Shared Decision-Making for Choosing Renal Replacement Therapy

Abstract

Chronic kidney disease is common worldwide, and the number of patients with end-stage kidney disease (ESKD) is expected to rise over the next decade. These patients must select one of the three main treatments available to them: conservative care, dialysis (hemodialysis or peritoneal dialysis), and kidney transplantation. Hemodialysis can occur in a dialysis center (in-center dialysis) or in a person’s home (home dialysis). The international guidelines support the approach of shared decision-making (SDM) for selecting renal replacement therapy. In this approach, patients and healthcare providers collaborate to make medical decisions that incorporate the patient’s values and preferences in conjunction with the best evidence. However, in some clinical practice, patients feel that they do not receive the full knowledge of all available options or that the selection of certain treatment is not well reasoned. In this chapter, the application of SDM for the selection of renal replacement therapies will be discussed in detail.

1. Introduction

Chronic kidney disease as a long-term condition is a common chronic disease characterized by progressive and irreversible damage and loss of the function of kidneys and often leads to end-stage kidney disease (ESKD) [1, 2]. The prevalence of ESKD continues to increase globally [3, 4]. In 2010, there were 2.62 million patients with ESKD worldwide receiving renal replacement therapies, and the number of people needed for dialysis was projected to double by 2030 [5]. Moreover, it has been predicted that chronic kidney disease will be the fifth leading cause of mortality by 2040 [6]. Chronic kidney disease has a major global economic impact and influence on global health and quality of life of patients and their family [7].

2. Shared decision-making

When there are numerous treatment options in the healthcare systems, healthcare professionals should involve patients and their families in the process of decision-making on their care so that they can select care that meets their preferences and value needs and reflects what is important to them. This process is called shared decision-making [8]. Shared decision-making (SDM) is defined as a process in which patients, their family, and healthcare professionals try to collaborate with each other to choose the best treatment option for patients [9]. SDM engage patients and their families in the process of decision-making about diagnosis, treatment, or follow-up when more than one medically reasonable option is available [10, 11]. In fact, SDM is made by knowing and understanding the best available evidence on the benefits, harms, risks, and effectiveness of all available options; considering the patient’s personal preferences and values; and mutually agreeing upon the course of care [8].

SDM is based on the notion that healthcare professionals are the expert persons on the evidence of medical and patients are the experts on what matters most to them [12].

In a systematic review by Makoul & Clayman [13], 161 definitions were found for SDM. They summarized the main elements of SDM in an integrative model of SDM. The model showed nine crucial elements and features that can be used in a variety of healthcare settings. Healthcare professionals could use these SDM-related specific behaviors during consultations with patients and families:

• Explain and define the patient’s diagnosis, treatment, or follow-up process

• Present all available options

• Discuss the pros and cons of all available options (risks, benefits, costs)

• Identify patient preferences and values

• Discuss patient skills, abilities, and self-efficacy

• Provide full knowledge of what is known and provide the necessary recommendations

• Clarify and evaluate the patient’s understanding

• Make a decision or defer decision-making

• Organize the follow-up.

In many healthcare encounters, the notion that only healthcare providers could access evidence is no longer accepted. As a substitute, shared decision-making assumes that both the healthcare professional and patient require access to information about the evidence for providing a decision. Thus, considering and respecting both the healthcare professional’s recommendations and the patient’s preferences is necessary for providing an effective SDM [8].

2.1 Outcomes of shared decision-making

Shared decision-making (SDM) has many positive outcomes for patients and families. A systematic review showed that SDM was most likely related to affective-cognitive patient outcomes (54%), compared with 25% of health outcomes and 37% of behavioral outcomes [14].

Shared decision-making (SDM) is considered an essential factor of safe and effective healthcare when there are available options to patients. Moreover, SDM is in line with the notion of “No decision about me without me” and supports patient-centered healthcare [15].

2.2 The steps of shared decision-making

Although there are some models for SDM, the following simple steps proposed by Stiggelbout et al. [10] could be understood easily:

Step 1. The healthcare professional should inform the patients and their families that a decision is to be made, and it is important to consider the patient’s view.

Step 2. All the available choices should be explained by healthcare professionals. Moreover, they should clarify the pros and cons of each option.

Step 3. Both the patient and healthcare professional discuss the patient’s values and preferences; the professional try to support the patient in the discussion.

Step 4. Both the patient and healthcare professional discuss the patient’s decisional role preference, make the decision or defer it, and discuss possible follow-up plans.

3. Conservative care

Conservative care for kidney disease means that the healthcare professionals continue the care without performing dialysis or kidney transplantation. The aim of conservative care is to improve the patient’s quality of life, manage the symptoms, and preserve kidney function for as long as possible [1, 16].

4. Renal replacement therapies (RRTs)

Equity of access to renal replacement therapy (RRT) varies between countries based on rationing and finance. Renal replacement therapy (RRT) is a therapy for patients with kidney failure that replaces kidney function (i.e., blood filtration, electrolyte homeostasis, fluid regulation, toxin removal/secretion, and filtrate transport and drainage). Currently available RRT approaches include dialysis and kidney transplantation.

4.1 Dialysis

Dialysis options include hemodialysis (HD), which can either be done at home (HHD) or in-center (ICHD), or peritoneal dialysis (PD). There are two types of PD including Continuous Ambulatory Peritoneal Dialysis (CAPD) or Automated  Peritoneal Dialysis (APD). In CAPD method, the schedule of dialysis fluid exchanges is done by hand. However, in the APD method, a machine called “cycler” is used to empty and fill the peritoneal cavity three to five times during the night [3, 16, 17].

4.2 Kidney transplantation

Kidney transplantation is the most effective and preferred form of renal replacement therapy which has a significant survival benefit compared with other renal replacement therapies. Using a kidney transplantation procedure, a new healthy donor kidney is placed in the patient’s body. It can offer a longer and more active life for patients with kidney failure. Moreover, there are fewer limitations on diet and fluid intake. However, patients should take immunosuppressant or anti-rejection medicines as long as the new kidney works to keep the immune system less active [18].

5. Shared decision-making in patients with chronic kidney disease

SDM in nephrology settings is a challenging issue because of the complexity of chronic kidney disease and the preference-sensitive choice to be made [19]. When chronic kidney disease progresses toward end-stage kidney disease (ESKD), patients need to make decisions for different renal replacement therapies to be survived [1]. They must continue receiving one of the RRT treatments for the rest of their lives. Therefore, it is important for patients to select the treatment option that is the most suitable and acceptable treatment based on the preference and values of patients [20].

To help patients for making timely treatment modality decisions, international guidelines in nephrology suggest shared decision-making (SDM), where the treatment is selected based on patient’s values and preferences [21]. SDM in nephrology engage the patients in decisions that best suit patients’ preferences and their living and medical situations [22]. In the SDM process for renal replacement therapies, both healthcare providers and patients choose the best treatment option together after assessing the evidence and discussing the pros and cons of all available options (including kidney transplantation, hemodialysis, and peritoneal dialysis), individual preferences, and the circumstances of the patient. During the SDM process, outcomes from weighing the clinical guidelines are weighed against personal beliefs and preferences [22].

5.1 Shared decision-making for the selection of renal replacement therapies

Patients suffering from advanced chronic kidney disease should make complex decisions for selection of all possible renal replacement therapies [1]. Each option of RRT could impact their everyday life. The selection of RRT is a usual situation for ‘informed shared decision-making’ (iSDM). Van Dulmen et al. [23] proposed four essential elements for iSDM in RRT: (a) at least two persons are engaged in decisions, (b) both share information according to the evidence-based care, and (c) building an agreement on the preferred choice, and where (d) a consensus is made on the treatment option with joint responsibility.

5.2 Time of shared decision-making for selection of RRT

Because kidney function of patients with chronic kidney disease usually declines progressively, the healthcare providers especially the nephrologists and nurses have multiple opportunities to discuss all available options of renal replacement therapy.

There are when shared decision-making for a patient with CKD is important at least three times: when the patient enters stage 4 (estimated glomerular filtration rate [eGFR] < 30 ml/min/1.73 m²), when the patient is going to start RRT in the near time (eGFR <15 ml/min/1.73 m²), or when the healthcare provider find no evidence that further treatment will prolong life (age ≥ 75 years and multiple comorbidities, or eGFR <5 ml/min/1.73 m²). In this stage, a nephrologist should discuss all available options for renal replacement therapy with the patient and family and support the patient in the selection of a suitable lifesaving treatment based on the patient’s preferences and the best evidence [24].

6. Outcomes of shared decision-making for selection of RRT

According to the literature review, SDM is considered an important factor for positive patient-centered outcomes. Successful SDM could increase patients’ adherence and compliance, their satisfaction, as well as the promotion of awareness about the disease. Moreover, SDM can decrease the cost of treatments and reduce the symptoms [25].

A study in Germany conducted by Robinski et al. showed that successful shared decision-making is one of the main factors increasing the satisfaction of dialysis patients on long-term treatment [26].

Patients with ESKD need to be assisted and encouraged to choose the most suitable renal replacement therapy in an active manner proactively rather than being passive and relying on healthcare professionals’ decisions. Patients’ participation in the decisions could improve the patients’ empowerment and autonomy in making treatment decisions [27].

During the SDM process, healthcare professionals provide information and evidence regarding different types of treatments, whereas the patients express their own preferences and opinions. The exchange of this information could help to ensure that patients and their families understand the appropriate information, thereby it reduces decision conflicts [28]. Moreover, receiving support during the effective SDM increases patients’ self-efficacy [20]. Moreover, it has also been reported that SDM can optimize decisional outcomes, improve treatment compliance, reduce anxiety, and lower demand for healthcare resources [29].

7. Strategies for improving SDM in the choice of renal replacement therapy

Patients with CKD have numerous sources of information which could help them to make an informed decision. The nephrologists, due to their medical competence, could play a main role in providing medical advice. Moreover, Nurses can play a crucial role in explaining the available choices of RRT in and in providing emotional support for them. Patient’s family members could be engaged in decoctions and providing support [23].

In a recent study, Stoye et al. [23] conducted a study to explore nurses’ and nephrologists’ perceptions of their participation in shared decision-making for selecting renal replacement therapy. The results showed that due to the high disease burden on patient’s life, shared decision-making for the selection of renal replacement therapy is mostly difficult issue. Providing full education and training for patients and the consistent participation of nursing staff and peer education facilitated the SDM process [23].

Although nephrologists and nursing professionals are professional experts, family members of patients and peers are considered experts by virtue of their experience [30]. Structured peer mentoring programs or peer counseling could help patients to select a desired option.

Shifting the paradigm of medicine from a predominant biomedical and technical orientation to a person-centered orientation of SDM might improve decision-making practices [31].

8. Conclusion

Collaboration of healthcare providers and patients with kidney disease as a team in the shared decision-making process increases the patient’s capacity to develop person-centered care and effective life plan that not only improves patients’ survival but also prepares them for end-of-life care. This collaborative approach can improve the quality of care for all patients who suffer from CKD. However, a shared decision-making process should be developed in each country based on the heath care policies, resources, and facilities to engage patients and their families in the decision for the selection of kidney replacement therapies (KRTs).

Acknowledgments

I would like to thank all the healthcare professionals who support the idea of shared decision-making in patients with CKD.

Conflict of interest

The authors declare no conflict of interest.