"97 year old female, DIB, terminally ill"
There is always a sense of appreciation when you are sent to someone so elderly. So many years of experience and knowledge. It's hard to comprehend being alive in 1915. George V was king, Herbert Asquith was Prime Minister and the world was at war. It's an era most of us are lucky not to have been a part of but similarly it's an era and generation where respect is embedded. We arrived relatively quickly, despite the weather and the traffic and were met at the door by the patient's son-in-law. A welcoming smile greeted us and we were thanked for coming. It may sound silly but we a rarely thanked for coming, it's not that I look for thanks or notice when it's not given, but I do notice when it is given and appreciate the gesture. We followed him through the house and up to the bedroom of the annex.
Our patient was laying in a cot-bed with her daughter at her side. She looked very frail, very pale and exhausted. Her respiratory rate was about 50 and you could hear the bubbling on her lungs as you entered the room. Her oxygen levels were extremely low so we started her on full flow oxygen. She was suffering an acute episode of heart failure. Basically, the heart wasn't pumping properly and fluid was backing up on her lungs. She needed hospital and she needed it quickly. I started to set up the chair in preparation for moving her while my crew mate did her blood pressure.
"We don't want her to go to hospital. She has said she doesn't want to go."
Unfortunately, she was now in such a bad way she was unable to talk, her eyes fixated on the ceiling, breathing was taking every bit of her being. There was no DNR (Do Not Resuscitate) order in place or any palliative care program despite her late stage kidney disease and heart failure. She had been seen by her GP a few weeks previous, who had stopped all of her medication and recommended palliative care but as yet nothing official was in place. This put us in a the very grey area of capacity and our duty of care to act in the patients best interest. We knew that if we left her at home she would die and if we took our oxygen away she would die, but we also knew that with no DNR in place, if she was to die in front of us now, we would have a very difficult job to justify not starting a resus. As horrible and futile that would be on a 97 year old we have to start unless a DNR is in place.
We explained all this and the family were very understanding of our predicament but also quite rightly adamant that they wanted what was best for her and her wishes.
"She wants to die at home, with us and not in a hospital, we are scared that if you take her she won't come home."
She was right, she probably wouldn't. Our thoughts were, that this episode of illness was terminal and it was going to be a matter of hours not days. We needed a plan B and we needed it pretty quickly! We called our local out of hours GP service and explained the situation. After much much debate and various phone calls later, the GP said he'd be with us within the hour and would be able to provide a DNR for us and some medication for the patient. That was a great relief to the family. It was now not about taking her to hospital but about what we could do to make her comfortable. We spent the hour monitoring her and talking to her daughter and son-in-law. Despite the obvious emotion of the situation they showed great interest in us. We talked about the job, what we did before the job, our families and health care. All the while our patient was lying in between us all, fighting hard. Nothing we had done had improved her breathing, it was as bad as it was when we arrived and that was hard to watch.
Before long the GP arrived. His professionalism and bedside manor was excellent. He engaged with us in everything he was doing and we assisted him drawing up various drugs. He explained everything he was doing to the family and explained he was making her as comfortable as possible. The DNR was openly discussed, written and signed. Everything was in place now for her to die on her own terms.
We had been on scene for just over two hours before her breathing started to settle down. Her blood pressure was gradually dropping, 102/68, 93/52, 77/44, 63/38. My crew mate was outside the room with the GP and the son-in-law whilst I stood with the daughter, who was holding her mums hand tightly.
"Is she going to die tonight?"
I knew the answer but didn't know how to respond. Partly because I was choked up and holding back the tears but also because telling someone that their mum is about to die isn't something that is said easily.
"Stay holding her hand, she knows you're there."
She knew what I was saying and asked us to remove all of the monitoring equipment. I left her by the bedside. She told her mum how much she loved her, how much she has inspired her and how much her grandchildren loved her. I ushered the son-in-law back into the room and we stood in the doorway as they said their final goodbyes. The time was now. She wasn't afraid of death and neither was her daughter. Her respiration rate slowly dropped and dropped until she drew her final breath. Very slowly her eyes closed and she let go. There was a peaceful smile on her face It was in that moment her daughter turned to me with a look of fear and desperation and said:
"No, Has she gone?" with tears pouring down her face.
It was as if as much as she knew it, and had made peace with it, but in the moment of death a fear of death had gripped her. I just nodded my head. I walked over and removed the oxygen mask, unable to hold back the tears trickling down my face. We shared a look, one I'll never forget. A look full of appreciation that our inaction had been the greatest gift we could have given their family. It was one of the most heart breaking and distressing things I've ever witnessed yet beautiful at the same time. To be there with someone who isn't afraid of dying and is ready to die, and share that with the family is a humbling experience and one I will never forget. I was so thankful that we avoided a resus because it would have seemed such a tragic way to end what had been a wonderful lifetime.
We went downstairs and in a very British way made them a cup of tea. That is, after all, the done thing in such circumstances. After saying their final goodbyes they came downstairs, teary eyed yet almost relieved. Relieved that they had been able to fulfil her final wish. Death in any circumstances is difficult, but ultimately it's the sacrifice we must all pay for living.
'To die proudly when it is no longer possible to live proudly. Death of ones own free choice, death at the proper time, with a clear head and with joyfulness, consummated in the midst of children and witnesses: so that an actual leave-taking is possible while he who is leaving is still there.'
Friedrich Nietzsche