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:
- The wonderful welcome and organisation of Prof. Ben White and Prof. Lindy Willmott
- One of the friendliest conferences I have ever attended.
- Hearing Peter Singer speak and getting him to sign the ethics book I own of his!
- Finding myself more open to concepts of euthanasia and assisted dying, then I have previously.
- 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 21st 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.
Two crucial hearings today in fight over Jahi McMath CNN January 3rd 2014
Terri Schiavo’s Family Urges Life Support For Brain Dead Teen TIME US January 2nd 2013
Right-To-Life Family Wins Jahi Court Order Sky News December 31st 2013
New York doctors urge ‘hope’ for ‘brain-dead’ Jahi McMath Daily News December 31st 2013
When 'life support' is really 'death support' CNN December 29th 2013
Judge Rules Jahi McMath, 13-Year-Old Declared Brain Dead Following Tonsillectomy, Can Be Taken Off Life Support Huffpost December 24th 2013
By D Gardiner
If continued treatment is not in the patient’s overall benefit, this decision having been made by multi-disciplinary team and informed by discussion with the family (assuming the patient lacks capacity), an end of life approach is taken that changes the focus of care from one of sustaining life, to one of providing comfort and dignity. Cessation of life-sustaining treatments, that has been concluded will not sustain life or are not to the patient’s overall benefit, now becomes appropriate. Exploration of a patient’s wish to donate organs and tissues forms part of end of life care.
In critically ill patients, in an intensive care environment, the life sustaining treatments most often ceased in end of life care are respiratory and circulatory support.
Respiratory support can be considered in two parts: the airway and the breathing.
Extubation is the removal of an endotracheal tube (breathing tube) from the airway. Endotracheal tubes are plastic tubes of approximately 25 cm length and are usually inserted into the patient’s mouth and stop in the trachea (wind-pipe), just before the trachea divides to aerate the two lungs. In an awake patient endotracheal tubes are very uncomfortable and would usually necessitate sedation to allow the patient to tolerate.
Endotracheal tubes help to sustain life in critically ill patients by:
holding the airway open (mouth, tongue, oral soft tissues) when consciousness is low or there is damage to the airway
allowing the patient to be connected to mechanical ventilation to allow respiration (breathing)
allowing toileting (suctioning) of the airways and lungs when the patients own cough is weak
Another airway device in the critically ill is a tracheostomy. This is like a small version of an endotracheal tube and is inserted via the front of a patient’s neck into the trachea. Removal of a tracheostomy is generally called decannulation. Although not covered here, many of the principles are the same between extubation and decannulation, though decannualtion is rare in withdrawal of life-sustaining treatments.
Breathing support in critically ill patients can include higher inspired oxygen and mechanical ventilation, either by a mask (non-invasive) or via an endotracheal tube or tracheostomy (invasive). Only invasive mechanical ventilation will be considered but similar principles apply.
Whilst clear guidance, backed by a large literature and legal base, for withdrawal of life-sustaining decision making has been given by the General Medical Council (1), British Medical Association and the UK Intensive Care Society (2) very little guidance has been published on the method this treatment withdrawal should take, despite the degree of anxiety this area creates for intensive care staff. In the withdrawal guidance documents referred above, the British Medical association offers nothing on method of withdrawal in intensive care and the GMC (2010) only gives guidance for nutrition and hydration. The Intensive Care Society (2003) is more helpful (paraphrased below) but does not address common withdrawal practices on intensive care in detail, nor is there any consensus in intensive care practice.
Paraphrase of the Intensive Care Society Guidance (2003)
It is vital that whichever drugs or combination of drugs are used, the aim is to relieve the patient’s pain and distress. The dosage needs to be adjusted to relieve the patient’s suffering but not to intentionally hasten death. Others responsible for similar patients should not regard drugs and doses as excessive. Paralysing drugs must always be avoided.
Treatments aimed at primarily maintaining organ function but which may prolong death should be withdrawn. Examples may include vasoactive drugs, antibiotics and intravenous fluids. Respiratory support may be withdrawn. This may involve reducing the FiO2 towards (0.21 = normal air), lessening the ventilatory support and eventually where appropriate, extubating the patient.
Euthanasia is illegal in the UK and plays no part in the withdrawal of treatment from critically ill patients.
With withdrawal of life sustaining treatment a necessary precursor for any controlled donation after circulatory death (DCD), the lack of clear guidance is a cause of anxiety to intensive care staff and an obstacle to donation. The Department of Health Legal Guidance on NHBD (2009) and UK DEC’s own DCD Guidance (2011) did not address method of withdrawal.
Table 1 compares the benefits and burdens (harms) of three common methods of treatment withdrawal, in critically ill patients, in an intensive care environment. From the considerations in Table 1, when the benefits and burdens are weighed, extubation may be an appropriate method of treatment withdrawal in DCD.
International evidence on withdrawal of life sustaining practices in intensive care suggests a prevalence of only 9-18% (3,4) but for DCD the prevalence appears much higher 69-100%. (5-10)
UK withdrawal practices are unclear. The only UK study from the above DCD references is Suntharalingam (7), a prospective observational study of 191 DCD patients from nine UK centres, in which 79% of patients were extubated. UK data supplied by NHSBT from the Potential Donor Audit (October 2009 – July 2012) for all possible DCD donors for whom treatment was withdrawn, suggests an extubation rate of 47% and a trend to increasing frequency over time (44% October 2009 - 50% July 2012).
It is however, only assumed extubation is essential for successful DCD and the limited comparative evidence suggests that extubation does not increase the likelihood of successful DCD. (6, 10)
Questions that need addressing are:
Why is there an apparent discrepancy in extubation frequency between DCD and non-DCD patients in intensive care practice internationally?
Is this departure from usual practice because there is a belief that extubation is more likely to facilitate donation? Is this belief true?
Is this departure in usual practice ethically appropriate?
The Department of Health Legal Guidance says very clearly one’s action must ‘not cause them harm or distress, or place the patient at significant risk of experiencing harm or distress’. Does extubation and other methods of withdrawal of respiratory support, respect best interests or risk harm?
Guidance would be very much appreciated by the intensive care community.
Table 1. Comparison of three common methods of treatment withdrawal in critically ill patients in an intensive care environment.
|Leave on the ventilator with reduced settings.||Take off ventilator but leave the endotracheal tube in.||Extubate (remove the endotracheal tube and the ventilator).|
|Benefits||Removes a futile treatment.|
Believed to shorten the dying process.*
|Removes a futile treatment.|
Believed to shorten the dying process more.*
Removes artificial technology to potentially create a more natural environment.
|Removes a futile treatment.|
Believed to shorten the dying process the quickest.*
Removes the most artificial technology to potentially create the most un-interfered with natural environment.
|Burdens / harms||Believed to prolong the dying process the most.**||Believed to prolong the dying process less.**||Believed to prolong the dying process the least.**|
Loss of the airway may lead to ‘death rattles’ and noisy breathing, potential for gasping, choking and obstructed breathing, which may be distressing for relatives and staff to observe and potentially distressing to the patient.
* Shortening the dying process may be advantageous to both the likelihood of donation after circulatory death proceeding and reducing warm ischaemia, which will improve the quality of any organs that are donated. Methods to shorten the donation process might be considered in the best interests of someone who wishes to donate because of these advantages. However, shortening the dying process may be perceived as having the intention to hasten death and might alternatively be regarded by some as euthanasia (there is no doctrine of double effect) and therefore potentially illegal regardless of the persons wishes.
** Prolonging death is the opposite of shortening the dying process. Prolonging death might be considered to place the patient and their family at increased harm, by increasing the duration of any pain or distress.
- GMC (2010) “Treatment and care towards the end of life.” www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.asp
- S.L. Cohen; J.S. Bewley; S. Ridley; D. Goldhill and Members of The ICS Standards Committee (2003) “Guidelines For Limitation Of Treatment For Adults Requiring Intensive Care.”
- Sprung et al (2003) “End-of-Life Practices in European Intensive Care Units – The Ethicus Study. JAMA August 13 290(6) 790.
- Truog et al (2001) “Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical care Medicine, Crit Care Med 29(12): 2322.
- Lewis J, Peltier J, Nelson H, et al. (2003) “Development of the University of Wisconsin donation After Cardiac Death Evaluation Tool.” Prog Transplant; 13:265-73.
- DeVita MA, Brooks MM, Zawistowski C, Rudich S, Daly B, Chaitin E. (2008) “Donors after cardiac death: validation of identification criteria (DVIC) study for predictors of rapid death.” Am J Transplant; 8:432-41.
- Suntharalingam C, Sharples L, Dudley C, Bradley JA, Watson CJ. (2009) “Time to cardiac death after withdrawal of life-sustaining treatment in potential organ donors.” Am J Transplant; 9:2157-65.
- Yee AH, Rabinstein AA, Thapa P, Mandrekar J, Wijdicks EF. (2010) “Factors influencing time to death after withdrawal of life support in neurocritical patients.” Neurology; 74:1380-5.
- de Groot YJ, Lingsma HF, Bakker J, Gommers DA, Steyerberg E, Kompanje EJ. (2011) “External validation of a prognostic model predicting time of death after withdrawal of life support in neurocritical patients.” Crit Care Med.
- Wind T, Snoeijs MG, Brugman CA, et al. (2011) “Prediction of time of death after withdrawal of life-sustaining treatment in potential donors after cardiac death.” Crit Care Med.
Any comments please email me (link bottom of the page) and I will post.