CG125 Podcast with Advanced nurse practitioner, Helen Hurst. Proving patients who present late with information, support and choices.
Advanced nurse practitioner, Helen Hurst, discusses how to provide patients who present late with the correct information, support and choices.
This podcast was added on 27 Jul 2011
Interviewer: Hello and welcome to the NICE podcast about the NICE clinical guideline “Peritoneal Dialysis”. This podcast will focus on how to ensure that the correct information, support and choices are provided to patients who have stage 5 chronic kidney disease and have presented late or have started dialysis treatment urgently. I am Alexa Biesty; Implementation lead for this guideline and with me is advanced nurse practitioner Helen Hurst from the Manchester Royal Infirmary.
Q1 Interviewer: Could you please start by explaining why it is important to provide information, support and choices to patients who have presented late or have started dialysis treatment urgently?
HH: Ok, thanks Alexa. I think first of all this group of patients traditionally have come into hospital and have started dialysis quite quickly and therefore have missed out on the opportunity of getting information, support and choices. Often these patients who come into hospital requiring dialysis to start quickly, predominantly end up on haemodialysis and once they have started treatment they do not gain access to the education and support which they would have got earlier on in their disease, therefore they are kind of a forgotten group. Once they have started dialysis we may forget about them and presume they are happy that they are on the right treatment or their treatment of choice.
I think the other reason it is important to provide the same information is that they should have access to the same information, as this is still a lifelong treatment, this is a major turning point in their lives and we should be making sure that they have made an informed decision. Now often they can be quite ill and not be in the right frame of mind to make these major decisions, but we should still somehow access them and in order to do that you have got to have quite a flexible approach to your service.
I think probably most clinicians would agree that they have concerns that this group do miss out quite a lot, because we know that we have invested a lot of time and energy into the patients in the earlier stages of CKD; the idea being that we give them the education and support so that they can make an informed decision about which dialysis they want to go on and obviously those that come into hospital quite quickly do miss out on that. Often they do not get to meet the teams that deliver that information and support and like I said they will end up on a treatment to go out of hospital on and possibly they have never actually heard about any of the other dialysis options.
Q2 Interviewer: And what are the challenges to providing this support to this group of patients and how may we overcome these?
HH: Ok, well I think there are two parts to that. I think that the challenge in particular is for the patient. Obviously this group of patients have come into hospital and for one reason and another have suddenly found out that they have a kidney problem. Now they come into hospital needing to start dialysis quite quickly and this is a major shock, so the challenges are that you’ve got here in front of you somebody that is quite shocked, quite poorly, they may be feeling quite ill, they may be bombarded with lots of things going on: lots of interventions and treatments, and so to go to them and give them information about dialysis options and expect them to make a decision is a big ask. So it really does have to be individualised and I think that is where the second part of the challenge is; having a dedicated team so when a patient comes into hospital you know within 24 hours someone is able to go and see that patient. It may be that the initial meeting with that patient isn’t necessarily to talk about dialysis options, it is to introduce that team member as somebody whose there for them to talk to and someone that they will be able to talk to about what is actually happening to them at that time and I think having that flexible approach is really quite important.
We say individualised approach to patient care for all patients and it is probably more important in this group in particular. It is important to meet the family when patients are in ward environments, you want to meet the family members, we want to find out a lot of information about that particular patient and then it is about starting that process of education and support that you would give to patients earlier in their stage of kidney disease.
You may go and see a patient that has already started on dialysis, so it may be that they came in so unwell that they had to start on dialysis within hours. You still need to access them and start that process of education and do it very slowly, particularly if they are feeling very ill; you might only be able to sit with them for 10 minutes, so that is where the team and the skills of the team come in when assessing that patient.
Q3 Interviewer: What should this information and support include to ensure that these patients can make an informed decision?
HH: Well I think to start with the guideline is very clear about the types of information and support we should provide. That is written and oral information, and I think these types of information are the same for this group. What is different about this group of patients is the timely way in which you give the information. So we know that people make decisions at different times and having to be with someone 12 months before they start on dialysis gives you that opportunity to look at how they make decisions and letting them have the time to do it. If you are asked to see a patient who has started dialysis within 2 days of being admitted, you haven’t got the advantage of that timely way which again brings us back to being individualised and giving people the time just to take in what’s going on around them. Is it right that people should be making decisions about their future treatment within those first few days of coming into hospital? I think the secret perhaps is down to your model of care within hospital. If someone comes in to hospital and gets onto haemodialysis say within 2-3 days of admission and actually is deemed medically fit for discharge; it’s quite possible that they are the patients you miss out on because they get discharged into a haemodialysis facility and it’s how you access them because those patients then get lost to follow up and they don’t access the team.
So the timing can be a major challenge because you have just got to make sure that you are not rushing people but you also want to make sure that they understand that the treatment they are currently on does not mean it has to be the treatment that they go home on and because we know things like lifestyle are important. I think the expertise of the team in those first few days is finding out about that patient, finding out about their home life, their work life, their family, getting to know them in that way to then help them to look at the different options of dialysis and what would suit them best.
Q4 Interviewer: What changes in practice might those who care for patients with stage 5 chronic kidney disease need to make to ensure they implement this part of the guideline and provide the correct information, support and choices to patients who have presented late?
HH: Ok I think we have mentioned a few times about pre dialysis teams, I know this is a difficult one, but I think there is a general acceptance that you need a team and who that team is made up of generally speaking is nurses and obviously pre dialysis encompasses nurses, dieticians, social workers and medical staff. I think if you don’t have pre dialysis teams you need to consider who is going to deliver the information and support to this group of patients.
You need to have a pathway so that when somebody is admitted there is a system and that somebody can get to that patient fairly quickly. I think most services now do have pre dialysis nurses or CKD teams, they often have different names but their roles are around delivering education and information to patients particularly early on in their CKD and it is how those teams then face the challenge of patients with acute renal failure. So you are talking about a team approach and about the fact that everybody knows about this team. And it can be done as it is done in many centres- these patients do get seen it is a huge challenge but I think if you don’t have these patients being seen currently it is something that needs to happen.
Q5 Interviewer: Ok and are there any other considerations or important factors which should be taken into account when providing information and support to this group of patients?
HH: Well I think we have discussed in detail about the fact that this group of patients are different. They can be a lot sicker, they can be quite ill and so their needs are different and we have to remember that when we are delivering information because they may not take on board anything you say to them which is why you need an individualised approach and why you need perhaps the same team coming back to them following them up.
Ok so we’ve talked about pre dialysis teams and the importance of them and having a pathway and a flexible approach there so that people access these patients quickly. I think that there is another angle to changes in practice specifically around the treatment or the models of care that you have for patients with acute renal failure.
Most centres, although that is changing, when patients come into hospital they have a temporary line inserted and go onto haemodialysis. We have seen in some centres the use of PD in the acute setting where PD catheters are inserted in the procedures room by medical staff and then they can be used immediately for this group of patients. So I think in terms of your own individual service it’s about looking at; are there different ways in which you can manage this group of patients? So instead of just putting the haemodialysis line in, which will always have a place because there are always patients that need dialysis very very quickly, but is there scope for patients where you could put a PD catheter in and still deliver the dialysis in the same way? So you are still treating that patient who needs dialysis quickly and they still have the same access to the education and support but you’ve got a patient that hasn’t had temporary haemodialysis access in, they have got a PD tube in so they can see what it’s like. This may reverse this trend where we see patients go home on haemodialysis because that’s the only therapy they know. I think that’s an important consideration and I think we are seeing it more and more, there are more centres doing medical insertions successfully and when you’ve got skilled, trained nephrologists or nurses delivering this type of service it offers you more scope and flexibility to do acute PD.
Interviewer: Ok, thank you Helen. We hope that you will find the information in this podcast useful in helping you implement this NICE clinical guideline. For more information about the NICE clinical guideline on peritoneal dialysis, including the NICE implementation tools which can all be adapted for local use please visit our website www.nice.org.uk/cg125
This resource should be used alongside the published guidance. The information does not supersede or replace the guidance itself.
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This page was last updated: 19 September 2012