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DECISION-MAKING PROCESS
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The responsible for making the decision to start RRT 26 RU (1.07%) |
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Reported assessments reflect a scenario where decision-making in clinical settings is predominantly driven by medical professionals, either individually or in consultation with the medical team, particularly in the case of residents: “But in the office, the decision is usually mine [physician]” (I4).
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That indicates a lack of emphasis on team participation or discussion. Notably, only three professionals acknowledged the importance of patient involvement: “Though I’ve never decided for any patient” (I25).
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“But, ultimately, the decision is always theirs [patient]” (I28).
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“It’s always a joint decision... it’s never just ours” (I56). These statements underscore a prevalent paternalistic approach within healthcare services.
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| Driving force behind decision-making 73 RU (3%) |
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Reports indicate that the decision-making process is primarily guided by clinical and laboratory parameters: “Yes, actually, from a medical standpoint, our assessments are pretty objective. There’s nothing subjective about it; we’ve already established criteria for that” (I27).
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“But it’s not just about hitting a certain number that automatically subjects a patient to dialysis. It’s more about the overall clinical context they’re in” (I4).
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“That magic clearance number below 10 for all patients and below 15 for children and diabetics isn’t always used” (I21).
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Social, economic, and treatment feasibility concerns, cognition and familial support, the stage of CKD, glomerular filtration rate (GFR) and its deterioration, age, the timing of onset, and how it is “coped with,” patient confidence, experiencing symptoms, and urgency were identified as factors requiring evaluation. Regarding peritoneal dialysis (PD) suitability, individuals with vascular access difficulties or significant cardiac conditions were noted.
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| Reasons/indications/symptoms for starting RRT 48 RU (1.97%) |
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The following criteria were outlined to guide decision-making: deterioration in clearance/drop in GFR (<10 or stage 5), loss of appetite and difficulty eating, nausea and vomiting, weight loss and muscle wasting, hypervolemia and edema, fatigue and tiredness, malnutrition, worsening sleep quality, itching, hypoalbuminemia, hyperkalemia, proteinuria, elevated parathyroid hormone levels or bone mineral disorders, uremic symptoms, hypertension, congestion, reduced urine output, signs of acidosis, anemia, and sarcopenia. These criteria can be categorized as either urgent or elective. It is important to note that patients exhibit varying tolerance to these changes, calling for individual assessment:
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“But he shouldn’t be entirely asymptomatic, nor should he be severely symptomatic... After considering the laboratory test results, you will determine that it’s time for the patient to initiate therapy” (I10).
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DECISION-MAKING PROCESS
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Shared decision-making 67 RU (2.75%) |
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When queried about the decision-making process, the majority of professionals clearly prioritize respecting the patient’s autonomy and emphasize the importance of their involvement: 19 indicated that it involved the medical professional and the patient directly, while 4 mentioned it was shared between professionals, patients, and family. A nutritionist and two psychologists noted their involvement in the decision-making process with the patient. Unfortunately, instances of disregard for patient autonomy were reported: six professionals stated that decisions were made solely between doctors (particularly between the resident and the preceptorship/staff); six decisions made in team discussions or meetings without considering patient participation; four mentioned decisions were made between the doctor and a family member, without mentioning the patient; and one professional reported making the decision on their own. “Typically, we are the ones to decide to initiate therapy, I usually do it in consultation with the staff, and then we inform the patient” (I43).
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There was a lack of acknowledgment of the full team’s involvement in this process, as noted by two professionals who were expected to participate: the doctor, nurse, psychologist, and patient. “And the doctor invites the multidisciplinary professional to contribute at a stage where the decision has already been made and the plan is already established, do you see?” (I15).
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| Can the patient choose the best RRT modality? 98 RU (4.03%) |
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49 professionals responded affirmatively, indicating that patients not only can but should have the right to participate in decision-making processes. Two professionals noted that it depends particularly on the patient’s sociocultural background, level of understanding, and guidance, as long as there are no formal medical or nursing contraindications to any therapy. Seven indicated that patient participation should be possible, but it is not a common practice in care settings: “It’s not that they can’t! It’s just not recommended most of the time [laughs]” (I31).
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“At times, patients might have a say. But often, they already have a clinical picture, you know?” (I35). Three professionals did not explicitly state whether patients are allowed to participate: “I believe they lack the understanding, you know, of these modalities” (I40).
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It’s important to highlight that guiding and fostering patient autonomy is the professional’s responsibility. Two professionals indicated that it is not the patient’s right to make the choice: “No. Most of them do hemodialysis; they don’t opt for it” (I45).
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| Professionals’ approach to patient choice. 25 RU (1.02%) |
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Outlines what treatment options are feasible (either due to clinical contraindications or space availability), while also respecting the patient’s choice regarding which therapy they would rather undergo, within the constraints, and avoids steering the patient towards any specific therapy. The patient can choose their preferred modality but cannot opt out of treatment altogether. In terms of respecting autonomy and its deprivation: “And we acknowledge their condition, as long as it aligns with medical rationale, you know? […] So, as long as the patient is alert and coherent, we do not force hemodialysis onto anyone who refuses it” (I55).
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“If the situation arises, say, during my shift [laughs], and I’m tasked with initiating dialysis for a patient, they’ll receive dialysis” (I4).
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DECISION-MAKING PROCESS
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Professional recommends RRT – for patients they deem eligible 20 RU (0.82%) |
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Professionals indicate that they often recommend modalities they believe to be the best, appropriate, or indicated for the patient: “We share our perspectives, you know? […] of course, we discuss what would optimize the patient’s well-being, including their quality of life” (I26).
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“We consistently advise them towards what we perceive to be the optimal course of action” (I28).
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“I try to suggest the most suitable technique, the most effective approach for the patient” (I47).
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“I also offer my insight, suggesting what I believe to be the most suitable method, and then convey that to them” (I59).
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“If a patient is eligible for PD, I typically recommend PD initially” (I13).
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“This way, there are two options, but I would still have to say, ‘Look, you have these options, but this one is more suitable, understand?’ […] Essentially, we steer the patient towards hemodialysis” (I24).
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“[If there are] challenges with peritoneal dialysis therapy, we don’t involve the patient in the decision-making; instead, we recommend hemodialysis” (I37).
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However, there is also recognition of a concern with this approach, a classic paternalistic tendency prevalent in professional practice: “We often hold onto the belief that we’ve made the right decision, see?” Like... I did the best I could, right?” (I49).
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| Family participation in decision-making 41 RU (1.68%) |
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The importance of family participation was mentioned: “Yes, when we reach this stage... often, we even have a family member present, you know? Whether it’s a son, daughter, father, mother, or sibling, in essence, someone close” (I63).
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“And they always want their family there. We consistently ask to involve a family member whenever patients have a low clearance. “Yeah... the guy is completely dependent; 40 years old, still... He already comes with his family, because it’s helpful to explain to the family together that we think it’s beneficial for the family to participate somewhat in this [process]...” (I60).
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“So, I called the wife... I called the children in. They refused it, like... ‘No, no, we’re not doing it!’ [...], remember what I said, there will come a time when things go downhill; a moment [when] he has an emergency, and they will still tell you what you are going to do, you have to think about that, see?” (I25).
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| Team support in the decision-making process 23 RU (0.94%) |
The team’s involvement included eight professionals (if needed, psychologists assist, nurses participate), and when required, professionals communicate with each other to provide assistance or converse with the patient. However, one interviewee stated that they do not engage in any processes, and another mentioned a split among professionals, emphasizing that this support might not be adequate, as indicated in the following statement: “And, when it’s already decided, when it’s settled and encounters some resistance from the family, there’s some difficulty with the family’s understanding, their acceptance, you know? It’s at this point that the multidisciplinary professional is invited to step in” (I15). |
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BIOETHICS IN REFERRAL TO RRT
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Experience of bioethical dilemmas in professional practice 108 RU (4.44%) |
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There is difficulty in identifying the experience of bioethical issues among professionals. “But I never had an actual problem that ended up, I don’t know, at the ombudsman’s office or something like that. Not ever” (I3).
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21 professionals report having never experienced a bioethical issue; 5 admitted to having the experience, but don’t remember how it went. Among those who reported having had issues, the most frequent was the patient’s refusal to undergo dialysis, cited by 19 professionals. Some of the issues mentioned include: a patient arriving in emergency dialysis when consent is not obtainable; maintaining dialysis when it results in more suffering than quality of life; issues with the transplant process; non-adherence to treatment; refusal of transfusion by Jehovah’s Witnesses; conflicts with professional colleagues; blaming the doctor for patient complications; medication causing side effects with refusal [by the doctor] to change it; health professionals discouraging patients regarding RRT; conducting research; industry interests; requests for a biopsy to justify abortion; concealing of patient diagnosis; decisions regarding nutrition at the end of life; withholding treatment from a patient; and two professionals mentioned there too many problems, to the point they cannot be listed.
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| How do professionals incorporate bioethics into their actions and decision-making? 43 RU (1.77%) |
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The importance of respect for autonomy was reinforced: “Because firstly, when you present it to the patient, explaining the modalities, and allowing them to somewhat have this knowledge, you know?, you are treating them bioethically” (I1).
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However, there is concern about initiating RRT urgently because, according to professionals, it is challenging to promote and respect the patient’s autonomy at this time: “I say: look, when he gets sick, he’s going to be taken to the hospital unconscious, and there, no one will ask if he’s willing to start dialysis or not” (I4). This statement symbolizes a breach of autonomy by failing to consider and respect the patient’s wishes, instead prioritizing beneficence—proceeding with the procedure to save the patient’s life: “And one actually had an emergency; he arrived at the hospital unconscious and needed immediate admission but couldn’t... because I thought that by refusing to put him on dialysis in an emergency, I would be denying assistance, incurring negligence, that sort of thing” (I13). Another significant aspect reported is the constraints imposed by the healthcare system, which give rise to ethical challenges that professionals must address: “We also need to learn how to adeptly navigate the system’s limitations and strive to deliver optimal care for each patient case by case, wouldn’t you agree?” (I32).
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| Difficulty accessing PD 40 RU (1.64%) |
Professionals consistently report the persistent lack of vacancies for PD, underscoring the imperative to assess distributive justice: Referral to this therapy and the implantation of a Tenckhoff catheter pose significant challenges. The prolonged waiting time for the access to reach maturity emerges as a decisive factor in decision-making. This issue persists across Rio de Janeiro. Notably, not all facilities where interviews were conducted offer a PD program, and, among those that do, inserting new patients is challenging due to full capacity. A significant concern highlighted is the lack of awareness among many patients regarding the existence of this RRT. Professionals refrain from discussing it, fearing that expressing interest might result in referrals unavailability: “Right now, peritoneal dialysis isn’t even an option for them” (I18). “To be honest, we almost disregard PD. It’s not at the forefront of our minds because there are limited facilities that provide it... Our institution doesn’t offer PD, and within the public health system, we encounter significant challenges... Moreover, the environment [in] which we operate doesn’t facilitate access to PD either” (I24). |
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BIOETHICS IN REFERRAL TO RRT
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The patient’s right to refuse 29 RU (1.19%) |
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Professionals emphasized that patients may opt against RRT or decline any form of treatment, as RRT is a specific intervention. It is within the patient’s rights to choose conservative treatment. In transplantation, the donor can refuse, and so can the recipient. It is a mutual prerogative! Healthcare providers cannot compel patients to undergo RRT. “There have been instances where patients were been recommended for treatment, we made the referral, but the patient declined it entirely and left” (I44).
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“It does have an impact because there are patients who decline to initiate renal therapy, despite us explaining its benefits and that their kidneys are no longer functional... The patient won’t show up at the outpatient clinic, refuses to commence treatment, and subsequently disappears. Consequently, we’re left unaware of their fate” (I45).
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“There are patients who decline hemodialysis even when referred... And what can we do besides accepting the patient’s choice, right? We can’t force anyone” (I57).
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| The difference between youth and senior advising 27 RU (1.11%) |
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There is a moral consideration evident in the statements, highlighting the variance in treatment approaches, particularly regarding age: “So, I don’t typically recommend transplantation for very elderly patients. For younger patients, I emphasize transplantation alongside hemodialysis and peritoneal dialysis, aiming at their recovery and societal reintegration. With elderly patients, I recommend peritoneal dialysis, hemodialysis, and have even suggested palliative care” (I9).
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Naturally, clinical indications must also be taken into account. There is a need to rethink statements such as the ones below: “And then, depending on the patient’s age, I’ll discuss... for older patients with multiple comorbidities, I typically present four options, right?... However, for certain age groups, I may not broach the topic of transplantation at all, focusing instead on the main three options. I usually prefer to engage in discussions regarding transplantation with patients up to 60 years old, or perhaps up to 70 if they don’t have significant comorbidities... So, I typically discuss both hemodialysis and peritoneal dialysis with them” (I26).
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It is important to emphasize that a contraindication for a particular treatment modality does not prevent the professional from informing the patient about its existence. Additionally, it is crucial to underscore that acceptance of treatment options is not solely determined by age; rather, it is influenced by various factors. “We often exercise more caution with older patients, while with younger patients, we’re inclined to initiate treatment earlier... Elderly patients with well-established family support, and who may have hypertension or diabetes, tend to be more easily resignated. Younger patients can be more challenging, I think it doesn’t need an explanation” (I60).
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