Editors Note: In the past, Steve Quinlan has written on the blog about the unseen burden placed on patients doing peritoneal dialysis. You can read it here. In the next few paragraphs, he gives his thoughts after reviewing the ISPD 2020 recommendations. As you might see, they often focus upon practical aspects of implementation, but also on a true patient perspective. These are stream of consciousness reactions, so we have edited and interspersed with actual recommendations for clarity.
PD should be prescribed using shared decision-making with the aim being maintaining QoL, minimize symptom burden and ensuring high quality care.
The PD prescription should take into account the local country resources, the wishes and lifestyle considerations of people needing treatment, including those of their families/caregivers’, especially if providing assistance in their care.
A number of assessments should be used to help ensure the delivery of high-quality PD care.
Patient reported measures
Fluid status
Nutrition
Removal of toxins
Steve’s Reaction: On "At this meeting, it was proposed that there should be a change in terminology from ‘adequate’ dialysis to ‘goal-directed’ dialysis defined as ‘using shared decision-making between the patient and care team to establish realistic care goals that will allow the patient to meet his/her own life goals and allow the clinician to provide individualized, high quality dialysis care’."
This almost explicitly states one of the concerns that struck me immediately. They need to change terminology. This sounds great, but what about the actual practice? What about decades old biases or thought patterns for health care providers (HCPs)? If this is the true core of the guidelines, why not state: "At this meeting, it was proposed that there should be a change in methodology and approach...." Maybe this was a simple or unintentional oversight, I don't know. But in the end isn't that the problem I'm bringing up: oversight. Words matter.
Also, the recommendations state, "Given these changes in clinical emphasis, the Guideline Committee of the ISPD invited a group of globally representative nephrologists to compose new practice recommendations for prescribing high-quality, goal-directed PD"
Again, this sounds great. But *how* will this be carried out? If a hypothetical home modality unit has a budget of $100,000 (just making up an even number), how much new money is being added to that budget in order to address this new focus? Remember the recommendations indicate (esp. in children) a focus to meet "medical, mental health, social and financial needs of the individual child and family" etc.. So implicitly there seems to be a need for more social worker consults, in the very least. Who coordinates this? The renal nurse? So now they have to do even more work. In a large unit, there will almost have to be new hires for personnel to manage this, oversee, document, or just to manage paperwork. Where does this money come from? If no new money comes to units to truly promote this, it won't happen. Well, it may happen, but will it happen in anything more than a token kind of way?
If no new money is added to the budget, but a unit dedicates $$$ toward this to really make it work, what part(s) of their current resources is having the $$$ taken from. This is all hypothetical of course, worst case scenario situation, and from somebody who is ignorant of exactly how funding/expenditure works. But, this is something that needs to be thought of in transferring guidelines on paper to guidelines fully implemented and fully functioning to reach their full benefit in the real world.
On the recommendation that "PD can be prescribed in a variety of ways and should take into account local resources, the person’s wishes regarding lifestyle and the family’s/caregivers’ wishes if they are providing assistance" .
What if the caregiver is having burnout from the burden? What if the caregiver no longer wants to be a caregiver? What if the patient thinks they are an inadequate caregiver*? How is this addressed now? How do these guidelines change that? I'll take a guess. The patient/caregiver will continue to have to endure the situation while they are "encouraged" to manage or "re-educated/trained", potentially making the situation worse. To put it another way, an MD/nurse suffers from initial stages of burnout and is told to attend wellness education meetings 2/week at 7pm after work, and to read some mandatory computer modules on the subject. This doesn’t really fix the problem.
I am stating the worst case scenario, but examining extreme cases is how one finds holes or inadequacies in any policy or guideline. If the guidelines are stating that "family’s / caregivers’ wishes if they are providing assistance" are to be taken into account, a unit has to be prepared and equipped to deal with them. Will they?
On recommendation 3, "This should take into account assessment of symptoms, the impact of dialysis treatment prescription on life participation and psychosocial status. Appropriate adjustments in care should be made based on these assessments (practice point)."
What adjustments can and will be made? Does this include guilt/pressure free modality change? What about caregiver change? How quickly can this happen? How often? Will HCPs be resistant? Will this be openly discussed from the start, initiated by HCPs, or only if patient/caregiver brings it up when the situation is already bad enough *to* bring it up?
For some people who require dialysis and who are old, frail or have a poor prognosis, there may be a quality of life benefit from a reduced dialysis prescription to minimize the burden of treatment.
Steve’s reaction: This caught my eye, and I think is an important one, especially since it touches on patient and HCP needs vs. clinical outcomes.
Why emphasize old, frail, or poor prognosis? What if somebody has a great prognosis, but can't cope with the PD burden? Will the lessening of the treatment be a rigid wall the patient has to argue and beat their head against? I have seen this personally with people I know on hemodialysis, and when it was, it was very sheepishly brought up by a parent caregiver I knew in the hospital 30 yrs ago regarding PD. The former was a constant battle to the point where patient just started ending treatment early and eventually when they told the HCP they were only coming 2/week, the latter was immediately given a resounding "no" by MD, at which point the conversation was abruptly ended.
So again, with the implementation, how flexible are HCP willing to be? How easily will they bend to more patient wishes vs. being strictly guided by the best clinical outcomes? This is a tough issue that should lead to a lot open and honest discussions.
In low and lower middle-income countries, every effort should be made to conform to the framework of these statements, taking into account resource limitations.
Steve’s Reaction: Why limit this to countries or regions? What about on an individual patient basis? Canada is a high income region, but I have known low income families on PD and HD and in a lot of situations the treatment was made more burdensome due to their low incomes.
Approach to ‘Failure to Thrive’
Steve’s Reaction: ‘Failure to Thrive’. A lot of issues are contained in that short phrase. A very important issue, to me for sure, that can be very difficult to assess. I speak of this in a more general sense than the paper does as it pertains more to adequacy of treatment. But this is an important issue with home (or in-centre modalities as well) and it must encompass more than treatment adequacy.
If the guidelines are to be implemented as stated, i.e., with much more emphasis of patient input and wishes, then this has to be a primary concern. Questionnaires are great, asking the patient/caregiver is great. But it assumes one will get adequate answers, or even more fundamentally that the patient/caregiver tells the truth! Guilt and pressure from "failing" or not doing as is expected is a complex beast and many patients will tell white lies (or big ones!) to alleviate it.
Here's an example to illustrate from HD. As a note, I have dialyzed at 6 different units in three provinces, and on a dialysis cruise over 29 yrs. This example applied to patient at *all* of them.
Most blood work (BW) is done every 4-6 weeks, and patients are told in advance when BW is. I often wonder how many HCPs know that patients follow their diet strictly only the week or two before BW to "fake" a good reading and are not strict the rest of the time. It happens. A LOT. If there were a secret microphone in the patient waiting rooms HCPs would probably be shocked.
The question is why does this behaviour exist? Why would you not want to know the actual values and tailor your diet accordingly?
Because then they don't have to deal with the guilt/shame from poor bloodwork. Or accept that they were not able to adhere to the repeated instructions. Or have to accept the work needed to adhere to those instructions. Even if no guilt or shame is explicitly expressed toward them verbally by the nurse or the MD, it exists.
And this is only the BW, essentially, pertaining to the ability to adhere to diet. Think of the impact in having to admit to not being able to adhere, or cope, or manage your entire treatment modality, when it comes to PD!
I bold-faced lied about my treatment on PD.
Everyone thought all was well. The MD, the nurse, my caregiver, everyone. Until it wasn't. I was asked. I lied. I was given a questionnaire. I lied. I failed to thrive right in front of everyone. It's very much like drowning (personal experience); people don't splash around yelling "help! help!" and then lifeguards come running --- they slowly, and very quietly, sink beneath the surface until they are gone. It's only because lifeguards are *actively looking* for this that they can run over, grab you by the hair and pull you up above the surface. Are HCPs, intent on keeping the patient on the home modality, actively looking for the sinking patients?
Questionnaires and discussions are great, but it (may) require(s) more. Home visits? Social worker investigations? There may be infinite answers, but again looking at the extreme cases to test robustness, if these guidelines are going to truly be adopted, this is the kind of thing that in the least needs to be discussed and tentatively planned for.
Conclusion: Implementation
Steve’ Reaction: "It is not possible to embed an implementation plan into an international guideline as the process will vary from country to country depending on healthcare systems and resource availability."
Not every unit will be able to implement these ideas fully or completely for a myriad of reasons, regardless of intentions. But if the intent is to truly focus more on the patient, in particular their well being outside of adequacy, then hopefully all of the above will help.
Patient Perspective written by Steve Quinlan, who describes himself as:
My name is Steve and I am a 45 year old man with ESRD. I have been on dialysis for 29 years: 1 year on PD, 28 on HD. I have had three attempted transplants, with the first two in 1989 and 1991 rejecting almost immediately after a few weeks. My 3rd transplant occurred in September 2017. I'm a stay-at-home dad and teach martial arts.