This is going to be a tough post to write. I know this as I have been running trying to process the events, in my mind, for weeks. It will also be a long one. I hope you make it to the end.
As always I have tried, as much as possible, to protect the people and services involved by offering some sort of anonymity. I have altered specific details out of respect to the patient, relatives and personnel involved. However I must stress, that this is as close to what actually happened as I can make it. I want to put you, the reader, into the situation so that you may be able to understand how the end can go wrong.
This job demonstrated that every system is subject to failure. That patient’s can slip through the safety net that is there to protect them.
If you know of someone, or love someone, with a terminal condition please make sure they are registered with the palliative care team. Most importantly, make sure their wishes are recorded. Something as simple as a DNAR sheet can really make a huge difference.
Mid evening, on a dreary winter’s night. The wind was up, the half hearted attempt at rain left water standing in the air. Anyone stood outside would soon be sodden as the wind wrapped a blanket of water around them.
I walked into the office to start my 12 hour shift and was met by the last of the day shift anxious to escape. “You’ve got an agency practitioner on with you tonight, Claire will be in a little later and Dr. F is in Consultation Room 1. It’s been a busy day, but we’ve only left you one outstanding visit.” With that, I was left to make my own introduction to the agency practitioner.
I explained to Tony (agency practitioner) that this was not my normal work place either. However I quite often pick up extra shifts with this base and have done for a few years. I explained that Claire was as a full time Nurse Practitioner with the service and the fact that there would only be the 3 of us, plus the Doctor, meant that we were severely understaffed.
The service is classed as non-emergency, although we still have target times to meet. Ours range in value 1 hour, 2 hour, 4 hour and 6 hour. Any patient’s requiring Emergency treatment will always be directed to triple 9.
I wasn’t overly concerned by the lack of staff. It wasn’t anything new. The service has been operating for over a decade and through the years it has often been the forgotten team suffering from poor resources as new initiatives have been dreamt up.
We take minor’s from A&E, those we cannot safely treat re-enter the system at the assessment stage. We see those who ‘cannot get in’ to their GP, or have not registered with a GP, and have forgotten all about the Walk-In Centres.
We see the patients who are unable to leave their homes to see the GP. We work with the Palliative Care Teams and the District Nurses.
The goal is the same that it has always been. To reduce the number of unnecessary hospital admissions by treating the patient before they enter the system. Hopefully at the same time we reduce the number of unnecessary 999 calls and relieve a little pressure on our Front Line brethren.
As I sat down at the terminal to look at the jobs on the system, I asked Tony about his background. I immediately felt at ease. There wasn’t much he hadn’t done. Since qualifying he had worked in Cardiology, ICU, A&E and now his full time job was with an Ambulance Service from another region.
Suitably impressed with his credentials and experience, far out stripping my own, and he seemed to be a decent affable guy too. Not like some Agency workers I have had the misfortune to spend 12 hours with, who are only there for the money and spend the entire time asking “is it nearly home time yet?” whilst doing little else.
A few clicks on the mouse confirmed that there was only one home visit on the system. The day shift had sensibly given the caller an ETA which although still an hour away, left us within the target time. There were a few appointments for the Doctor and a couple of telephone triage calls that needed to be made.
“You do the triage calls; I’ll check the vehicle and equipment. When Claire arrives we’ll head off to the home visit”. Tony nodded in agreement, saying that he was happy to take my lead.
I always like to assure myself that all is good with the vehicle before I leave base. I have the luxury of not being called out as soon as I walk in (most of the time). So I check the vehicle, the equipment and the drugs stock. I know that once I leave the base on a night shift, I may not see it again until an hour after my shift finishes the next morning. Plus there is no way I can replenish along the way.
After a brief handover with Claire, Tony and I got into the service’s big black 4x4. We both laughed at the Green Flashing lights left on the dashboard by the day shift. In my opinion they are a hindrance more than anything else. I’m not sure many road users know what they are anymore. Plus, as I said before, we are not an emergency service so I do not see why we should use them. As the driver, my first duty is to my passengers and other road users. I drive as quickly as it is possible to do so safely and within the realms of the law. In emergency call situations, give me something bright, noisy with blue flashing lights.
The patient’s address was less then 10 minutes away, giving me ample time to pass on the details gleamed from my terminal earlier (I had left the print out in my bag).
“OK Tony, we are going to an 81 year old female. Relatives phoned 3.5 hours ago saying she was displaying strange behaviour and mood disturbances. This is new and has worsened throughout the day. She has been complaining of constipation for a week or so. No tenderness or pain. The Patient does not want to see a Doctor and is refusing to go to the hospital. Past Medical History shows Renal Cancer 10 years ago, treated successfully.”
We pulled up outside a large, well maintained house. There were no lights on. I rang the doorbell once and heard the muffled bark of a retriever somewhere inside. A faint glow of light, then the door opened a couple of moments later.
A small woman in her early 60’s stood in the door way. She looked tired and sad, her face flushed. “Ah, you’re here. I am afraid you may have had a wasted journey, she’s settled now”.
We followed her through an immaculate house to the back room, making our introductions along the way. Maggie opened a glass panelled door and we were hit by a wall of heat. A gas fire, on 3 bars, with a small lamp in the corner providing little light.
In the middle of the room was a large bed, with a nimbus air mattress. A small frail figure in the bed, sheets covering her below the waist. Even in the dim light I could tell that once her hair had been flame red, although now it had lost its luminous shine and was faded. Something was wrong.
Through the next glass door was the kitchen, imprisoning a friendly tail wagging retriever. A woof brought my senses back.
“Can we have the lights on Maggie?” I asked.
A click of a switch and I was calling Tony over to me. “Mary, Mary?” No response. I tried a simple shoulder shake. Nothing. Her eyes were open and fixed. I ran my finger over the eyelashes of one eye, then the other. Nothing. Her breathing was shallow and pretty fast. I estimated about 40 guppy breaths per minute.
“GCS 3” I said to Tony. “What’s your relationship to Mary Maggie?” I asked as I retrieved a pulse-oximeter and a digital blood pressure reader from my bag. I applied a sensor to Mary’s finger, gently telling her what I was doing and why, before applying the cuff to her right arm. I fished my mobile phone from my pocket and dialled 999. “Ambulance please”.
“I’ve lived with Mary and her husband for over 40 years. No please don’t send her to hospital, she doesn’t want to go. She wants to stay here, please don’t send her.”
“Sats 90%, Pulse 101. BP 58/38. Temp 38.1” I said to Tony, who was now listening to Mary’s chest.
“Maggie that choice may be out of our hands. We will do all we can, but right now I need to know more about Mary.” I spotted some notes on the welsh dresser. “Are those her medical notes?”
“No, they’re the home helps notes. They don’t fill them in anymore. Erm, Mary had Renal Cancer 10 years ago. She had a tumour removed. Then, erm 14 months ago, she complained of pain in her legs. They found that the cancer had come back and got in her bones. It had left holes in her bones. They gave her 2-3 months. That time passed almost a year ago”.
“OK Maggie, where is Mary’s palliative care card. Does she have a DNAR?” I said.
“A what, no she has nothing like that”.
There was a ring of the doorbell, the ambulance FRU was fast! I left Tony explaining to Maggie that Mary was in a coma, whilst I went to fill in the Paramedic.
“So what do you want to do?” asked Andy the Paramedic. “Let’s get a bag of saline up and see if we can raise her BP. If we’re really lucky we might get a response from her.” said Tony. We all knew it was unlikely, but we we’re buying sometime.
Maggie was off phoning Mary’s only living blood relative, a niece who had left the house about 15 minutes before we arrived.
Andy got an update from control, telling us that the crew would take 20 minutes to get to us. I phoned base, getting Claire to check our Palliative Care Records for Mary’s name. If she was registered, she would be on our records. There was nothing. I spoke to our Doctor and explained the circumstances, but I was told we would have to bring her to A& E.
“Please inform the A&E team then Doc. There’s no way this woman should be left on an Ambulance Stretcher in a corridor.” I know there is a nice little side-room, away from all the action, ideal for a patient like Mary. I was hoping that this room would be made available for Mary.
Even with 15lpm Oxygen and a non-rebreather mask, I could see Mary’s lips were starting to become cyanosed. Blue tracks were also starting to appear on her forehead.
I took Maggie into the kitchen and sat her down. She was confused and flustered.
“Her GP retired a year ago. She’s only seen her new one once, I think. All the rest has been done over the phone. She doesn’t like hospitals or Doctors. Especially since Ted died”.
I knew from the call to base that Mary’s last consultation was 10 months ago. She had recently been prescribed codeine over the phone, followed by lactulose a week or so later. The GP should have ensured that Mary was registered with the Palliative Care Team. A good GP would also have made sure a DNAR was in place.
“Ted was Mary’s husband?” I asked.
Maggie told me that Ted had started to show the signs of dementia 6 months ago. One day, he slipped on the stairs which resulted in a broken hip.
“He got whisked off in an ambulance. When they scanned him, they found a mass on his liver. There wasn’t anything the doctors could do and he died a few weeks later. Mary didn’t get to say goodbye.” The tears gently streamed down Maggie’s face. A friendly face plopped down on her lap as Holly the retriever gave her the comfort that only a dog can.
Holly’s head lifted and faced the door, and then there was a knock. I went to answer it.
Mary’s niece Sarah, and her husband John. I led them past Mary as Tony and Andy leant over her still form, and into the kitchen. I slowly and carefully explained the situation.
“She can’t go to hospital, she doesn’t want to. Doesn’t her word count for anything?” sobbed Sarah.
I explained that without the paperwork, we needed to hear that from Mary herself. We were trying everything we could to give her the opportunity to tell us to go, but the crew would be here soon and it was more than likely that we would be on our way within a few minutes of them arriving.
With that, the doorbell rang. I met the crew and held them back outside whilst I filled them in.
The people involved were first rate that night. We all worked as a team. Without discussing it, we all knew we wanted the same outcome. For a poorly woman, once proud and strong, to be offered the dignity to die in the place she had chosen. With the people that loved her and who she loved around her.
The crew took a very detailed handover, first from Andy then from Tony. Then they repeated Mary’s obs, very carefully.
“Get me base on the phone, I want to speak with the Doc.” said Tony.
I got the Base Doctor on the phone and handed it to Tony, who disappeared into another room.
The crew had got the 12-lead on, and hit record trace. 4 traces were probably excessive, but we were happy to spend a little more time. Everyone in the room was now speaking to Mary, as though she was fully conscious.
I always talk to the patient, even the deceased. I don’t know why really, but I describe every little detail. Perhaps it helps me to remember what I am doing and what I have done. Perhaps it is out respect, perhaps I just like talking. Watching four other people do the same thing was heart warming.
Tony came through and handed the phone, asking me to bring the relatives in.
“I am going to ask for everyone’s opinion in the room, does Mary need to go to A&E?” he said.
One by one he asked everybody in the room. He noted their answer. He even asked Mary, bless him.
“We are all agreed, he said. Mary does not need to go to hospital. Are you all prepared to sign my notes to that affect?” he asked. Seven heads nodded.
“Then, our Doctor and the A&E Consultant are happy for Mary to stay at home.” Tony said sitting down at the table and starting to handwrite his notes. He looked over at me “Perhaps we can ease any pain she may have? Diamorph Syringe Driver, asap”. I knew what he meant.
The paramedics stood themselves down, handing Sarah a copy of their PRF to sign.
The facts of the case were simple. We had an 81 year old woman with a GCS of 3. There was no DNAR in place. If her heart stopped beating, or if she stopped breathing, we were obliged to start CPR on her. She would have been dragged off her air mattress and onto the floor. Her chest would have been exposed to all in the room and she would have most likely suffered broken ribs from the chest compressions, especially with brittle bones from the effects of the cancer. She would should have been transported to A&E, under blue lights. If she had not died en-route, she would have done in Resus at the hospital. It would have been undignified and traumatic for Mary and her loved ones.
We were definitely not going to do that now. The consequence was that all of our registrations were on the line.
This was new for me, but it felt like the right choice had been made. The paramedics said goodbye to Mary, each gently holding her hand, before they were gone to help those who could be helped. Who wanted to be helped.
I got onto the phone, arranging for a prescription for Diamporphine and a Syringe driver to be picked up from our base by a Rapid Response Nursing Team.
I sat in the kitchen with the family whilst Tony wrote up his notes. Normally we do the writing up on the computer back at base. This job would be different.
We talked about Mary and Ted. Their working lives, their love of music. I noticed a couple of prints on the walls. They were Wainright sketches of the Lake District.
Mary & Ted had not been blessed with children of their own. I think it would be safe to say that Maggie had become their surrogate. She only had Mary and Holly. She had spent the majority of her life caring for and being cared for by Mary & Ted. She looked broken.
“It’s all happened so quickly. A few hours ago, we shared a meal with her and she was chatting to me. Although she was doing the strange things that Ted used to do. She kept on trying to give me things that weren’t there. And she was mumbling to Ted”. Maggie said quietly, disbelief in her voice.
“Was there anything I could have done? I don’t understand.” she sobbed. I assured her that there was nothing that she could have done.
When I had first entered the room, Mary’s head was slumped to the left on the pillow. Although there was not much tone in her facial muscles, it was obvious there was none on her left. Her left iris, not pupil, looked like it was leaking onto her bottom eyelid. Both pupils were fixed, so I could not detect any difference between them. I would guess there had been some sort of massive CVA or stroke. I said nothing to the family about this, but Tony confirmed that he thought this too.
I am not an overtly religious man. I have my own beliefs, a version of faith, which I choose to keep to myself. I am not against church, or organised religion. In fact, after being dragged to church as a child, I will occasionally go of my own volition now. There are not many places left without malice. A church can be a sanctuary when I want to think and I cannot get up to my beloved Dales. Also, everyone seems so happy to see someone under 40 using the building for quiet contemplation. (If there is a bouncer at Heavens gates, at least my name might be on the guest list?)
It was obvious that Mary had been very devout Christian, up until she could no longer leave the house to go to church. After Ted had died, she stopped the Vicar from visiting the house.
I wonder, in hindsight, whether after Ted’s passing she had decided to see one more Christmas. One more New Year, before simply slipping away to be reunited with Ted.
I explained to the family exactly what would happen next and what they could expect. I then phone the actual nurses who would be bringing the syringe driver and I gave them the most detailed handover I have ever given.
A neighbour appeared at the door, to pick up Holly and take her out of the way. Maggie had phoned the neighbour earlier. I suggested that if it was alright with the neighbour, perhaps she might stay for the next couple of hours. The neighbour happily started making tea and sandwiches.
Mary was no longer on Oxygen. Peripherally she was cold and her resps were slowing. She was shutting down. Her eyes were glazing over. “I’m sorry for all the fuss Mary. I hope that we didn’t disturb you too much. Rest now.” I said to her as I cleared away the evidence of our visit. I left the cannula in her left arm, but removed the empty bag and giving set. I placed both arms beneath the sheets, bring it up to cover her shoulders.
Taking the equipment to the car, John and Sarah followed me out. “Doc, how long do you think she’s got?” John asked.
I smiled. “The nurses will be here with the syringe driver within the hour. I don’t think it will be long though, that’s why I asked the neighbour to stay. Mary might surprise us, she certainly sounds like she’s a strong willed lady. But, truly, I don’t think it will be long. Also, we’re not Doctors. I’m much too good looking and intelligent to be a Doctor”.
“No, you’re all stars. You’ve gone out of your way to do what was right for Aunty. We will always be grateful.” said Sarah hugging me.
Tony and I said our goodbyes. “Look after Maggie” I said to Sarah. Then we left the family to spend some precious moments to say goodbye to a loved woman, in the comfort of her own home. In the place she wanted to be.
There was a list of jobs waiting for us when we got back to the car. The rest of the night would see us out on the road until 7am.
The rapid response nurses took an hour to get to Mary with the syringe driver. Although they sited the needle, Mary never received a dose of the diamorphine. She passed away peacefully with her loved ones around her.
Eighty minutes after leaving Mary’s home, we received the call to verify her death. Of course Tony and I made sure we were there for her and her family.
I had called the Police en-route and given the Coroners Constable a background before he arrived.
The Police Constable was a wonderful help. He witnessed our verification. He checked our records from the earlier visit and he made sure the Tea and Sandwiches were passed around.
He told the family that the Coroner could take a dim view on the fact that Mary had not been taken to Hospital. He made sure they were aware of the implications. He had to do his job of course. I am so glad that he did it with compassion and sensitivity. Like everyone that night.
I spoke with a Chaplain a few days later and I mentioned some of the details of this job. I was directed to a report called Care and Compassion? It is available at http://www.ombudsman.org.uk/care-and-compassion and it is a report of the Health Service Ombudsman on ten investigations into NHS care of older people. If you work in Healthcare, please do me a favour. Read this report.
