Posted by: medicblog999 | May 9, 2010

Its not all about saving lives – Reposted.

Since I have had such an amazing response from my recent post on caring for the family of the dead or dying, I remembered this other post I wrote last year. I know many of you may have already read it, but I have had one or two new readers since then and thought it fitted well with recent discussions on here, so I thought I would repost it for those who havent read it.

For those who have read it before, there will be new stories up in the next couple of days……

comfort

This is a bit of a long one, but it needs to be to do it justice.

Some time ago, I attended and emergency for a 73 year old man ‘dehydrated’.

That’s all the information that was available to me, so I thought that it wouldn’t be too much of a difficult thing to sort out. Off to the patient in my rapid response car.

When I arrived on scene, I was shown into the property by a lady who looked very concerned and a little upset. I walked into an immaculate bed room, to find Joe in his bed just in front of the main bay window. He was a waif of a man, and it was immediately apparent that he wasn’t a well chap at all. It was obvious by all of the medical paraphernalia around the room and his bed that he had been in this condition or at least a similar condition for some time.

I quickly gained a history from his wife Susan, who informed me that Joe had 3 strokes 4 years ago which left him bed bound and virtually unable to communicate. On top of all of that, he was diagnosed with Alzheimer’s just prior to the stroke, which had apparently progressed over the subsequent years too. He was fully cared for by his dotting family and a team of carers that attended to him 3 times a day. He suddenly deteriorated 2 weeks ago and had been treat at home by the Gp for an acute chest infection, which appears to have resolved somewhat, although I could still here a little rattle which sounded more like secretions/fluids in his upper airway.

Susan told me that for the past 3 days, they have been unable to get Joe to take any fluids orally and whatever they did manage to get into him, he seemed to have difficulty swallowing.

As I was taking an initial set of observations I felt as though I had to ask a very pertinent question. One which can sometimes be difficult to ask, but what needs to said at times.

“Does Joe have an advanced directive note, a living will, or a do not resuscitate order?”

Susan just looked blankly at me and asked me what I meant.

“Have there ever been any discussions between you and the GP regarding what would happen if Joe became very unwell at any time, and what options for treatment he would have?”

Susan: “No, nothing like that, although when he had his strokes, the hospital said that he may not have a long time to live and there may be a point where he suddenly gets very ill very quickly……..Ohhhh…Do you think that is what has happened now?”

“I don’t know right know, but I can tell that he is very unwell at the moment”

As I looked at Joe, his eyes were half open and his pupils looked glassy, there didn’t seem any life behind his sunken eyes. His breathing was fast and shallow. His observations were surprisingly good considering, but he was hypoxic on air.

I did a quick 12 lead ECG and tested his blood sugar, and they both checked out ok too.

After further history taking, it became apparent that they had visits from GPs twice during this week, the last one being when Joe was in the same sort of condition as I found him in that night. It was obvious to me that the GP didn’t want to treat aggressively, and to be honest looking at Joe, I can understand why.

However, without no DNR or living will, my hands are tied in many ways.

I have had previous palliative care experience whilst I was a nurse in cancer care. I firmly believe in trying to provide a peaceful death, with your loved ones, when death is inevitable and imminent. I know I am not a doctor, but looking at Joe, it seemed apparent that he was in a pre-terminal state.

As much as I wanted to give the family support and leave him with them, I couldn’t, and to be honest, without having any oral intake for 2/3 days and having no I.V access or I.V fluids, I was a little concerned with the discomfort he may have had through dehydration.

“There isn’t a great deal that we can do here I’m afraid, we will have to run Joe up to the hospital so that they can take a look at him and see what they can do to help”

Susan: “Oh no, we don’t want him to go to hospital. That’s the last thing we want. We have kept him home for the last four years and he isn’t going up there now. Can’t you just put a drip up for him so that he can get some fluid?”

“I’m sorry, I can’t. I mean, I could, but I wouldn’t be able to leave him at home with it running. He would have to go to hospital”

I had a so many thoughts running through my head at that time that I wanted to take a moment and get it clear what I wanted to do. This was one of those situations which I find both challenging and rewarding at the same time. It all comes under ‘End of Life’ care and issues and it is something that we don’t really have training in or guidelines about. They are coming though, there is a big national push to improve the quality of care for patients such as Joe, networks are being put in place and appropriately trained staff that we can refer onto, who will come out and continue with palliation of the patients symptoms and make them as comfortable as possible.

But that isn’t here yet.

I wanted to make sure I was happy with what I was going to try and do, and wanted a minute away from the family to think it through.

“I’m just going to pop back out to the car, to get some paperwork to fill in, then we will talk about what we are going to do, ok?”

I took a couple of minutes than returned to the house and asked Susan and her son, who had arrived, if I could have a chat with them downstairs.

I felt uncomfortable with having this conversation with them in front of Joe. I know that I was told that he had no meaningful communication abilities and the family believed that his Alzheimer’s had progressed to the point where he wasn’t aware of his surroundings or who was there, however, I believe that even when unconscious, hearing is still present to some degree. I would hate to think that Joe was listening to our conversation and not be able to interject (I know that’s silly, he was virtually fully unconscious, but that’s just the way I feel).

“Right then, we need to think about what we are going to do here, but I feel that you need to know the implications of what you are asking me to do, or not do. Is it okay if I talk openly so that we can cover what needs to be understood?”

Susan: “Yes, ok”

“From everything that I can see with Joe, he appears very sick indeed. I would class him as being in a pre-terminal condition at this point. What that means is that without any medical intervention, and possibly even with medical intervention, he may not recover from this bout if illness. Because there is no DNR order, or living will, I have to offer to transport him to hospital, but I am also aware of your wishes and I am sure that they are in the best interests of Joe too. It appears that his quality of life is very poor at the moment, although he is surrounded by his loving family. You have cared for him amazingly, the fact that he has been well at home for 4 years is testament to how well you and the carers have been looking after him.

The only option I have, if you really don’t want him to go to hospital, is to have a talk with his GP and see what they are happy with doing.

I need to be sure though that you understand what this decision is likely to result in though……

I know it’s hard, but if no medical treatment is started, it is highly likely that Joe will die at some point in the near future. You also need to be aware that there may be a chance that if he had aggressive treatment, he may return back to the condition he was at before he got more poorly this week.

There is also the possibility that even if we do take Joe to hospital, they may well not aggressively treat him either. He would however, get a drip placed in his arm and he would get some fluid”

……

……

Susan: “I don’t want him to go to hospital, really I don’t. If he is going to die, I want him to die with me at home. We have been married for 52 years and we have lived in this house the whole time…….I don’t want you to take him to hospital”

“Ok. I`ll give the GP a ring and see what he says”

I managed to get through to the GP surgery, but it had just closed for the day, so the calls get forwarded to an out of hours GP service. After giving the call taker a brief history, the GP rang me back 10 minutes later to discuss the case.

I gave him a full handover and informed him of my impressions and the family’s wishes. Although he agreed that the hospital would more than likely not aggressively treat Joe, he said that there was nothing that he could do in the community for him, so he would have to go to hospital so that he could have some I.V fluids.

‘What about some sub cut fluids Doc? (fluids which are infused just under the skin at a slow rate, which are absorbed into the blood stream. Can we not get the palliative care team involved, or the district nurses?’

The doctor agreed to ring the out of hour district nursing team to discuss it with them.

10 minutes later, the phone rang and he informed me that they would be coming out to see Joe and Susan in the next two hours and would put fluids up on him via a sub cut cannula too.

Great…Result!

I hung up and told Susan, what was going to happen.

Her reaction was one that will stay with me for a while to come. You could see the relief in her eyes with him not going to hospital, but you could also see the sadness that she had just effectively agreed to let her husband die.

I cannot imagine what that must be like; I hope I never have to make that decision.

I completed the rest of the forms and wrote a hand written note for the district nursing team in addition to my patient report form. I wanted them to know that if they arrived and didn’t agree with what I had arranged or they felt that Joe should go to hospital, and they could persuade the family to let him go to hospital, that they would just contact ambulance control and they could send either us or another vehicle out again.

I left all the paperwork with Susan to hand to the nurses and went to leave. I glanced at the clock…I had been on scene over an hour, but it had truly been worth it. Susan and her son thanked me for what I had done and the understanding that I had showed.

I put my bag down and shook Joe’s son’s hand and then gave Susan a hug.

“Even though this has all been arranged, if you need anything, you can always ring us back and we will come and check on Joe, but you need to talk to the nurses about the DNR ok?”

I got back into the car and had a couple of minutes before I punched in clear. There was no trauma, no death, no high adrenaline, but I felt drained.

As I said in the title, it’s not always about saving lives; it’s sometimes about letting them go too.

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Responses

  1. I have found that the calls that are emotional are the most draining. Had a call recently where the husband was beyond our help. I was the only one to go up to the wife after the determination was made that our efforts were futile. I stayed with her while she contacted her family. Her neighbor had come over and was sitting with her when I felt it was ok for me to leave. All said, I was with her for about 15 minutes. By the time I made it back to the truck, I felt like I had just worked the biggest mega-trauma-code of my career. I was whooped. So, yes, I know that feeling all too well.

  2. As I said on my own blog, as a CFR I'd like to get some training on what to say and what not o when presented with an obviously (to me) dead patient. I'm talking about when rigor has started to set in.A short while ago, I had three of these within about 2-3 weeks. I'm not going to try to resuscitate someone who is in rigor, even if only part of the body is. However, and rightly, I can't pronounce them dead.Sometimes I can be waiting for 10 minutes for a professional to arrive, if things are busy. That's a long time to avoid talking about the body in the bedroom.What do I say to a relly who has called us to do something? In their heart of hearts, they probably know that their loved one is dead – but they want to hear it from a bloke in a green suit, not one in jeans & a (non-matching) shirt who has just broken off from preparing dinner.Obviously our unit needs to talk to the trust or to SJA, but a bit of advice would be really good.

  3. Thanks for reposting this, I appreciate how hard it must have been to deal with but I appreciate what you did and your sharing it with me.

  4. […] For many, it’s not all about saving lives. (Medic 999) […]

  5. Thanks for reposting this, I appreciate how hard it must have been to deal with but I appreciate what you did and your sharing it with me.


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