2013 Organ Donation Strategy & Beyond

Untitled

“In January 2008 the Organ Donor Taskforce (ODTF) published its report setting out 14 recommendations which, if implemented in full, should enable the UK to increase the number of deceased organ donors by 50% from a baseline of 809 donors. All four national governments endorsed the recommendations, participated in the ODTF Programme Delivery Board and provided resources to enable the recommendations to be implemented. Nearly four years later the recommendations have largely been implemented. Deceased donor numbers are up by 34% and we recognise that this increase is predominantly made up of an increase in DCD donors and that donors in general are becoming older and heavier. There is still a significant gap between the need and availability of organs for transplant.”

So the 2013 Strategy discussion paper begins. A remarkable 5 years, but a long way to go.
Even the 50% will be a close thing. At week 20, 19th August, the UK is heading toward 44% only, and thus will fall short of the ‘magical 50% goal’. 50% was chosen as this is what Spain achieved when they first started to increase their donation numbers.
The 2013 strategy would like to set out to achieve another 50% over the coming 5 years. If successful this would put the UK into the upper tier of world donation figures.

Yet the majority of the UK donation success has been achieved though Donation after Circulatory diagnosed Death (DCD), 45% of all deceased donation, not Donation after neurologically (brain) diagnosed death (DBD), where organ quality for transplant outcome is generally superior. Has the rise of DCD been one of robbing Peter to pay Paul, as some transplant surgeons insist, or instead one of giving a potential to donate when previously there was none, as many in intensive care believe?

I’ll save that for another post, but it is probably worth reflecting on the Taskforce’s 14 recommendations.

Organ Donor Taskforce 2008,
14 Recommendations
(and my report card)

Recommendation 1
A UK-wide Organ Donation Organisation should be established.
- done

Recommendation 2
The establishment of the Organ Donation Organisation should be the responsibility of NHSBT.
- done

Recommendation 3
Urgent attention is required to resolve outstanding legal, ethical and professional issues in order to ensure that all clinicians are supported and are able to work within a clear and unambiguous framework of good practice. Additionally, an independent UK-wide Donation Ethics Group should be established.
- done (though will never be finished, but substantial progress has been made, especially in Donation after Circulatory Death). I hold the work in this area as one of the key reasons for the UK progress.

Recommendation 4
All parts of the NHS must embrace organ donation as a usual, not an unusual event. Local policies, constructed around national guidelines, should be put in place. Discussions about donation should be part of all end-of-life care when appropriate. Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this.
- done (the infrastructure is now in place, it just needs to be actioned each and every time). With Recommendation 3 and 9, this is a key reason for the UK progress. The local donation team (Chair, clinical lead and specialist nurse) is the powerhouse behind UK organ donation progress.

Recommendation 5
Minimum notification criteria for potential organ donors should be introduced on a UK-wide basis. These criteria should be reviewed after 12 months in the light of evidence of their effect, and the comparative impact of more detailed criteria should also be assessed.
- done with the NICE guidance.

Recommendation 6
Donation activity in all Trusts should be monitored. Rates of potential donor identification, referral, approach to the family and consent to donation should be reported. The Trust donation committee should report to the Trust Board through the clinical governance process and the medical director, and the reports should be part of the assessment of Trusts through the relevant healthcare regulator. Benchmark data from other Trusts should be made available for comparison.
- done, though decifering funnel plots takes some time.

Recommendation 7
BSD testing should be carried out in all patients where BSD is a likely diagnosis, even if organ donation is an unlikely outcome.
- good progress (though will always need ongoing work)

Recommendation 8
Financial disincentives to Trusts facilitating donation should be removed through the development and introduction of appropriate reimbursement.
- done

Recommendation 9
The current network of DTCs should be expanded and strengthened through central employment by a UK-wide Organ Donation Organisation. Additional co-ordinators, embedded within critical care areas, should be employed to ensure a comprehensive, highly skilled, specialised and robust service. There should be a close and defined collaboration between DTCs, clinical staff and Trust donation champions. Electronic on-line donor registration and organ offering systems should be developed.
- done and embedding specialist nurses into hospitals a key achievement - keeping them there is the next pressure.

Recommendation 10
A UK-wide network of dedicated organ retrieval teams should be established to ensure timely, high-quality organ removal from all heartbeating and nonheartbeating donors. The Organ Donation Organisation should be responsible for commissioning the retrieval teams and for audit and performance management.
- This roles into transplantation. Some infrastructure changes have been made and are welcome, but the job is not done, especially when compared to the progress in other areas.

Recommendation 11
All clinical staff likely to be involved in the treatment of potential organ donors should receive mandatory training in the principles of donation. There should also be regular update training.
- barely started

Recommendation 12
Appropriate ways should be identified of personally and publicly recognising individual organ donors, where desired. These approaches may include national memorials, local initiatives and personal follow-up to donor families.
- not done

Recommendation 13
There is an urgent requirement to identify and implement the most effective methods through which organ donation and the ‘gift of life’ can be promoted to the general public, and specifically to the BME population. Research should be commissioned through Department of Health research and development funding.
- not done

Recommendation 14
The Department of Health and the Ministry of Justice should develop formal guidelines for coroners concerning organ donation.
- some progress only



So all up, considerable progress, but much more yet to do, and a distinct tailing off of success, as the recommendations go from 1 to 14.

Short Notes I prepared for the Big Questions on BBC 1 in February 2012

Short Notes I prepared, for my own use, in the lead up to my appearance on the Big Questions on BBC 1 in February 2012.

Click
HERE to read the post.

Should organ harvesting be easier? [The title of the Big Question]
Firstly anyone who has ever been involved in donation, and met a donor family, would never use the word harvest. It implies the dead are objects of consumption rather than individuals who are probably offering the greatest gift one person can give to another, in peacetime. We would never use such disrespectful terms about a soldier who died. 


Firstly deceased organ donation is never easy, it occurs at a moment of tragedy and requires the death of someone. If easy means improving the support and care we can give to the donor and their family, then yes we must make it easier. If easier means, society claiming a right to the organs and ignoring the needs and dignity of the dying, then no it should not be easier.


How do doctors diagnose death / are they really dead?
Doctors confirm death in three different ways depending on the circumstances they are called upon to make the diagnosis.

In forensics or at the scene of an accident - one can often see quite clearly, just by looking at the body, that death has occurred

In the home or in the hospital doctors will listen to the heart and look for signs of breathing to confirm that death has occurred.

Each year there are a small number of intensive care patients who have sustained such a terrible brain injury that in any other circumstance would have resulted in their heart stopping, but because they are being treated with breathing machines and other technologies, their heart is still beating. In this rare circumstance, and we are talking about 1600 patients per year, two senior intensive care doctors or neurosurgeons, can examine the patient for signs of brain activity. If they find no brain activity capable of sustaining life, then the patient has died. This is where the term brain death comes from.


Who can be an organ donor?
I think people will find the number surprisingly low. Of the 600,000 people who die in the UK every year only about 4000 have a chance to be an organ donor. The reason is simple. The moment you stop breathing and your heart stops, the other organs in your body start to die. And every minute that organ doesn't receive blood, it becomes more and more damaged.  Such that if we take an organ, like the liver, within twenty minutes of no blood supply, it will have become so damaged, it won't be possible to transplant it. So in reality, organ donation can only ever happen if the person is receiving intensive care treatment, and having their breathing and circulation supported. Because only then is there the time for a specialised surgical team to travel to the hospital, and make preparations in the operating theatre to carry out the organ donation.

Last year, of that 4000 potential who can donate, only 1000 did so. It's my job, just as it is of every health professional, to make sure that the other 3000 potential donors and their family, were given the opportunity, in an empathic and caring manner, to make that choice. That's where a great deal of work has occurred over the last few years in supporting health professionals in the emergency department and the intensive care to identify donors and then make this approach to the family.

We should however, never forget that apart from organs, many more people who die in hospital may be able to donate, corneas, heart valves and other tissues of the body. The opportunity to give the gift of sight, is an amazing gift to give.


What are the types of donation?
Well there is living donation of organs. Which accounts for about half of all donations.

Donation of tissues, such as life saving heart valves and life transforming tissues, such as corneas, tendons, cartilage and bone, can all be removed up to 24 hours after death.

Donation after Neurologically (Brain) Determined Death (DBD) vs Donation after Circulatory Determined Death (DCD)?
It is probably easier to explain the difference by example.

A patient might have a severe head injury or catastrophic bleed in their brain and this will mean they will require intensive care treatment and be put on a breathing machine. Over the next few days the intensive care doctors might suspect that the brain injury is so overwhelming that the brain has died, but because the patient is being treated with breathing machines and other technologies, their heart is still beating. In this rare circumstance, and we are talking about 1600 patients per year, two senior doctors, usually from intensive care or neurosurgery, will examine the patient for signs of brain activity. If no brain activity is found capable of sustaining life, then the patient has died. This is where the term brain death comes from. If it is the wish of the patient to be an organ donor, than it's possible they will be able donate heart, lungs and other organs, so they may save the life of up to six people.

Another patient, may have suffered a similar injury to their brain. They too, will require intensive care treatment and be put on a breathing machine. But in this example the brain injury might be catastrophic, but not enough to completely destroy the areas of the brain that sustain life. Never-the-less the doctors caring for the patient (and there is always more than one senior doctor involved) might conclude that the patient is, in the end, not going to survive and the treatment is not helping. They will discuss this with the family and if it is appropriate, intensive care treatment will be ceased and a natural death allowed to proceed. In this circumstance, if it is the wish of the patient to be an organ donor, than the intensive care team can delay the withdrawal of the intensive care treatment until a specialised surgical team travel to the hospital, and make preparations in the operating theatre to carry out the organ donation. The intensive care treatment will then be ceased, and once the person's heart stops and death has occured, the deceased is moved rapidly to the operating room for the surgeons to carry out the organ donation. At the moment hearts can't be donated in this circumstance, but usually around three people have their lives saved by this type of donation.

Some quotes I believe
Organ donors, and their families, are heroes. I think organ donation is the greatest gift one person can give to another in peacetime.

There needs to be a balance between the dignity of the donor and their end of life wishes, and the needs of those requiring organ transplantation.

Organ donation is not a solution but it is an answer.

Once a family says yes to organ donation, it initiates one of the most complex medical process in the NHS. Since multiple organs may be being donated, then multiple specialised surgical teams will have to be mobilised, potentially coming from anywhere in the UK, while recipients are notified, sometimes having to be prepared for general anaesthesia, even before the donation has taken place. 

The whole process will take a minimum of 12 hours, often more. Now 12 hours may not seem a long time, when we are sitting comfortably but if you are a family, watching your loved one for days, with very little sleep and in one of the worst tragedies of your life, with young children perhaps to care for, this length of time may be too much. 
Every family that says yes in this circumstance is making a sacrifice, that prolongs their agony. Their motivation is in my experience, two fold; to honour the wishes of their loved one, and a desire to help others. 

Facts
For the past six years there has been year on year increases in the number of deceased donors and for the first time ever there has been a fall in the transplant waiting list.

34% over four years.

18.5 million people on the ODR, 30% of the population.

Damaged organs at retrieval - 1.6%

UK now ahead of Germany in international comparison.

UK consent/authorisation rates for 2010/11 are

Potential DBD donors 65%
Potential DCD donors 51%

All potential deceased donors (DD, ie DBD and DCD combined) 57%

All potential DD on ODR 84%
All potential DD NOT on ODR 49%


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Scotland and the Southwest of England have the best consent rates in the UK.

Organ Donation Through a Lens Competition

The NHSBT “Organ Donation Through a Lens Competition’ films are available on YouTube.

Direct Link HERE

All very inspiring, especially James and Carol’s Story (but I would say that - Carol is on my Organ Donation Committee).

I hope NHSBT make a DVD available for promotion work, and make it available soon. Most hospitals ban YouTube, and even if they don’t, broadband speed is too slow for practical use. A DVD would also allow the films to be shown in schools and other community places.

I am also aware that every time I hear a donor family, or recipient story, that isn’t recorded, an opportunity has been lost. Perhaps we need to create a bank of these stories?

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