Open access peer-reviewed chapter - ONLINE FIRST
Abstract
This chapter addresses three main topics (subchapters): (i) acquisition of educational skills in palliative care that are relevant to all health professionals and ways to implement these skills in the field of nephrology; (ii) ethical considerations that are applicable and support clinical and specific decisions at different stages of chronic kidney disease, such as, respect for bioethical principles in decision making related to dialysis withdrawal, effective communication with the patient and family, end of life care; and (iii) implementation and definition of key performance indicators that ensure quality of care and are patient-centred. These three (interrelated) pillars will strongly contribute to the (positive and expected) changes in the field of kidney palliative care.
Keywords
- kidney disease
- palliative care
- education
- ethics
- quality indicators
1. Introduction
Throughout history, dialysis has seen incredible technological advancements, from primitive cellophane tubing machines in the 1940s to today’s modern hemodialysis and peritoneal dialysis procedures [1].
With dialysis becoming more widespread, however, patients and healthcare providers face new challenges.
On one hand, patients often suffer from more severe physical and psychological symptoms due to and comorbidity of the kidney patient population, and on the other hand, health systems face cost, access, and equity issues [2].
That’s why updated palliative approach to renal care is becoming increasingly important.
Palliative care in general is focused on symptom management and improving the quality of life for seriously ill patients, namely those with advanced kidney disease [3].
To provide adequate palliative care nowadays, healthcare providers need advanced education and also training to deal with ethical dilemmas, which are inherent to extreme disease situations [4]. Education and ethics, as well as quality standards ensure that patients will receive compassionate, respectful, consistent, safe, effective, and equitable care. Thoughtful ethical decision-making is also essential to guarantee that care is consistent with the patient’s values and goals [5].
The realm of kidney palliative care (KPC) has experienced significant advances in recent years due to progress in education, ethics, and quality standards, but still not enough to reach the level required to fulfill all the PC’goals [6].
In this chapter, we examine the crucial trends and progressions that are shaping the future of kidney palliative care (KPC) in the different areas. First, we explore how education and training of healthcare providers in KPC have developed over time. We then consider the ethical implications of managing end-stage kidney disease (ESKD), which is a multifaceted issue requiring careful consideration.
Regarding ethical issues, we believe that more efforts are still needed to establish ethical guidelines for decision-making, as well as education and training for professionals to support ethical practices in ESKD treatment. We also discuss the measures that need to be taken to achieve those objectives and any other unforeseen ethical challenge that may arise. Finally, we touch upon the future of quality standards in KPC. We discuss new frameworks for measuring and assessing the quality of care, such as patient-reported outcome measures, and underscore the importance of utilizing data systematically for continuous improvement.
Upon completion of this segment, readers will acquire a comprehensive understanding of how KPC has advanced and how it will likely continue to evolve in the future. Also, they will be well-equipped to navigate the rapidly changing landscape of kidney palliative care and will be able to provide high-quality, patient-centered care to patients with advanced kidney disease.
2. Palliative care education for nephrology team
2.1 Current situation of health-care professionals’ education in Europe
The United Nations and the World Health Organization (WHO) have clearly stated that the provision of PC is a moral responsibility of health care systems, and it is the duty of health professionals to relieve pain and suffering, whether physical, psychosocial, or spiritual, regardless of whether the disease or condition can or not be cured. Indeed, end-of-life care is one of the most important components of PC [7].
The sustainable development goals call on member countries to “significantly improve health financing and the recruitment, development, and training, as well as retention of health workforce” [8].
To date, insufficient skills of health workers remain a significant problem limiting access to palliative care services worldwide [9, 10]. For that reason, enabling access to PC education must be addressed simultaneously at its various components to speed up the process [11].
The WHO palliative care roadmap introduces three levels of palliative care education: (i) basic education for primary care physicians, (ii) intermediate education for secondary care professionals, and (iii) tertiary education for specialists [12].
In 2013, the European Association for Palliative Care (EAPC) released a document with core competencies for palliative care addressed to physicians and other health professionals in Europe [13].
2.2 Competencies in palliative care in nephrology
So far, most of the studies regarding palliative care competencies were conducted in North America, but many of them are cross-cultural [14, 15, 16, 17, 18].
According to those studies, all nephrology care providers should have the following primary palliative care skills [19, 20, 21, 22].
2.2.1 Understanding and communicating prognosis
The capability to prognosticate and communicate prognosis is crucial [23]. This can be a lengthy process that requires frequent repetition. In this matter, there is clearly a lack of studies enabling to translate prognostic factors into clinically useful prognostic tools, a topic scarcely addressed in the literature [24, 25].
2.2.2 Patient-centered decision-making
Ideally, patient-centered decision-making should be performed by a multidisciplinary team and be a family-oriented, as well as culturally appropriate process, in which the team and the patient agree on a course of action based on a shared understanding of the patient’s treatment goals [26]. The benefits and harms of treatment and the likely outcomes should be considered. All possible options should be openly discussed. These should include all dialysis modalities, withholding or abandoning dialysis, and an “opt-out” option for the patient after a dialysis trial [26].
2.2.3 Symptom management in ESKD
Patients with advanced CKD suffer from numerous symptoms, contributing to a severe disease burden. Some guidelines have been compiled to assist healthcare providers in managing patients with symptoms associated with advanced CKD.
It is recommended that physical and emotional symptoms be routinely assessed at each consultation using validated tools, such as:
2.2.4 Communication
Compassionate and effective communication is key to develop a functioning and trusting relationship between patients, families, and healthcare professionals [31]. It requires knowing what, with whom, and when to have difficult conversations, while maintaining a positive, nonjudgmental attitude. These skills can be taught and must be practiced. Protocols, such as SPIKES (Breaking Bad News) and the serious illness conversations are examples of evidence-based communication approaches [32, 33]. All conversations about bad news, especially those related to refusal or discontinuation of dialysis, should be led by a senior clinician in the team [34].
All parties must convey the same message when communicating with patients and families to avoid raising false hopes or distrust. Difficult conversations should be clearly documented in patient records and should always be followed by reflection and, if necessary, debriefing. The moral distress of physicians involved in dialysis withdrawal or renunciation requires the collegial support of leaders and other health care providers.
There are many barriers to meaningful conversations with patients and family members [35]: (i) the patient and/or family may misunderstand the diagnosis and prognosis due to cultural differences, (ii) physicians’ attitudes and beliefs about palliative care may not be adequately trained, and (iii) the time may be not sufficient to have difficult conversations. Those conversations should aim to manage conflict, acknowledge, and address all emotions, improve awareness of prognosis, and align care with patient and family expectations.
Essential conversations that should occur between health care professionals, patients, and families are: Breaking Bad News and Serious Illness Conversations [33].
Both types of conversations aim to offer a hopeful, achievable alternative with a carefully considered palliative care plan.
2.2.5 Advance care planning
Advance care planning (ACP) involves conversations with individuals about their preferences and wishes. They are best conducted when patients are relatively healthy, can communicate well, and are mentally capable of making independent decisions. Values, goals, and outcomes that are important to patients and their families should be addressed. The conversation should be ongoing and not a one-time event, with the opportunity for review as circumstances change. The plan helps the health care team make treatment recommendations that are consistent with the established values. This becomes increasingly important in preparation for the phase when the patient is no longer able to make or verbalize decisions independently [36].
Research shows that patients expect the physician to initiate those conversations. Experience shows that when conversations are done skillfully, they do not increase anxiety or hopelessness [37].
2.2.6 End-of-life care
Ethical and compassionate care is the primary goal in caring for a patient at the end of life [38]. This period can be defined as the “period of irreversible loss of function before death” [39]. Care plans must be adapted to provide patients with a “good death,” in which distressing symptoms and suffering are managed competently and compassionately [38, 40].
The ethical framework underlying end-of-life care includes: [38, 40].
Maintaining open communication with the patient and family.
Providing appropriate relief of pain and other symptoms.
Ensuring continuity of care for the patient.
Not subjecting the dying patient to futile treatment that may only increase the level of suffering.
Providing integrated bio-psycho-social and spiritual care.
Supporting actively families during the time of their grief.
2.2.7 Withdrawal from dialysis
A periodic review of the decision to take dialysis should be included in the plan [41, 42]. The schedule for these reviews should be agreed upon at the initial consultation. For the following groups of patients, the American Renal Physicians Association suggests that it is reasonable to consider dialysis discontinuation (not starting or stopping dialysis), when: [43].
A condition is present that precludes the technical process of dialysis (e.g., an uncooperative patient with advanced dementia), or the patient is medically unstable (e.g., suffers from severe hypotension).
A terminal nonrenal disease (we recognize that some patients may see the benefit and choose dialysis).
Refusal/discontinuation of dialysis in a patient who can make a decision and who is fully informed and makes a voluntary decision.
Patients who are no longer capable of deciding and who have previously indicated in an advance directive that they refuse dialysis or whose legal representatives/representatives refuse dialysis or request its discontinuation.
Patients with irreversible profound neurological impairments.
Patients over 75 years of age with two or more of the following criteria for a poor prognosis:
dependence on care from others due to increasing physical and/or emotional and/or mental health problems.
significant weight loss (> 10%);
high comorbidity score, e.g., modified Charlson comorbidity index of 8 or more;
significantly impaired functional status, for example, Karnofsky score < 40 with limited reversibility;
Patient requests palliative care or chooses to reduce, discontinue, or not receive treatment.
3. Ethical challenges, strategies and legal considerations faced by the kidney palliative care movement
In this section, we will address the most relevant aspects of medical ethics in the field of palliative care, applied to ESKD.
3.1 Ethical framework in renal palliative care
It is fair to state that, in general, treatment of end-stage kidney disease (ESKD) with dialysis is associated with a significant patient survival advantage, but this advantage is dramatically reduced for older people (mostly above 75 years) with major comorbidities (mainly coronary artery disease), or poor functional status, and may be lost if we consider hospital free survival and health-related quality of life (HRQOL) [44, 45].
In patients older than 85 years of age, receiving the highest intensity of care, the median duration of survival after dialysis initiation is typically less than 6 months, with more than a third of that time spent in the hospital [46].
Kurella and coworkers [47] showed that of all ESKD patients nursing home residents in the United States (U.S.), within the first year after initiation of dialysis, 58% had died and 29% had a decrease in functional status, maintained in only 13%.
Most elderly patients accept dialysis treatment but do not choose it [48]. A recent survey [49] showed 61% of dialysis patients sampled reported that they regretted beginning dialysis. Over half of these indicated that they started dialysis because of the urging of their nephrologists, and in 14% it was their family wish.
Therefore, for aged and frail patients, conservative medical treatment (CMT) without dialysis should be discussed not as a last resort, but as a clear treatment option that may be most effective in promoting patient goals [50].
Nephrologists are responsible for presenting relevant information as unbiased and easily as possible, sharing the decision process with patients/families, to support and implementing the treatment decisions reached by all stakeholders without ever closing the door to an opinion change by the patient or his family in favor of life-prolonging [49, 51].
Despite the urgency of a new approach to this selected group of patients, well known to all working in the field of chronic dialysis, we must be cautious, as age and frailty may be used as targets for cost-containment policies and resource rationing, disguising a hidden agenda of saving family resources, reducing costs on behalf of the community or the health system, that cynically perverts the movements for patient’s autonomy and “death with dignity” [52].
3.2 Communicating information and informed consent
The initiation of dialysis presumes the appropriate provision of informed consent. Ideally, informed consent begins as part of advance care planning (ACP) long before a person decides about renal replacement treatment (RRT).
The importance of ACP is underscored by the high rates of withdrawal from dialysis, which is second only to cardiovascular disease as a cause of death and accounts for one-quarter of dialysis patient deaths [53].
Informed consent is the modern clinical ritual of trust. It is more than simply getting a patient to sign a written consent form.
A physician obtaining consent from a patient or family does not have to present all treatment options available; his professional responsibility, according to the shared decision-making guideline, is to exercise clinical judgment and guide the patient/family only through medically indicated options and not present choices that are not real choices [54].
Nephrologists in dialysis units have an ethical obligation to provide their patients with information on their policies about advance directives and to offer the patient an opportunity to complete an advance directive. We are equally obliged to participate in shared decision-making with patients and families. A large part of a physician’s role in that process is providing the information patients and families require to make informed decisions [40].
Because the quality of our patients´ lives changes, so do their goals for care and treatment.
Because these potential patients´ representatives performed no better than chance, we must allow our patients to express their will timely while competent to do it and that we educate their designated surrogates.
Advance directives (AD) are part of the ACP and include the issue of a living will (LW), written evidence of an individual’s wishes concerning future care in the event (and only then) he becomes incompetent.
Also, part of it and, in the authors’ opinion, extremely relevant is the appointment of a health care proxy, an agent (surrogate) to act on the patient’s behalf should he become incompetent. This is the most effective way to guarantee that patient autonomy will be protected, even in cases not mentioned or predicted in the LW. Coaching surrogates on why dialysis is no longer an appropriate and useful treatment for a certain patient is key to helping them represent the patient [40].
3.3 Shared decision-making
The Renal Physicians Association (RPA) and the American Society of Nephrology (ASN), following the Institutes of Medicine’s (IOM) recommendation [42], published the shared decision-making guideline, whose goal was to provide clinicians, patients, and families with the most current evidence about the benefits and burdens of dialysis for patients with diverse conditions, followed in 2010 by the second edition of this guideline, enriched by new evidence on outcomes of dialysis in different patient populations.
The shared decision-making guideline also proposes a structured approach to identifying, analyzing, and resolving ethical issues in clinical medicine. The four topics approach includes (a) Medical indications, (b) Patient preferences, (c) Quality of life, and (d) Contextual features. This approach incorporates in intricate relationships the ethical principles of (i) respect for patient autonomy, (ii) beneficence, (iii) nonmaleficence, (iv) distributive justice, and (v) professional integrity. These principles, not rarely, may conflict among them in individual cases [55].
Regarding
3.4 Respecting without enforcing autonomy
According to Singer and coworkers, what patients want at the end of life is: (i) receiving adequate pain and symptom management, (ii) avoiding inappropriate prolongation of dying, (iii) a feeling of control over their lives and decisions, (iv) not becoming a burden to their family, and (v) getting closer to their loved ones [57].
Modern medical ethics reflects the erosion of trust in the doctor-patient relationship because, in our clinical decisions, the autonomy model is replaced by the beneficence model. However, the irony is that these efforts to safeguard patient autonomy and offer protection against possible abuse have failed to reestablish trust [58, 59, 60].
Public trust in medicine has faltered despite successes, efforts to respect persons and their rights, and regulations to protect them. Why? The short answer is: contracts (such as informed consent) cannot be a substitute for beneficence and the trust accompanying it.
Unfortunately, in the large majority of scenarios, where we desperately need to share decisions with our patients, they have no capacity to exert their rights.
A patient’s inability to complete a written advance directive or make an end-of-life decision does not alter the standards his healthcare provider must hold his surrogates to when making decisions on his behalf. Those standards include the patient’s wishes, substituted judgment, and best interests.
So, the question stands. How to give autonomy to those who cannot use it? Moreover, never impose it on those who want to forgo their right. The answer to the first question is ACP/living wills/health care proxy, but unless formerly designated and properly coached, surrogate decision-makers are quite imperfect to represent patient’s wishes. On the other hand, not every patient, or family member wants to participate in difficult decisions. In ICUs in France, more than 50% prefer to forgo autonomy [61].
To make things more difficult, patient preferences are not stable, rather evolve, as they get sicker and elder, so does their preference for a higher level of care [62].
3.5 Withholding and withdrawing dialysis
Dialysis can sustain life, but dialysis may also be viewed as merely a forestalling of death, a prolongation without progress for patients suffering many indignities. This dilemma highlights the need to emphasize clinically meaningful outcomes, the focus of which may be quality of life rather than quantity of survival. Technical success and availability of kidney replacement therapy (KRT) have blurred the distinction between the opportunity to extend life and the obligation to do so [63].
In its practice guidelines, the RPA identified some conditions in which it is ethical to withhold or withdraw dialysis, many of which were later incorporated in the KDIGO 2015 conference on supportive care in CKD [26].
Regarding withdrawal from dialysis, KDIGO states that this “is ethically and clinically acceptable after a process of shared decision making,” however, not before all potentially remediable factors contributing to that decision, such as depression, pain, or other kind of suffering, as well as reversible social factors have been excluded, or properly addressed [26].
3.6 Legal implications of our ethical decisions
The definition of a competent patient has key legal implications in assessing our ethically guided decisions. The competent patient must fully understand: (i) the relevant clinical information provided, (ii) the possible consequences and outcomes of his clinical situation, (iii) and tell apart the different diagnostic and therapeutic options presented and also be able to communicate his decisions and choices [64].
Patients have the right to decline medical treatment after receiving a full explanation of the diagnosis, prognosis, and all appropriate treatment options for their case, or even to refuse to receive distressing clinical information or participate in shared decision-making [60].
According to the RPA guidelines, an explanation of treatment options should include: (i) available dialysis modalities, (ii) not starting dialysis and proceeding with conservative management, including palliative care, (iii) a time-limited trial of dialysis, and (iv) discontinuation of dialysis and receiving end-of-life care.
A time-limited trial is “an agreement between clinicians and patient/surrogate decision-makers to use medical therapies such as mechanical ventilation, enteral feeding, or dialysis over a defined period to determine if the patient improves or deteriorates according to predefined clinical outcomes” [65].
It is important to highlight that most published policy and research in the field of medical ethics in the end-of-life in dialysis patients has been conducted in the U.S. and other Anglo-Saxon countries [66, 67, 68, 69, 70]. In many other places, withdrawing has not always had the same legal value as withholding dialysis. The legal system and medical profession do not always recognize ACP and living wills, and local religion and culture may constitute important hurdles to modern ethics, as depicted in this chapter.
4. Quality standards for kidney care
4.1 The current model of kidney care
The current healthcare model for advanced chronic kidney disease (CKD) and end-stage kidney disease (ESKD) is primarily focused on optimizing dialysis care. That model, however, fails to support complex treatment decisions, such as starting or stopping dialysis, and it also overlooks the emotional and existential challenges faced by patients with advanced illnesses [2, 71]. Many patients with severe CKD and ESKD display unmet care needs, namely distressing symptoms and functional limitations [27]. Despite receiving costly and highly intensive end-of-life care, the quality of care in many cases is considered insufficient by their families [49].
To meet the needs of those gravely ill patients, it is proposed to integrate palliative care into their care plans [72, 73]. Kidney palliative care (KPC) is an interdisciplinary model of person-centered medicine that seeks to optimize health-related quality of life (HRQoL) and preserve human dignity through strategies. Among them are: (i) dedicated communication with patient and family, (ii) shared decision making, (iii) planning future health care/treatment, and (iii) management of pain as well as (iv) biopsychosocial and spiritual problems, including grief and proper end-of-life care [26].
In recent years, reimbursement models have incorporated incentives based on healthcare quality indicators (QI), which are based on international best practice guidelines [74, 75, 76]. Compensating healthcare units upon meeting specific QI values may be among those incentives.
In the United States and in some Europe healthcare systems, a range of QI have been used to integrate patient data related to kidney disease [77, 78].
Outcome measures (mortality, hospital readmission, and patient experience of care), intermediate outcome measures (dialysis adequacy and vascular access), process measures (blood transfusion), and safety measures (bloodstream infections and hypercalcemia) are examples of quality indicators suitable to aggregate patient data [79].
However, those metrics, according to Hayward, fail to offer a comprehensive evaluation of quality [80]. Intermediate outcomes can only provide useful measurements if they are directly linked to clinically outcomes.
Regarding palliative and end-of-life care, Holloway and Quill explore the significance of mortality as a QI. They argue that while mortality can be a suitable indicator for people with acute illnesses, who are not expected to survive, it is inadequate for those approaching end of their lives, suffering from several chronic illnesses [81].
Mortality may provide a reliable quality indicator for many people, but not for chronically ill people. This raises a critical question regarding quality measurements:
Special attention should be paid to end-of-life care as the current care models for critically ill patients with advanced CKD and ESKD are still inadequate [82, 83]. The hospice care model, which is the most recognized palliative care model in Europe, Canada, and the United States, needs revision to meet the needs of those end-of-life patients [6, 84, 85].
Hospice care is primarily intended for terminally ill patients who choose to forgo curative treatment. However, eligibility criteria for hospice care restrict access for ESKD patients unless they discontinue dialysis or display a terminal condition unrelated to ESKD, which allows concurrent hospice and dialysis care [86]. Furthermore, the reimbursement structure s dialysis care over ambulatory palliative care, creating a financial incentive to initiate dialysis rather than choosing interdisciplinary palliative care [87, 88].
The lack of coordinated and meaningful advance care planning highlights the absence of a patient-centered care paradigm for patients with advanced CKD and ESKD. For that reason, few patients are engaged in advance care planning. The current emphasis on dialysis overlooks the opportunity to explore patient goals as part of the advanced care planning process [89]. In this way, the separation between dialysis decision-making and advance care planning can result in care misaligned with the patient preferences. Patients are left with limited choices or unaware of the different options available.
Additionally, dialysis patients rarely receive advance care planning, which leads to high use of intensive treatment in the phase nearing death [90].
To summarize, with the current ESKD quality and performance incentive structure the result is that health care in many cases is misaligned with patient-centered care [91].
Given the heterogeneity of the dialysis population, it becomes clear that one-size-fits-all should not be suitable. However, it is difficult to incentivize palliative care provision under the quality payment programe due to the lack of appropriate and individualized quality measures [92].
4.2 Toward more meaningful and sustainable kidney care models
During the past few years, a notable shift toward a healthcare model that emphasizes patient-centered approaches has occurred [93].
However, clinical guidelines are based solely on the evidenced-based paradigm, where populations are the primary focus rather than individuals [94]. Nevertheless, there is a growing awareness of the need to better align patient-valued quality metrics with clinical guidelines and with this purpose several strategies have been put forward, namely: (i) establishing quality measures that correspond to the priorities and preferences of the patients, (ii) strengthening access to palliative care, and (iii) incorporating routinely advanced care planning [72, 94, 95, 96].
4.2.1 Establishing quality measures that correspond to the priorities and preferences of patients
Incorporating patient-reported outcomes (PROs) and patient-centered care approaches that match patients’ priorities and preferences is essential [97, 98]. This can be accomplished by developing and utilizing standard assessment tools that capture the unique needs, values, and goals of patients undergoing kidney palliative care. Involving patients in shared decision-making and care-planning processes guarantees that their priorities and preferences are properly valued [97].
Recently, it has been attempted to include patient-reported outcomes in the quality incentive program (QIP), such as pain and depression [83]. Although studies have highlighted the importance of integrating patient perspectives into palliative care quality measures, a debate about that topic is still missing [72, 83]. In assessing symptom burden and quality of life in patients receiving palliative care for advanced kidney disease, Davison S et al. identified the value of patient-reported outcomes [99].
4.2.2 Strengthening access to palliative care
Access to palliative care can be enhanced by using several approaches. Those include improving healthcare professionals’ knowledge and skills in palliative care through education and training programs, implementing early identification and referral processes to ensure timely access, integrating palliative care into standard kidney care pathways, and addressing barriers such as misconceptions and limited resources.
Several studies have shown the effectiveness of those strategies in improving access to palliative care for kidney patients. For example, in the study by Wachterman et al. with patients displaying end-stage kidney disease, it was found that increased palliative care should be associated with higher likelihood of receiving hospice care and lower intensive care unit utilization rates [100]. Another study by
4.2.3 Integrating advance care planning
Advance care planning and the existence of advanced directives are crucial quality measures in kidney palliative care, facilitating patient-centered decision-making and honoring patients’ end-of-life preferences [37].
Sudore et al. and Wright et al. have demonstrated that advance care planning and the use of advanced directives result in improved patient satisfaction, enhanced communication between patients and healthcare providers, and a higher likelihood of receiving care consistent with patients’ wishes, leading to better end-of-life outcomes in the context of kidney disease [36].
5. Conclusions
In kidney care, it is critical to take a multifaceted approach to address the needs of patients and their families, especially in palliative care. Healthcare providers must have the education and training to provide appropriate care while addressing ethical issues, such as end-of-life decisions and cultural and spiritual considerations. Quality indicators are important and is equally important to understand what quality renal palliative care really incorporates. By addressing education, ethics, and quality measurements, a comprehensive approach can be developed for KPC that responds to the unique needs of this patient population. Collaboration and communication among healthcare providers, patients, families, and stakeholders are crucial to ensure that kidney palliative care is evidence-based, patient-centered, and of the highest quality.
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