Warning: this blog may be distressing to some. It’s not particularly graphic but I talk about death and describe a patient dying peacefully.
Death here in the UK still seems to be a bit of a taboo subject. We don’t like to talk about it and mostly try to ignore that death will happen to all of us – as they say, it’s an ‘elephant in the room’.
It’s getting better than it was. Twenty some years ago when the rusty siren was still shiny and well polished (when I started my training), death was regarded as the enemy. It was to be defeated at all costs. A patient who died was to be resuscitated and wherever possible brought back. Things were starting to change though. It was acknowledged that sometimes when we arrived on scene it was impossible to resuscitate. Some patients would have needed resurrection not resuscitation. A protocol was introduced in our area called the ‘Diagnosing the fact Of Adult Death’ (DOAD). This set out various situations, such as prolonged down time with no bystander Cardio-pulmonary Resuscitation (CPR), or obvious, unsurvivable injuries, in which case we did not attempt to resuscitate. Over the years, in line with evidence-based best practice this guideline has evolved and extended to include children and is now the Diagnosis of Death (DOD) guideline.
It’s now quite common in the UK for a person, especially one who is approaching the natural end of their life to decide with their doctor to establish a ‘Do not attempt CPR’ (DNACPR) document. If the person, in consultation with their doctor and if possible family, agree that a resuscitation would not be successful due to various serious medical problems (co-morbidities) or if successful would not result in a good quality of life then a DNACPR is raised. This tells us that if a patient with us goes into cardiac arrest we are not to attempt any resuscitation. The DNACPR is a distinctive A4 sized single sheet of paper, printed on distinctive lilac paper to be kept in a prominent place in the patient’s home or care plan file so it is known about and easily located if needed.
In addition to the DNACPR document in the UK there are now ‘advance decision’ documents – legal documents where a person can dictate the level and limits to care they wish to receive in the event that something happens and leaves them unable to make or communicate a decision at that time.
Don’t get me wrong: we still resuscitate. I often think that we paramedics are ‘jack of all trades, master of none’. Most of the time we arrive at someone who is ill or injured, assess them to have an idea of what is wrong, come up with a differential diagnosis (list of possible medical problems which would cause the displayed signs and symptoms), treat the symptoms and refer to specialists for definitive assessment and treatment (often the Emergency department (ED) of the local hospital but sometimes other specialist centres). When it comes to resuscitation though I think we are the specialists. We keep up to date with best practice; and now when we get a confirmed, viable cardiac arrest even in these resource-scarce times control send several resources, including senior staff to carry out a full resuscitation at scene. If someone collapses in cardiac arrest now I think they have the best chance ever of survival – provided someone witnesses the collapse, calls for immediate help and starts CPR immediately.
Because we carry out Advanced Life Support (ALS) on scene; when dealing with a medical cardiac arrest, if after 20 minutes of ALS there are no signs of response it is clear that further efforts would not be successful, we terminate the resuscitation and diagnose death.
Over the years I have attended many collapses; some we have successfully resuscitated, some we have not, some we have terminated after starting and some we have not started because of a valid DNACPR or the DOD guideline has been applied. Last week for the first time I witnessed a patient die and was not able to attempt resuscitation. It was very strange and unnerving.
We were called to a care home in our area to a 69 year old female. I’ll call her Josephine in this (obviously not her real name). She was short of breath. My usual mate Tony was on leave, I was on with a fairly new EMT called Mark.
We arrived to find Josephine on the bed in her room. Her daughter and care staff were present. Josephine was obviously struggling to breath. She was on supplemental oxygen but it was not helping. A few quick questions to the care staff and I established that Josephine had breathing problems due to asthma and also heart failure which can manifest as difficulty in breathing. While trying to reassure Josephine and her daughter I listened to her chest with a stethoscope and decided that a nebuliser would provide some relief. Mark quickly set this up for me and I started to explain that we needed to take Josephine to the ED for further help. Josephine shook her head. Her daughter (Sam) explained that Josephine had made it clear to everyone that she had had enough of hospitals and treatments and now just wanted to spend her remaining days in her room in her care home. Sam showed me Josephine’s DNACPR. I explained that the DNACPR was limited to resuscitation and that while Josephine was alive I had a duty of care to her and the hospital may be able to ease her breathing and make her comfortable. Josephine was adamant that she did not want to go. I could tell that Josephine had mental capacity (was able to understand what was going on, understood and accepted the risks of staying home and was able to communicate this to me even though she was breathless). I reassured Josephine and Sam that because Josephine has mental capacity I would respect her wishes and was not allowed by law to take her anywhere against her will. Josephine seemed to relax a little and her breathing improved a little, helped a little by the nebuliser we administered.
I still had to do something though. Josephine agreed to allow me to speak to her doctor by phone to see if her doctor had any further help to offer. I rang the receptionist and gave an outline of the situation then had to wait for the doctor to ring back. While we were waiting I tried to make Josephine as comfortable as possible. I gave another nebuliser and gave a hydrocortisone injection (to lessen the squeezing of her airways caused by the asthma) and a nitrate tablet to dissolve under her tongue (to take the strain off her heart due to her heart failure – her blood pressure was high enough to tolerate this). Her breathing seemed to ease and Josephine relaxed and smiled at her daughter who was holding her hand.
The doctor rang me back and agreed that Josephine would be better off going to hospital. She also agreed with me from knowing Josephine that I would never be able to persuade her to go. She agreed with my treatment so far and agreed to call in and visit after surgery. The doctor rang off and I explained what the doctor had said. I once again offered Josephine a trip to hospital; she grinned and said “not a chance.” She seemed relaxed and comfortable now.
I sat down in a corner of the room to document what had happened and been decided while Sam and Sam’s daughter who had just arrived held Josephine’s hands. The room was very pleasant and fresh and the sun started to shine through the window. Without any words or drama Josephine stopped breathing. It was remarkably unremarkable, Josephine was breathing and then she wasn’t.
I gave the family a few minutes to process this then confirmed that Josephine had died.
It brought home to me how my early training has hammered home the message that death is the enemy to be fought and defeated at all times. Yes, death is often very wrong, stealing life away – but – sometimes it is a natural end to life. Sam thanked me for making her mum’s last hour of life comfortable and for making her death ‘beautiful’.
I’m still trying to process all this myself and wonder about my own attitude to death.