Human rights solicitor Merry Varney discusses do not resuscitate decisions and their effects on families
For as long as I can remember I have known my mum's wishes for end of life care if she became incapacitated. I'm not sure why we started discussing these types of issues - mum has no medical condition making it necessary and we don't have relatives affected for example. Perhaps it is because she is a retired doctor?
The research shows that the overwhelming majority of doctors would choose to be Do Not Resuscitate commonly known as a DNR (88.3% of those surveyed in 20141) and the reason often stated is because doctors, from their early training, see the burden and potential cruelty of aggressive treatment when death is inevitable in the short to mid-term, it being an inevitability for all of us long term.
Doctors also understand the dying process and that often other vital organs will fail before cardio-respiratory arrest.
I believe that by properly informing patients and their families, they too would often choose a natural death, at home perhaps, with loved ones by the bedside, rather than fighting the inevitable in hospital and potentially receiving treatment that keeps them 'alive' but totally incapacitated.
So what is going wrong?
I speak to four or five patients and their families every month with queries about DNR decisions.
Some are just desperate to understand what it means; some want to challenge it.
What is overwhelmingly clear, and is a common strand across the enquiries is that trust in the doctor and other healthcare staff can be irreparably damaged by a poor DNR decision making process.
Families leave me voicemails calling their loved one's doctor a murderer such is the level of mistrust and suspicion aroused by finding a DNR decision has been made without prior information and consultation.
This is heightened by the impression that being labelled DNR affects other treatment decisions and some insisting it doesn't - the truth as I see it: a DNR decision shouldn't affect anything other than provision of CPR 2, but the research says otherwise3.
Over a year ago three Court of Appeal Judges ruled unanimously that Janet Tracey suffered a violation of her human rights when a doctor made a DNR decision without informing her, or any prior consultation.
The detailed judgment set out the requirements of a lawful decision making process while acknowledging these are difficult decisions.
Sadly, from the conversations I have had with clients, the judgment is not being followed and unlawful DNR decisions remain widespread.
One of my greatest concerns is the lack of accessible patient information. Some Trusts and CCGs have taken on board the outcome of the Tracey case and I've seen some fantastic comprehensive policies - with public information leaflets and guidance to help healthcare professionals discuss this difficult topic.
These are sadly few and far between. Even the Resuscitation Council's website section for the public simply has the guidance aimed at healthcare professionals rather than something aimed specifically at patients and their families.
Without prior information being made available it is no wonder patients and their families view CPR as it is regularly portrayed in the media - as a quick fix - rather than treatment with usually very low prospects of success and other risks, and feel aggrieved by being told it is being withheld.
I do appreciate these are very difficult and sensitive decisions to make and that talking about the topic is in itself emotive.
I have seen the devastating impact advising a client that they have no grounds to bring a successful legal case can have and the fact that delivering negative advice can sour an otherwise good relationship.
I also know how I feel not being able to use my skills and experience to assist a particular client, and how I feel about signposting a client to other lawyers for a second opinion.
I therefore have huge sympathy for the professionals labelled as uncaring and worse given the negative advice they are giving involve matters of life and death.
So in case it helps...here is my guide to the decision making process.
To healthcare professionals - please talk to your patients and their families in advance, provide written information and give them a chance to understand more about CPR & DNRs before having the actual discussion and making a decision. In the words of Susan Block, a palliative care specialist, “A family meeting is a procedure, and it requires no less skill than performing an operation.”4
To everyone - dying is inevitable so we must be prepared to hear the advice from healthcare professionals that resuscitation attempts are unlikely to work and could cause harm.
It is important you are able to participate in the decision making process but try and remember the healthcare professional is extremely unlikely to be motivated by factors other than what they consider is best for their patient.
And finally… to help decide what is ‘best’, it is worth us all thinking in advance about what is most important to us when time becomes short and making sure someone knows our wishes in case we can’t voice them ourselves.