The DNR question makes parents feel that their child’s right to life, and quality of life are being questioned. Do it once, then leave it alone. Parents can agree in what circumstances it should be asked again.

Beware self fulfilling prophecies – if you are pessimistic, you may limit what they may achieve in future.

There is no such thing as false hope. Hope is today’s dream for tomorrow, it helps you keep going, putting one foot in front of the other.

Parents have needs too. Helps when professionals presume things will get better, when they acknowledge patient is beautiful, happy, loved; when they are pleased with progress, when they share good news as well as bad.

Careful with words in front of parents and siblings eg end of life pathway, dysmorphic, lethal condition.

The discipline of medicine concerns the manipulation of knowledge under uncertainty (Siddharta Mukherjee).

“When you consider that CPR would be futile for a patient dying from a terminal illness in hospital, there is no need to distress the patient with a discussion about CPR before completing the DNACPR form.”

This was considered appropriate advice until June 2014.  Patients cannot demand futile treatment and so, if the decision has been made not to resuscitate, asking the patient’s views could lead to difficulties if he/she wanted cardiopulmonary resuscitation. In addition, if handled badly, the patient may be left with the misunderstanding that a life-prolonging treatment was being withheld.

In landmark judgement re: Janet Tracey, who had terminal lung cancer, Lord Dyson said the hospital trust violated Mrs Tracey’s right to respect for her private life under Article 8 of the European Convention of Human Rights when they placed a DNR order in her notes without informing her.

“Doctors have a legal duty to consult with and inform patients if they want to place a Do Not Resuscitate (DNR) order on medical notes.  A DNR decision is one which will potentially deprive the patient of life-saving treatment, so there should be a presumption in favour of patient involvement.  There need to be convincing reasons not to involve the patient. Doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them”.  June 2014

Relatives of patients should never be asked to make decisions about resuscitation status, but it is good practice to take the opportunity to inform them if a patient is known to be dying. Relatives cannot make treatment decisions unless they have legal powers to do so. Even then, they cannot demand treatment that is considered futile by medical staff. However, if a DNACPR order is written, it may offer an opportunity to inform them (and the patient if appropriate) that the patient is expected to die soon and that active care may continue but will stop short of CPR.

Carl Winspear case 2011 – High court held DNACPR wrote at 3am without consulting family was breach of human rights. Phone call would have been “practicable” albeit inconvenient. The defence that it was a clinical decision declared a “misunderstanding as to the purpose of the consultation… Input into decision making process… Dignity… Family can take on board and respond to news”

When a patient is being discharged home to die, patient and carers should be informed and in agreement with a DNACPR order as the paperwork will be kept in the house and could be discarded if not understood or wanted by the family. If at all possible, a DNACPR order should follow the patient home when death is expected. The existence and benefits of the order should be explained to the patient (if lucid and mobile) and carers, as it will most likely be seen by them and could cause distress if not known about in advance. It will only be effective if accepted by those caring for the patient, as they would be responsible for calling for emergency assistance or not in the event of death.

It should be remembered that the decision not to resuscitate is one for the medical team or the patient, but not the relatives. However, asking for a patient’s agreement with a DNACPR decision already made may cause unnecessary distress. Good, sensitive communication about end-of-life issues is important and may be prompted by a DNACPR order. The issue of time and skills needed to do this is acknowledged and the need for further clarity and discussion is apparent.

Allow Natural Death – preferable terminology?