“Organ donation is one of the most beautiful things that people can do”: Meet Frank Dor
Kidney disease is the eighth leading cause of death and if left unaddressed, it is estimated to be the fifth leading cause of years of life lost by 2040.* End stage kidney disease requires kidney transplantation or long-term dialysis.
Frank Dor is a consultant transplant surgeon, clinical lead for transplantation and the chair of the Trust’s Clinical Ethics Committee. Here, Frank discusses organ donation more widely and specifically the benefits of living kidney donation.
What inspired you to pursue this particular career path?
As a medical student I was fascinated by immunology (how our bodies respond to intruders), but my overall desire was to be a surgeon. Transplantation allowed me to combine my love of immunology and surgery as a transplanted organ is basically an intruder, and I was intrigued by how other peoples’ organs and cells can live and function in another host.
I love that no two days are the same; from operating to being in clinic, on call or in meetings, there is never a dull moment. I am particularly passionate about driving change through research, policy and advocacy within this field.
What are your areas of expertise within surgery?
My expertise is in transplant surgery of the kidneys and pancreas – for years I also performed liver transplantation in The Netherlands, where I worked before I moved to Imperial in 2016) – but within this field, my passion is living kidney donation where a kidney is removed from a live donor and transplanted into a recipient.
People often think that individuals might be too young or too old or have too complex an anatomy to donate a kidney. However, my research is trying to find evidence to the contrary so that we can push for more living donations. I am also an advocate for offering patients with end stage kidney disease a transplant before they need dialysis. The default is dialysis first and then maybe a transplant, however, if patients have a living donor, in most cases, dialysis can be avoided and the results of such “pre-emptive” transplants are significantly better.
Patients often find it difficult to start discussions about living kidney donation because they feel like they are potentially harming a loved one or they might have cultural or religious reservations, or a general mistrust in the healthcare system. We must work harder to raise awareness of living kidney donation so that they feel empowered to choose this option.
Why are organ donations important?
Organ donation is one of the most beautiful things that people can do. It can transform and extend a person’s life completely.
Dialysis patients have a much higher chance of dying than many types of cancer patients these days. The quality of life of dialysis patients is also significantly reduced – people become incapable of doing regular things such as going to work. From the outside, people do not see the struggles of kidney patients because in the early stages, there may be no obvious symptoms of kidney disease and if patients go on dialysis, most people assume that these patients are fine as they are still living. However, many dialysis patients have likened their experience to a form of imprisonment as they must have treatment several times a day/night and they never feel as ‘normal’ as someone without kidney disease.
Successful organ donation therefore transforms chronically ill people with a high risk of dying and a poor quality of life, into “healthy” people. They will still need treatment and lifelong medication, but they can return to an almost normal life which is what we aspire to.
Even though loss is always difficult, families and loved ones of donors often gain comfort knowing that a donor has saved the lives of up to seven to eight people. And of course, many living donors can witness first-hand the impact of their donation.
Are there any disparities in organ donations?
Organ donation doesn’t discriminate. There is no matching based on race, ethnicity, religious beliefs or sexual orientation. However, certain ethnic populations in the UK have more difficult access to transplantation and are waiting longer. This is because certain ethnic populations have specific blood groups and tissue types which need to be matched with a potential donor. This is why it is important that people from all ethnic populations opt in to be donors. Individuals from lower socioeconomic backgrounds are also more likely to develop kidney disease compared to people from higher socioeconomic backgrounds, and there are less transplant options available to them due to a lack of knowledge about transplantation and living donation in particular, less social support, and less patient activation.
I am proud that as a Trust we have a peer buddy phone support scheme for black patients so they can discuss living donation with someone who has either donated or received a kidney. This means that individuals can speak the same cultural language and more freely compared to a patient and a healthcare professional. Community based interventions such as this are very important to increase living donation in various communities.
What kind of safeguarding and ethical procedures are in place for organ donations?
There are lots of myths around organ donation. Deceased donation is when organs are donated once someone has passed away. Individuals often fear that if you are a registered donor, no one will try to save your life or healthcare professionals will stop trying earlier compared to people who are not registered donors. This is not true. It is such a safeguarded process; the diagnosis of brain death and the ruling out of further treatment is always a decision made by multiple health care professionals. The other category of donation is after circulatory death which is when treatment is ruled out for patients who are not brain dead, but for whom no therapeutic options are available, and life-support will be withdrawn. For example, a patient who had a cardiac arrest which resulted in severe brain damage and for whom there was no hope of recovery. Again, these decisions are not taken lightly and involve a multidisciplinary team.
I am involved in many national and international groups to produce best practice guidelines and recommendations based on evidence-based research. I can assure patients that organ donation is one of the most ethical procedures imaginable and supported by all world religions. Data is collected from every step of the process, and we are constantly looking to evolve and improve the process and long-term outcomes of transplantation.
What have been some of your career highlights?
I regularly hear from transplant patients long after they had their transplant. One patient story that stands out is an individual who had had many failed transplants before coming to us. We were able to perform a successful transplant and the individual has gone on to build a career, get married and start a family. This makes all the difficult moments worth it.
One of the most rewarding things has been receiving recognition for the things that I have worked hard for – both from my peers and patients. Some years ago, I got an award for my research achievements in transplantation from the Dutch transplant society. I am still very proud of this. I have also obtained many national and international roles. I am an executive council member for the European Society for Organ Transplantation, and I have been Treasurer since last year. I was also elected president for equality, diversity and inclusivity for the European Union of Medical Specialists (UEMS), the organisation representing 1.6 million medical specialists in Europe. Most recently, I was appointed an ambassador of Kidney Care UK, the largest kidney charity in the UK. I am honoured and humbled to endorse this charity.
