Having personal experience as a relative also puts a whole new perspective on the whole end-of-life-care issue. This is something that I experienced for myself in 2008 when my own mother died from a chronic lung condition. It was the spiritual epiphany of this event that spurred me on to help our ambulance service develop a better insight into end-of-life care and how we can be of benefit to patients who are dying.
The death of my dear mother was, without a doubt, the most life-altering event of my existence.
She had a condition known as chronic obstructive pulmonary disease (COPD). She had lived with this for many years, but had been particularly unwell for the year preceding her death, and was being looked after mainly by the respiratory team at home where she had her own oxygen and nebulisers. She had suddenly been admitted to hospital with an exacerbation of the condition. The consultant told my elderly stepfather, Bernard, that there was nothing more they could do for her except ‘keep her comfortable’.
Mum was only sixty, and it was not until I went to visit her in hospital and saw her so ill that the terrible truth dawned on me that she was dying. I gathered the family round.
It was the most numbing and distressing thirty-six hours of my entire forty years. My brother Matthew (also a paramedic) rushed down from his home in East Anglia. We sat beside her all night and had some deeply intriguing conversations during those dark hours.
‘It’s quite ironic, isn’t it?’ mused Matt. ‘If either one of us received an emergency call to a patient of Mum’s age, who was unconscious and breathing like this, we would be intubating her, nebulising drugs, giving intravenous diuretics and rushing her into A&E as fast as we could.’
He had a point, and yet we sat there, helpless, while Mum’s breathing continued to bubble and struggle, the relentless dull sound of the oxygen hissing away, a constant background noise making my head spin. In the small hours of the night she grew distressed and started moaning and twitching. I went to find a nurse for some help. The doctor wrote her up for some morphine which the staff nurse administered. I asked her how long it would be; Mum’s vital signs were all over the place, her breathing and pulse rate were hugely elevated and her oxygen saturations very low. She had a raging temperature of 40.1.I wasn’t used to watching people die – I was meant to stop that sort of thing from happening. I was shivering on the little chair next to her, my hand tightly grasping hers, its heat keeping me warm in the depth of the night. Another doctor popped in to see Mum. I was beginning to panic.
‘I want to take her home to die,’ I stuttered.
‘It’s not an option now,’ replied the doctor. ‘I cannot discharge her like this, so close to death.’
It was a truly desperate feeling watching my mother dying, aching to swing into action and ‘do my paramedic stuff,’ when, deep inside, I knew there was absolutely nothing I could do to prevent the inevitable slide into death. Mum’s was as dignified as it could be in the little side room. Both Matthew and I held her hands and watched as her breathing slowly began to fail – when we were finally able to rid her of the oxygen mask – and saw the peaceful look come over her face when her exhausted heart eventually stopped beating.
It gave us both a whole new perspective on death and how it affects those it leaves behind.
We both returned to work, vowing to look into the end-of-life care policies our respective ambulance trusts had in place.
As a coincidence, in June 2008, the Darzi Report was issued by the Department of Health, with the title High Quality Care for All. Some of the concerns raised by Lord Darzi included those surrounding end-of-life care. I happened to glimpse some information on this review and begged my Chief Executive Paul Sutton to consider the possibility of championing end-of-life care for SECAMB NHS Trust. He was enthusiastic about my interest, and, with his encouragement, I attended a conference on the subject in November, and found it extremely engaging.
On the back of that conference – and by talking and writing to some of the speakers and delegates – I was invited to speak at the National Council for Palliative Care conference at Guy’s Hospital in March 2009 on the subject of ‘Dying Differently’. My intention was to speak to the delegates and impress on them the fact that ambulance crews are not just there to perform CPR and dash the patient to hospital, but we can also have a place with palliative care patients, even if it is just to administer pain relief or oxygen.
In the past year our Trust has implemented a general policy surrounding Do Not Attempt Resuscitation and Advance Directive to Refuse Treatment. Any palliative care team can email our Trust with a copy of these orders, and we have the facility to add a history marker linked to an address where a palliative care patient lives, so if an emergency call is generated for that person, the information is passed to the crew that the patient is not to be resuscitated.
Indeed, this facility also extends to GPs and hospital consultants who have patients who have requested DNAR for a variety of conditions – COPD (like my mother), advanced Alzheimer’s, Parkinson’s, or any other illness or condition where CPR is deemed inappropriate. The only thing we require to enable us to safeguard ourselves is the sight of the original unaltered document that is signed by the doctor on arrival at the call.
These DNAR documents have no expiry date and, once signed, are valid until the patient dies or the order is changed for whatever reason.
DNAR in most cases would refer to CPR only, but also has the flexibility to allow withholding other treatment such as artificial nutrition and hydration – although these treatments tend to apply to patients already in hospital. Other ambulance services are working around the Allow a Natural Death (AND) procedure.
What is encouraging, of course, is that the ambulance service is now very much part of the integrated multi-disciplined team, and is consulted by the various primary care trusts in end-of-life care issues; and our concerns and wishes are being registered and used, helping us all with the treatment and services we can offer to patients as they reach the end of their natural lives.
Advancement in training, education, and the ever-increasing policies and protocols we follow now, will no doubt lead to an older, and healthier, nation. It is an amazing fact that treatments that we currently use already lead to heart attack and stroke patients recovering fully and going back to ‘tax paying’ status in a few short weeks. Twenty years ago, these patients would have died, or become paralysed for the rest of their lives.
I often chat with my work colleagues and ask them the searching question, ‘Have you thought about how and where you would prefer to die?’
I am surprised that most of them haven’t even thought about their own death, or what their personal preference is. This alarms me, considering the amount of death we actually deal with in our line of work!
For my own part, should I be suffering from an incurable illness, I will be instructing my GP and get my own DNAR written out, and I will leave it in a big white envelope just by the front door - in the hope that the young, keen ambulance crew who come rushing in will take note, and leave me to die in the peace I hopefully have earned!
APPENDIX III
Should patients at the end of life be given the option of receiving CPR?
by Madeline Bass, BSc, RGN, Head of Education, St Nicholas Hospice, Bury St Edmunds, Suffolk
First published in Nursing Times; 105 4, 26-02-2009.
Cardio-pulmonary resuscitation (CPR) is often unsuccessful and may not always be appropriate at the end of life. This article debates whether the use of cardio-pulmonary resuscitation by healthcare professionals in situations when it is unlikely to be successful feeds an unhealthy appetite to intervene just because it is possible. It explores the problem of offering patients and relatives the choice about CPR at the end of life when it is likely to be unsuccessful.