Joint North West and Yorkshire Regional Collaborative

Attended an excellent day today at the joint North West and Yorkshire Regional Collaborative.

Some of the audience were after my introductory national update talk.
Click HERE to download. 13.7MB and .pptx format.

If you are interested in more on the Spanish 36 donors per million population read a good summary HERE
And if you still are interested read what I wrote comparing Spain and the UK in 2013 HERE.

ICEL Brisbane Australia 2014

I had the great pleasure of participating in this conference. It was particularly satisfying as Brisbane, Australia, is my home town.

The conference was the International Conference on End of Life: Law, Ethics, Policy and Practice 2014 (ICEL 2014). The conference was hosted by the Queensland University of Technology Australian Centre for Health Law Research in Brisbane, Queensland, Australia on the 13-15 August 2014.

Highlights for me were:

  1. The wonderful welcome and organisation of Prof. Ben White and Prof. Lindy Willmott
  2. One of the friendliest conferences I have ever attended.
  3. Hearing Peter Singer speak and getting him to sign the ethics book I own of his!
  4. Finding myself more open to concepts of euthanasia and assisted dying, then I have previously.
  5. Being exposed to different consenting models for organ donation (more about that is a future post)

I delivered two lectures at the conference.

The major keynote lecture I delivered was entitled
Diagnosing Death in the 21st Century.
Doctors diagnose death. It is a simple enough truism but one that appears to have been forgotten in recent debate. There appears to be a growing misunderstanding about what doctors are doing when they declare death. Doctors do not use magic or divine inspiration to confirm death. Instead doctors apply their training and skills in the use of the diagnostic process to the patient before them. This is done in the exact same manner in which doctors would apply the diagnostic process to every other disease process in medicine.

Modern death criteria commenced in 1846, when Eugene Bouchut won the Academy of Science prize in Paris for suggesting a safe and prompt way to prevent premature burial. Bouchut advocated the use of an 1819 device, the stethoscope, where after five minutes of absent heart beat, death could be diagnosed. This French discovery was only slowly adopted worldwide, finally finding its way into the UK Code of Practice for Confirming and Diagnosing Death in 2008. Prior to this, though UK doctors used the stethoscope to diagnose death, there was no published or taught standard, for diagnosing death after cardio-respiratory arrest.

Ultra-modern criteria were developed, again by the French, in 1959 to diagnose death in a rare subset of patients, comatosed and apnoeic patients on intensive care units. This followed the invention of mechanical ventilation and the discovery it was possible for organ function to persist even after the brain had ceased to function.

Advances in resuscitation technologies continue to ask legitimate questions about how death should be defined. There is growing medical consensus that all human death is anatomically located to the brain. There are three sets of criteria doctors use to diagnose death in the 21
st Century, somatic, circulatory and neurological, and they are all criteria for the permanent loss of the capacity for consciousness and the capacity to breathe.

In this lecture I showed YouTube clips of animal experiments predominantly from the 1950-1970s and these may be distressing to some viewers and listeners.
I would wish to state I do not endorse such experiments and I would like to acknowledge the suffering these animals must have gone through and express my gratitude to their contribution and sacrifice.

The Podcast is available:

Podcast (recorded in my hotel room the night before)

The vidcast of the lecture is available in the Vidcast page of this website and the PDF (large 62.4 MB file).

The second lecture I delivered was
How the UK overcame the Ethical, Legal and Professional challenges in Donation after Circulatory Death

The UK has experienced an exponential growth in Maastricht Category III and IV Donation after Circulatory Death (DCD). Since the year 2000 DCD has increased 1321% (from 38 donors to 540), compared to a 6.3% rise in Donation after Brain Death (DBD) (from 734 donors to 780). DCD accounts for more than 40% of all UK deceased organ donation, which with the Netherlands, are the highest rates in Europe. This increase still hides the cultural change in deceased donation that has occurred in the UK. Since 2010 more families have consented to DCD each year then DBD, making it the number one commenced deceased donation pathway in the UK.

To achieve such growth the UK had to explicitly address the ethical, legal and professional challenges inherent to DCD. Significant concerns were raised, and continue to be raised in other countries, surrounding how DCD satisfies the Dead Donor Rule and the ‘Consenting Donor Rule’, the absolute need to ensure actions to facilitate donation remain in the interests of the dying patient and are in alignment with their wishes and the wishes of their surrogate decision makers.

Recommendation 3 of the 2008 UK Organ Donor Taskforce recognised that, ‘Urgent attention is required to resolve outstanding legal, ethical and professional issues… Additionally, an independent UK-wide Donation Ethics Group should be established.”

Since 2008 there have been seven UK publications, seeking to address issues in deceased donation. Most importantly to DCD were criteria for the diagnosis of death after cardio-respiratory arrest, legal guidance recognising that obligations in DCD are the same as for any other living and incapacitated patient, a duty on doctors to explore donation at the end of life from the General Medical Council and a comprehensive exploration of ethical issues in DCD by the independent UK Donation Ethics Committee.

Again the
podcast and vidcast (both recorded in my hotel room the night before) and PDF are available.

Explaining death determined using neurological criteria to families

In 2013, in preparation for a pilot of a new national deceased donation simulation course for intensive care trainees, I emailed many colleagues in the UK to see if they were aware of any documents to help guide trainees in how to explain ‘brain death’ to families. Surprisingly, very little had been done in this area. This led to an email chain discussion from which the below was created.

There is no official validation of the below but it does reflect how I conceptually understand death determined using neurological criteria and how I approach communicating this to the families of patients under my care.

Explaining death determined using neurological criteria to families
(Actors representing family from the Nottingham Deceased Donation Course)

Essential message
• Death is suspected
• Tests to confirm death

Key points that are good to communicate
1. The brain injury is so severe that death is suspected to have already occurred
2. There is a plan to carry out a set of tests to see if the patient will ever regain any consciousness or ever breathe again.
3. If the tests confirm that these essential brain functions are permanently lost; this will mean the patient has died
4. The tests will be done carefully by two senior doctors
5. The tests will not hurt the patient
6. The tests will be done at the bedside by examining the patient and as part of the tests the patient will be removed from the breathing machine to see if the patient can breathe
7. The set of tests will be done twice
8. There is an opportunity for family to observe one of the tests if desired
9. If the tests do not show the presence of any of the essential brain functions, it will confirm that death has already occurred.

The order in which these key points is relayed will vary according to individual style and should be guided by paying careful attention to family reactions.

1. The essential message is the suspicion that death has already occurred and tests are going to be done to confirm this suspicion.
2. Avoids any mention of the confusing term ‘brainstem death’ or ‘brain death’ that is loosely used in the media and difficult conceptually to explain even for doctors. The Academy of Medical Royal Colleges (AoMRC) Code of Practice (2008) does not use either term but instead refers to the ‘Diagnosis and Confirmation of Death in a Patient in Coma.’
3. ‘Essential brain functions’ and the link to these being the capacity for consciousness and the capacity to breathe: this is in line with AoMRC, “Death entails the irreversible loss of those essential characteristics which are necessary to the existence of a living human person and, thus, the definition of death should be regarded as the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe.”
As a country that accepts brainstem death versus whole brain death, an emphasis on essential brain functions does not preclude that other brain functions may persist (eg anti-diuretic hormone production) just that these other brain functions are not essential for the capacity for consciousness or the capacity to breathe.
4. ‘Two senior doctor’ emphasises the importance in which the tests are being considered and the second opinion this brings.
5. Reassurance the tests will not hurt the patient. It is important the apnoea test is done last in any set of tests to ensure no brain stem reflexes are present before exposing the patient to a raised carbon dioxide level.
6. A short explanation of the tests with the emphasis on the apnoea test, which it is believed important in helping families understand and accept that death has occurred.
7. The tests will be done twice, again to emphasise the importance in which the tests are being considered.
8. An opportunity to witness the tests is provided. It is believed that witnessing the tests may be helpful in helping families understand and accept that death has occurred. It also encourages trust. It is usually best to let the family observe the second set of tests, as this enable the doctors to carry out the first set with less distraction, when reflexes are more likely to be present.

Other information that could be relayed in on-going discussion with the family
a. Consciousness as arousal / wakefulness and awareness (thoughts and feelings)
b. She will never wake up and never recover
c. It’s only the machine that is breathing for the patient and only because of the breathing machine is the heart still beating. Were we to turn off the breathing machine the patient would not breathe and the heart would stop.
d. No one who has had these tests performed correctly has ever woken up or breathed again anywhere in the world
e. Media reports are usually mistaken or the tests were done incorrectly
f. Persistent vegetative states and deep coma are different conditions
g. The anatomical location of these essential functions is in the brainstem, where the cranial nerves also arise. Which is why examination of the brainstem reflexes allows conclusions about these essential functions to be made.
h. Spinal reflexes may be present, as the spinal cord is not usually damaged.
i. Acknowledging that what is being described is commonly referred to as brainstem dead or brain dead; but often this term is used wrongly in the media.
j. Showing the CT scans and the use of other visual aids

An example
Accepting that individual styles may vary and rote quoting of any text would appear forced and unnatural, the below paragraph is offered. It is vital that family reaction and understanding is assessed as the information is relayed, and if there are points of confusion or distress, or the information is too overwhelming, that further explanation or time is given before proceeding.

The imagined case is for Margaret a middle-aged woman who had an overwhelming subarachnoid haemorrhage, who is in intensive care awaiting testing.

"As you know Margaret has had a very bad bleed in her brain. As you saw, she lost consciousness almost immediately and the paramedics had to put the breathing tube in because she was no longer breathing for herself. Since coming to hospital we have not seen her breathe and many of her brain functions appear to have ceased.

The scan of her brain is very abnormal and devastating. My fear is that the damage Margaret has sustained to her brain, is so severe, that she may have already died.

Another senior doctor and I are planning to carry out some tests on Margaret to see if she will ever regain any consciousness or ever breathe again. If the tests confirm that these essential brain functions are permanently lost, this will confirm to us, that she has died.

The tests won't hurt Margaret. One of these tests will be to shine a light in her eyes to see if her pupil gets smaller, much as the nurses have already been doing on the intensive care. We will also take her off the ventilator to see if she can breathe by herself.

The tests will be done twice. We’ll do the first set of tests shortly but we’ll give you the chance to watch the second set of tests if you wish. Some families find this helpful, to see for themselves.

I’m very sorry; but I expect the tests will confirm that she has already died.’

A Showcase of Initiatives and Activity from the Midlands

Screen Shot 2012-12-19 at 21.40.49
Midlands Update December 2012
If you want to know what the Midlands is up to just click on the link above, for a short pdf talk by me.

On the 28th November the Midlands showcased its initiatives and activity at our biannual Regional Collaborative.

Just look at this agenda to show the energy of the Organ Donation Committees in the Midlands:
Welcome, Programme Outline and Update, Dr Dale Gardiner, Regional CLOD, Midlands and Susan Richards, Regional Manager
Donor Case Study Dr John Hawkins, CLOD, Stafford Hospital
Military Patients CDM Considerations for Military Potential Organ Donors Cathy Miller & Elaine Holyday, SNODs, QEHB
National Donor Recognition Plan Dr Dale Gardiner, Regional CLOD, Midlands
Using Twitter to Raise Awareness of OD Julian Hull, CLOD, HEFT
Using Donor Stories within your Hospital Trust Carol Donaldson, Donor Mum to Maximise Public Promotion Louise Hubner, SNOD, RDH
Using Recipient Stories within your Hospital Diana Higman, Liver Recipient Trust to Maximise Public Promotion Louise Hubner, SNOD, RDH and Katie Fox, SNOD, UHNS
Survey Monkey Findings
Setting up Organ Donation Web Page Jacqui Watkeys, Head of Library and Knowledge Services & Emma Perks, E-Developer, WHC Trust
Dudley Council and NHSBT Partnership Steve Walthro, DCC, RHH and Zeeshan Asghar, Partnership Development Manager, RHH and Becky Timmins, SNOD, RHH
Timely Identification and Referral of Potential Dr Paul Murphy, National CLOD Organ Donors Strategy Launch

The majority of these talks are available in the Professional Section of this website (log in required).

Wow, great stuff, and thank you for everyone who attended and presented.

The organ Donor Taskforce set a target of a 50% increase in organ donors over 5 years - finish date for the five years is the 31st March 2013. The Midlands is on track to meet this target! That is something we should all be proud of.

Donation Education for Medical Trainees

Recommendation 11 of the Organ Donor Task Force (2008) was that:
“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.”

There has been little progress to date in this area.

In Australia and New Zealand, all intensive care trainees must undertake the compulsory Australasian Donor Awareness Program (ADAPT). An outline of the one-day course is given in Appendix A. Course size for ADAPT is usually restricted to 15 and is run several times a year in each jurisdiction. ADAPT is delivered in two formats – Medical ADAPT (intended for both trainees and clinical specialists of intensive care and emergency care) and General ADAPT (intended for nurses including intensive care, emergency departments and operating theatre nurses, allied health professionals, social workers, and others involved in donation). APAPT is only the first part of a larger Professional Education Package (PEP), further described in Appendix A. The funding, coordination and delivery of the PEP comes directly from the national organ procurement organisation and courses are free to attend.

In Spain all residents in Critical Care do a specific course organised by the Spanish society of intensive care (SEMICYUC) in coordination with the national agency for organ donation (ONT). See Appendix B. There are three or four courses every year. It's a two-day course (20 h) with 4 hours of simulations. Residents usually take the course during their 3rd or 4th year of specialisation. It would appear, from the programme, that critical care staff have little direct involvement in uncontrolled Donation after Circulatory Death and this is not taught.
Email correspondence with Canada and USA donation clinicians has revealed a lack of national courses in donation, but an interest in establishing one, perhaps on an international scale using the model of ATLS. Current education in organ donation in the USA is delivered predominantly by the organ procurement organisations.
A variety of education activities have been run in the UK, including education days and simulations, but these are generally voluntary, ad hoc, locally focused and lack any national endorsement. Indeed it is unknown how many such courses exist in the UK and a survey of content and structure might prove helpful.
If recommendation 11 of the ODTF is to be satisfied, there is a need to establish medical training in donation in the UK.
The initial development could focus on medical trainees, current medical staff or a mixture of both. The advantage of focusing on trainees is they are a more manageable target audience, and have curriculum and training competencies that must be satisfied.
Possible trainee target audience:
All intensive care medicine trainees
All emergency medicine trainees
All neurosurgical trainees
Expanded audience:
Anaesthetic trainees (“if you are going to pull a tube, have you considered organ donation”)
Neurology trainees
Stroke physician trainees
Faculty and Royal Colleges (traditionally the UK faculties and colleges approve courses, they do not fund (or deliver) courses).

Appendix A: Australia and New Zealand


Elements of the Professional Education Package (PEP)
The PEP comprises three distinct, consecutive elements:

Unit 1 – Introductory training – Australasian Donor Awareness Program (ADAPT)

The Australasian Donor Awareness Program (ADAPT) is a one-day workshop that provides introductory training on the clinical processes involved in organ and tissue donation, the grief experienced by families facing the death of a loved one, and principles of sensitive communication.  ADAPT is delivered in two formats – Medical ADAPT (intended for both trainees and clinical specialists of intensive care and emergency care) and General ADAPT (intended for nurses including intensive care, emergency departments and operating theatre nurses, allied health professionals, social workers, and others involved in donation).

Unit 2 – FDC Core Workshop

The FDC Core Workshop is a two-day workshop designed to build on ADAPT and provide health professionals with a more detailed theoretical understanding of grief and the communication needs specific to families dealing with death and considering the opportunity of organ and tissue donation.  The FDC Core Workshop is intended chiefly for health professionals with some involvement in family conversations about consent to donation, such as intensivists, emergency specialists, bedside nurses, social workers, and donor coordinators.

Unit 3 – FDC Practical Workshop

The FDC Practical Workshop is one-day workshop that builds on ADAPT and the FDC Core Workshop, and provides participants with the opportunity to practice their skills of sensitive communication, particularly in challenging scenarios, through group activities and role-plays.  It is designed chiefly for the health professionals responsible for raising the option of donation with families and seeking their consent, but will also be available to broader audiences within the donation sector.

Appendix B: Spain


ENGLISH TRANSLATION (Google Translator and my best guess)
Organ donation and transplantation for intensive care residents.

Spanish Model by Rafael Matesanz

Results of the Donation and Transplantation Programme

Clinical Diagnosis of Brain Death: aetiology, preconditions, clinical tests including apnoea, observation period and infratentorial pathology.

Diagnosis of Brain Death in Complicated Cases

Ancillary testing: neurophysiological

Ancillary testing: cerebral blood flow

Evaluation and selection of organ and tissue donors.

How can we expand the donor pool? Expanded donor criteria.

General maintenance of the organ donor.

Maintenance of the donor heart.

Maintenance of the donor lung.

Maastricht Type III and IV donation. 15 mins

Communication techniques.

4 x1 hour simulations
Workshop on brain death.
Workshop on the maintenance of the multi-organ donor.
Workshop in transcranial doppler.
Family interview workshop.

Postoperative care in heart transplant patients.

Postoperative care in lung transplant patients.

Postoperative care in liver transplant patients.

The intensivist and transplant coordinator: teamwork

Workshop transcranial Doppler sonography simulator (30mins)

Clinical cases of brain death

Clinical cases on the selection and maintenance of the multi-organ donor.