Setting clear expectations early on is an important step in the dialysis journey

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Stephen Hohmann

Stephen Hohmann (Texas Vascular Associates, Dallas, USA) recently sat down with Renal Interventions to discuss a number of key considerations along the dialysis journey, from listening to patients’ perspectives and managing their expectations, to access strategy planning, and the ever-increasing relevance of peritoneal dialysis (PD).

Could you outline some of the overriding themes, in terms of patient feedback, that you observe in your practice?

No one wants to be on dialysis, obviously, and when patients first come to see you—particularly if they have not had any previous experience with it—it is really overwhelming. They are thinking about how their life is going to change, and oftentimes as you are talking to them about potential options it can be difficult for them to process things. I think acknowledging that at first is always very helpful to the patient.

My main theme when talking to patients is setting expectations; making sure they understand that dialysis access is not like any other surgery we do. With most surgeries, people expect to see the surgeon or interventionist one time and then be done with them—but this is rarely the case in dialysis. So, it is about conveying that you are not just doing a procedure, but you are actually starting a relationship and a journey with them to maintain their access until they do not need it anymore. The most common piece of feedback I get is that they initially thought access surgery would be a one-time thing, and that has really shaped the way I speak to patients and their families.

Setting that expectation early on is key. It is overwhelming for most patients when they hear “you need to start on dialysis”—it is akin to finding out you have cancer. After hearing those words, it is hard to process anything else, and I think taking some time to reiterate similar themes, and giving a general overview of what to expect initially rather than getting into too much specific detail, is important.

Why are the early stages in a dialysis patient’s journey so important?

The initial discussion is a really key moment in the process, because patients may get it into their mind that this is just a single stop and they will never need to get anything else done to their access. And then, in the future, once they require an intervention or encounter problems, there is a huge sense of let-down and failure. Repeated complications and reinterventions can also lead to ‘access fatigue’. I think that, early on, we need to try to understand certain things: What are the patient’s goals? What are they most afraid of when it comes to vascular access, and dialysis more generally?

From there, we can help them make decisions. I always say it is the patient’s choice, which it is, but we also have a responsibility to guide them and give them information to support that choice. And the other thing I tell patients is that we can always switch; if you choose PD and it turns out not to be right for you, we can try haemodialysis, or vice versa. It is not a finite decision—we can still modify it and, as such, they remain in control of their health. Most of the time, patients are relieved to hear that the choice they make is not final.

What is the split between the major access types—fistulas, grafts and catheters—at your centre?

I would say that, generally, in Dallas, we have more grafts than in most places—possibly because other patient populations have veins that are better suited to fistulas. The proportion of catheters varies from centre to centre, and probably ranges from 30% to 5–10% in some places. Fistulas fall in the 40–50% range, while grafts make up the remainder.

I think the best thing that has happened for us recently is the latest Kidney Disease Outcomes Quality Initiative (KDOQI) guideline update, which stressed ‘the right access, for the right patient, at the right time’. And I use that all the time with the patient, and I explain that there are three access types and each has its advantages and disadvantages. ‘Anything other than a fistula is a failure’ or ‘not having a catheter in the chest is a success’; it is really about changing that narrative, and kudos to the KDOQI guideline writers for giving us that freedom.

The most common piece of feedback I get is that they initially thought access surgery would be a one-time thing, and that has really shaped the way I speak to patients and their families.

Another thing I have seen recently is a definite uptrend in PD. There is a clear increase in the number of patients wanting to pursue that—particularly during and post-COVID. A lot of people are very anxious to not have to go in centre and be around other patients, and PD gives them the freedom to avoid those situations by dialysing at home. The effect of the pandemic as well as governmental influences has driven more people towards home therapies, which is good, because we always say that “you dialyse to live, you do not live to dialyse”. Yes, it is still a clear interruption to their life, but to a lesser extent than having to go to the dialysis centre three times a week.

In light of recent shifts away from ‘fistula first’, what are your thoughts on grafts and catheters as more long-term options?

A graft can be a good option for a long time in the right patient population—like I said, I think it is really about resetting our focus and also trying to get our patients accesses before they need them. In the USA, 80% of people initiate dialysis with a catheter and our focus should be on driving that number down. If that means using more grafts, then fine—grafts can be very good and they can work for a long time. I think the idea that it is a ‘lesser than’ access is the wrong frame of mind to be in, as they do carry plenty of advantages.

I think catheters have a role to play too, and I think this is where the discussion comes back to KDOQI and the importance of assessing the individual patient. Life expectancy, for example, is one of the more difficult elements for us to predict with any real certainty, but if somebody has an end-stage malignancy and their goal is to dialyse for a specific length of time, catheters should be considered. They are also a good option in people with severe peripheral vascular disease, or those who have had multiple abdominal surgeries and cannot undergo PD.

However, the role of catheters should be limited and we should be careful regarding patient selection because there is clear evidence that, statistically, they encounter more problems than other accesses. I would love to see that 80% rate of patients starting with a catheter flipped on its head, and brought down to 20% or less. We really need to take a close look at that population and get those numbers as low as possible.

How do you attempt to balance your own knowledge and expertise with patient preferences?

I think that is where patient education is vital. It is also about asking the patient what they want rather than telling them what we are going to do—and, sometimes, they do not know, which is okay too. Either way, it is about taking their feelings on board, assessing all the options, and going back to them with an optimal access strategy based on what they have told you.

Being open with the patient is key too. Some people may want to try PD despite having had previous abdominal surgeries, and it may be a case of doing a diagnostic laparoscopy to see if it is possible. Even if it turns out PD will not be possible, patients do tend to be appreciative of these attempts to explore their preferred option. The same goes for patients who want a fistula—we can try, but if it is unsuccessful, they may need a graft instead. I would say that, once you offer that level of education regarding each option and lay out the reasoning, most patients are more receptive.

I also feel that one thing we in the surgical world can probably improve on is our understanding of cosmesis. For the patient, not only are they going to be on dialysis, but they are also going to have a visible access in their arm that tells the world there is something wrong with them. That is a big concern for patients and it is something we need to be empathetic about. I always say ‘function first’ because, if it does not work, nothing else matters, but the form is also relevant, and I think we need to appreciate that the way patients look is important to them and should therefore play a role too.

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