by Professor Dominic Wilkinson, @Neonatalethics
Professor of Medical Ethics, Consultant Neonatologist
Our society has good reason to provide special treatment to people with severe brain injuries and their families.
But our current “special treatment” for a group of the most severely affected people with brain injuries leads to devastating, agonising, protracted and totally preventable suffering.
By Dominic Wilkinson @Neonatalethics
At the bedside of a critically ill infant at 5am this morning I was tempted to tweet the latest meme, adding my voice to a chorus of NHS clinicians over the weekend. Last week, in a speech to the King’s fund, Health Minister Jeremy Hunt launched a drive towards 7 day NHS. In particular, he focused on consultant contracts, proposing that newly qualified hospital doctors will be required to work weekends as a condition of employment.
“Now we must wait, wait. These hours…. The gurgling starts again — but how slowly a man dies! …By noon I am groping on the outer limits of reason. …every gasp lays my heart bare.” Erich Maria Remarque, All Quiet on the Western Front
In Remarque’s novel, the agony of the German soldier, witnessing the slow death of an enemy combatant, is heightened by his own guilt (the narrator had stabbed another soldier in self defense). However, his powerful evocation of distress (and guilt) at witnessing a slow dying is very close to the expressed concerns of parents and clinicians who are watching the death of a child.
Last week various newspapers (see here and here) reported on a planned research study of adrenaline for patients suffering a cardiac arrest outside hospital. The PARAMEDIC 2 trial (full protocol here) involves ambulance officers randomly giving patients either the traditional resuscitation drug adrenaline, or a salt-water solution (placebo). The trial has been strongly criticized by Ruth and Lindsay Stirton, writing in the Journal of Medical Ethics.
There are two main controversial elements to the trial design. The first involves the lack of consent for involvement in the trial, the second involves the researchers’ plan not to inform families of patients who died that their loved one had been in a research trial.
The Court of Appeal has stated that a statement in a capacitous patient’s medical notes that resuscitation should not be attempted (a ‘Do Not Attempt Resuscitation’ Order – DNAR), should usually only be inserted after consultation with the patient: see R (Tracey) v Cambridge University Hospitals NHS Foundation Trust and others  EWCA Civ 822 (17 June 2014).
The facts have been widely aired in the media: see, for example, here.
Mrs. Tracey had terminal lung cancer. Her clinicians indicated in the notes that no attempts at resuscitation should be made. Her family found out about this, and were outraged, saying that the DNAR order should not have been made without consultation with Mrs. Tracey. Their quarrel was not with the medical appropriateness of the determination that resuscitation would not be in Mrs. Tracey’s best interests, but with the procedure – the failure to consult. This, they said, violated Mrs. Tracey’s rights under Article 8 of the ECHR.
The Resuscitation Council, intervening, said that a requirement to consult with the patient would interfere with clinicians’ ability to deliver individual and compassionate care. A patient might, for instance, be very distressed by a discussion about a possible DNAR order.
The outcome can be briefly stated:
- Mrs. Tracey’s Article 8 rights were engaged by recording the DNAR in the notes. This followed from, inter alia, Pretty v UK (2002) 35 EHRR 1.
- Her Article 8(1) rights were violated by failing to involve her in the process
- Article 8(2) required the policy adopted by a Trust in relation to DNAR orders to be sufficiently clear and accessible: see Purdy v DPP  UKHL 45;  1 AC 345.
- The absence of a mandatory national DNAR policy was not a violation of Article 8. Local policies would, if properly formulated, satisfy the demands of Article 8(2)
- The concerns of the Resuscitation Council were real, but could be met by an important caveat: there should be consultation with the patient unless the clinician ‘thinks that the patient will be distressed by being consulted and that distress might cause the patient harm.’ Continue reading
The parents of a young woman named Vickie Harvey, who tragically died at the age of 24 from acute myeloid leukaemia, have launched a campaign to give patients the right not to know that they are terminally ill. Eric and Lyn Harvey claim that their daughter lost the will to live when, after her leukaemia returned following a period of remission, doctors told her ‘in graphic detail’ how she would now succumb to her disease. Eric Harvey told the Daily Mail:
After [Vickie was about her prognosis] she changed – and never really got out of bed again. We knew she was dying, but we feel that, if she hadn’t been told that day, she would have lasted longer’. Continue reading
Imagine that when you woke up this morning, you found yourself lying next to an unconscious stranger. The stranger has a rare life-threatening illness, and unbeknownst to you he was plugged in to your organs during the night. You are now stuck to the stranger. If you disconnect the life support he will die. If, though, you remain connected to him for most of the next year his illness will have recovered, and he can safely ben unplugged. What should you do? Are you obliged to stay attached to the stranger? It might be generous of you to give up your body, and good if you choose to do so, but should we require you to remain connected?
There are approximately 150,000 human deaths each day around the world. Most of those deaths pass without much notice, yet in the last ten days one death has received enormous, perhaps unprecedented, attention. The death and funeral of Nelson Mandela have been accompanied by countless pages of newsprint and hours of radio and television coverage. Much has been made of what was, by any account, an extraordinary life. There has been less attention, though, on Mandela’s last months and days. One uncomfortable question has not been asked. Was it ethical for this exceptional individual to receive treatment that would be denied to almost everyone else? Continue reading