Why do families find it so difficult to talk about DNRs and whether resuscitation is appropriate?
What is a DNR?
A 'do not resuscitate' order or DNR (also known as ) is a directive that states you do not want cardiopulmonary resuscitation (CPR), advanced cardiac life support or intubation if your heart or breathing stops. The order is attached to your medical notes to inform those administering treatment that resuscitation is against the patient's wishes. You can also outline your wishes in an advance decision document, which is a binding letter of your wishes you can use to ensure you do not undergo treatments that will keep you alive longer when you are in a lot of pain or have a very limited quality of life.
It seems straightforward, but very few of us have the necessary conversations with our nearest and dearest to outline what we want as we approach end of life and fewer still formalise those wishes in writing. Healthcare staff are aware that, for families, conversations about dying are frequently left unresolved and talking about whether or not CPR will be attempted can be distressing. In such cases, the most senior doctor will make a decision whether it is in the best interest of the patient to resuscitate and will communicate this to family members or anyone named by the patient as someone to be consulted.
What does it mean for families?
I experienced this first hand when my dad passed away. My emotional response to his progressive illness (Parkinson's disease) just didn't keep pace with the reality of his condition, as such it was a huge shock that he quickly deteriorated to the point where the ward registrar stated that there would be no benefit to my dad to be resuscitated.
The conversation left us dumbstruck dwelling on how we missed the opportunity to talk through what we all knew was inevitable. It was a paradoxical situation; we accepted my dad's condition and also the fact that eventually it would contribute to his death. But in the weeks before his fall, in spite of Parkinson's and his dementia, he was in good health and as a consequence we just carried on living our daily lives, having our usual daily conversations and studiously avoiding talking about death.
A DNR is not a catch all, 'do not resuscitate' does not mean 'do not treat'; it is an explicitly written order that supports your right to have your wishes respected past the point where you are unable to communicate effectively.
The Resuscitation Council (UK) has some templated DNR forms, which you can use for reference. You can also consult your doctor, as your local authority or NHS Trust may have its own specific DNR forms, to document your wishes. In the event that your health deteriorates, your doctor will refer to your notes and any DNR instructions you have left. Health service professionals and emergency service responders are legally obligated to respect your decision and mustn't attempt CPR, ACLS, or other life-saving techniques if a DNR is in place.
How to store your DNR
The document needs to be signed and witnessed by counter signatories and a copy should be held with your doctor and your medical records. To be sure that your medical staff know that you've signed a DNR, it is advisable to give them a copy. In addition, it is a good idea to have a copy of your DNR form prominently displayed in your home or somewhere on your person so that paramedics know not to attempt resuscitation.
Judith Kerr, the bestselling children's author who wrote The Tiger Who Came to Tea, revealed she keeps 'a little pink piece of paper' in her hallway signed by a doctor and jokes that she's considered getting a tattoo to make things absolutely clear.
What do we learn - impact on family
The experience of being taken out of the decision-making process as to whether it was appropriate or not to resuscitate, has had a lasting impact on me, principally because I do not want my children to shoulder a burden that I can easily lift by stating my wishes in a Living Will or a DNR order.
I know now that in similar circumstances, my choice is not to be resuscitated (Survival rates after CPR, even in a hospital setting, stand at around 2 out of 10). This is my personal choice, not based on any great insight other than if my body is in a state where it can't keep going without artificial intervention and there is no realistic chance of improving my quality of life only prolonging it, then thank you very much but I'll cash in my chips.
Final Choices has created a template for an advance decisions document which you can download for free.
Have you considered writing an advance decision (or Living Will)? This template can help you outline your care preferences to share with your loved ones.