PC should be offered to patients with advanced diseases from all areas of medicine at an early stage, and not only reserved for comprehensive care for patients and families in end-of-life situations. This is due to the change in the model experienced in recent years, which involves not only applying PC to the patient on the basis of prognosis but also to palliative care needs at any time during the advanced disease. It is necessary to avoid the still common interpretation that a patient receiving palliative care is believed to have a very short life prognosis or that their level of intervention/treatment has been appropriate.

Hui et al.8 summarised the definitions published in articles, textbooks, dictionaries, etc., on concepts such as PC and supportive care (SC), among others.8 Different definitions of PC were identified, the most cited being the one defined by the World Health Organization (WHO)8,18 (Table 1). This review showed that the stage of the disease was a key factor in the differentiation of terms such as PC and SC,8 classifying in the SC all patients who require comprehensive care during all phases of the disease, while the PC would only focus on care in patients with advanced disease.8,19 However, at a practical level, it is understood the flexibilility of these definitions to expand their scope.

In the area of nephrology, kidney supportive care (KSC) has been established, aimed at ensuring that all patients receive high quality care thanks to a timely multidisciplinary approach.9,15,16,20 However, provision should be based on need and not just estimated survival.15,16 These support teams usually include nephrologists, PC experts, nurses, social workers, nutritionists, and psychologists, among others, allowing the principles and practices of PC to be integrated into all areas of nephrology (clinical nephrology, haemodialysis, peritoneal dialysis, kidney transplant, patients undergoing conservative treatment or end-of-life situations). Contrary to what is often thought, it does not necessarily mean suspending dialysis and only offering symptom control. On the contrary, it is about transferring global attention to the different stages of kidney disease,21 whether while they receive specific kidney management or comprehensive conservative care15,16 (Fig. 1).

Fig. 1.

Structure of palliative care in patients with advanced chronic kidney disease.

CKD G5: grade 5 chronic kidney disease (refers to cases with a glomerular filtration rate that drops below 15 ml/min/1.73 m2); KRT: kidney replacement therapy: comprehensive conservative care, synonymous with conservative kidney management (CKM).

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It is necessary to clarify that "non-dialysis treatment", as a definition in itself, does not integrate the concept of palliative care. An effort should be made to integrate PC into non-dialysis management.22

There are several tools to identify a patient need for palliative care, such as the PIG/GSF (Gold Standards Framework Prognostic Indicator Guidance) screening test,23 the surprise question,24 the SPICT™ (Supportive and Palliative Care Indicators)25 and the NECPAL CCOMS-ICO© (Identification of People with Advanced Terminal Illness and Need for Palliative Care in Health and Social Services)26 originally developed in Catalonia and later extended nationally and internationally. The identification process includes whether there is a negative response to the surprise question (Would you be surprised if the patient died in 12 months?), the grading of the disease, and the patient's and/or family's need for care,26,27 allowing the identification of palliative care needs with 92% (87.2%-94.2%) sensitivity and 33% (29.6%-36.3%) specificity.27 Once this need is identified, disease-specific treatment measures are not excluded and can be implemented by any team in any health service. This allows stepwise implementation of a palliative approach, avoiding dichotomous positions. Other specific palliative care implementation programs are based on “triggering situations,” such as the choice between conservative versus active treatment in the case of ACKD.28 These programs based on specific triggering criteria, have been shown in oncology to be more effective in optimising the timing of PC integration in the disease trajectory.29

Once patients with palliative needs have been identified, it is necessary to detrmine what these needs are, and there are also specific tools for the assessing symptoms, such as the modified renal ESAS (Edmonton Symptom Assessment System)30 and the POS version (Palliative Care Outcome Renal Scale-Symptoms), the latter translated and validated in Spanish.31

In the context of patients with ACKD and palliative care needs, it is essential to assess the trajectory of the disease in order to offer a replacement or conservative treatment, and to implement a timely adjustment of the therapeutic effort (ATE) in those patients in whom diagnostic tests or therapeutic interventions do not provide a benefit. It is crucial to note that ATE must be distinguished from concepts such as palliative sedation and euthanasia32; it is also the term that replaces the one previously used: limitation of therapeutic effort. In the field of nephrology, this adaptation implies certain peculiarities with respect to other life support therapies (such as mechanical ventilation), where the death of the patient occurs shortly after its cessation. In the case of dialysis or conservatively managed ACKD, however, the time is much longer and the patient's preferences must be recognised. In this way, ATE can have different applicable levels depending on the clinical situation and the preferences of the patient and their families, thus helping to avoid diagnostic and therapeutic interventions that could be considered futile. Certain institutions or departments have developed therapeutic adjustment guides that specify levels in order to standardise concepts and adjust interventions to the established level, which may vary according to the clinical situation and the patient's preferences (Table 2).

The ATE structure is based on processes such as advance care planning (ACP),33 until recently called shared care planning (SCP).34 The aim of this intervention is not only to record the patient's wishes, but also to understand and share preferences, values and expectations about future treatments and even the end of life, as well as to identify a representative for the patient at times when the person is unable to make decisions.35 The family is essential in conducting the ACP, as it is an opportune time to answer questions, facilitate communication about the illness, and learn about the patient's and family's concerns.36 An added benefit of the ACP is the creation of a bond of trust between the patient, family and healthcare team, which leads to better adherence to treatment.

Although ACP, understood as a process, could be carried out in a "traditional" way, expressing preferences on issues such as the use of invasive mechanical ventilation, cardiopulmonary resuscitation, transfusions, etc., the dynamic nature of the disease calls for individualised planning linked to clinical pathways, which in the context of ACKD could be divided into three phases: The first is the information phase, in wich the diagnosis and prognosis of the disease are explained to the patient and his family, which is particulary important in order to provide a solid basis for the continuity of the process; the second is the phase in which the loss of function is usually a turning point and a therapeutic adaptation is considered and decisions are made, such as conservative renal treatment versus KRT or admissions versus home management, among others; and the third is the phase in which decision are made in the context of the end-of-life. As clinical pathways affect the patient's health status and quality of life, it is useful to identify and review preferences for future care in light of a new clinical status.37

Sometimes ACP is confused with the Advance Directive (AD) or the Document of Prior Instructions.38 The AD may be part of the ACP; however, conducting the ACP process facilitates greater concordance between the patient's wishes and the professionals´ knowledge, helps to reduce the complexity of the decision-making process, and creates structured intervention strategies that are more effective than an isolated document.39 The AD would be the legal document, whereas ACP is a clinical process that seeks to involve the patient and their family in the decision-making process.40

This planning, as a communication process, is not closed and can be carried out early and as often as the patient needs, as their views and needs or the situation may change.37,39,40 The ACP and AD are flexible and their application will depend mainly on the patient's clinical situation and their ability to maintain active decision-making. An example in nephrology is that some patients on kidney replacement therapy have an AD in which measures to artificially prolong life through life support techniques are refused.

Specifically in nephrology, there are different concepts related to the approach to the patient in situations of advanced disease. One of these is the consensus between the clinician and the patient/family to maintain a conservative approach to the management of kidney disease (conservative renal treatment or comprehensive conservative care).16 Another example is that of patients on a regular haemodialysis or peritoneal dialysis programme, who have a high burden of comorbidity, frailty or dementia. In these cases, if the clinical or functional situation has deteriorated, a consensus should be reached with the patient and/or family about a gradual change in the therapeutic goal. Changes can range from a gradual reduction in the time and number of sessions, to less intensive treatment (palliative dialysis).41–43 In some cases, the possibility of stopping dialysis altogether should be considered. Palliative dialysis is in line with the goals of palliative care, which aims to ensure adequate symptom control and is not solely based on clinical indicators.44

It has been considered that the dialysis withdrawal can be a healthy process for the patient, the family and the professional team. With this in mind, a dialysis withdrawal protocol called Intro-ACP-WDC has been published.21,45

In clinical situations where the patient's prognosis is limited, there is a wide variety of terms: for example, terminally ill, terminal-stage disease (widely used in nephrology) and agony- which should be discarded because of their pejorative connotations. More widely accepted terms such as end-of-life situation, last days of life situation, and actively dying are preferred. Because of the ambiguity of some terms and the potential for misinterpretation, definitions have been explored to provide clarity and even a possible temporal consideration of prognosis. Hui et al.46 suggest using the term end-of-life situation in the presence of a progressive disease with months or less of survival and using actively dying in the presence of processes where survival is limited to a few days. In our context, the term used is last days of life situation, synonymous with actively dying, proposed by the National Institute for Health and Care Excellence (NICE) on the care of adults in the last days of life and by the Guía de Práctica Clínica del Sistema Nacional de Salud [National Health System Clinical Practice Guide].47,48

The management of a patient in the last days of life requires an awareness of the multiple needs that arise and a focus on the biopsychosocial dimension of the process, symptom control, and spiritual and family support to ensure a death in accordance with the person's values and preferences. From the perspective of symptomatic management, some patients may present with refractory symptoms despite timely treatment (e.g., use of opioids for dyspnoea) (Table 1).49,50 When suffering related to the refractory symptom persists, palliative sedation may be considered in the context of an advanced disease and with the patient´s consent.50–52 Therefore, within the framework of the above-mentioned ACP, it is necessary to know whether a patient in an end-of-life situation wishes to receive palliative sedation, where justified, always taking into account different personal aspects of the patient, such as religion, beliefs or wishes, as in some cases these aspects may influence the decision.

When a patient experiences a situation of suffering, whether due to poor symptom control, disease progression or demoralisation, he or she may express wishes to hasten death.53 In most cases, these wishes are reactive and do not always represent a request for euthanasia, so it is necessary to identify this suffering, recognise its likely origin, and try to offer an intervention to alleviate it.49,51,52

In Spain, the organic law regulating euthanasia was recently passed (Organic Law 3/2021 of 24 March, in force since 25 June, 2021),54 which is requested by the patient on the basis of certain criteria and evaluated by various specialists and committees to be approved or rejected.