs.uk/talk-to-your-loved-ones/how-to-talk-about-organ-donation/

If you are in healthcare, take a moment to check you have a policy about Organ Donation at your place of work. I am pretty sure there will be somewhere to document Organ Donation preferences on a patient’s admission notes – how often is this done? Do you know what to do and who to call if a patient wishes to donate? Do you have any audits on how often the question of Organ Donation is asked?

Communication is key, are you confident in starting a conversation? Some helpful phrases to start conversation include:

·         “Mrs Jones, can you tell me what sort if a person your husband was”

·         “How do you think Mike would feel about Organ Donation?”

·         “There are many decisions to make over the next few days you will need to make for Jane, one thing that we will need to talk about is a decision about organ donation”

I mentioned earlier, seeing someone else holding the conversation sensitively and compassionately is a wonderful learning experience. If no one in your area of work has experience, think about where you could visit as part of on-going learning and development.

Knowing facts helps build confidence too, and for all up to date information about Organ Donation check out the website NHS Organ Donation

 

Closing thoughts

This has been a reflective blog to write, and a moment to pause and remember past patients and families. I hope the blog challenges you to reflect on your practice, either to celebrate including organ donation discussions or as a gentle nudge to work towards having these important conversations. Maybe, after reading this, you will become a role model for the future, the person others will watch and learn from.

 

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