Kidney supportive care—seeing beyond the disease

INTRODUCTION “Cure sometimes, treat often, comfort always”—Hippocrates, the father of medicine. Dame Cicely Saunders, a pioneer in palliative care and hospice systems in her book titled “Beyond the horizon, a search for meaning in suffering,” explained the burden of suffering in patients as loss of love, of freedom, of abilities, of self-respect and peace of mind are all forms of suffering that assail us in sickness and bereavement. We look back on the past and what has gone; we wake each day in a bleak present and we look ahead in fear or apprehension. Worst of all is the fear that we will not be able to go on enduring our circumstances or that they will become even more difficult to handle and that we will finally crumble.[1] Unlike in the earlier decades when the strategies of palliative care were focused mainly on cancer patients and little attention was paid to patients with other life-threatening conditions, studies showed that patients with conditions, such as chronic kidney disease (CKD), also experience a similar degree of symptom distress as cancer patients. The earlier WHO definition of palliative care stressed its relevance to patients not responsive to curative therapy. Presently, there is wide recognition that the principles of palliative care should be applied as early as possible in the course of any chronic, ultimately fatal illness. This change in thinking emerged from the new understanding that problems at the end of life have their origins at an earlier time in the trajectory of the disease. Symptoms not treated at onset become very difficult to manage in the last days of life. While pain relief is still an important component, it is by no means the only consideration. The physical, emotional, and spiritual needs of the patient are all considered important concerns in palliative care. It no longer considers just the patient, but includes considerations of the health, well-being of family members and the carers working with the patient. It extends beyond the period of care for the patient and includes the considerations of the need to support and counsel those who have been bereaved.[2] Based on guiding principles of kidney disease: Improving Global Outcomes (KDIGO) consensus conference, the term “supportive” is used instead of “palliative” as it is generally preferred by patients and healthcare professionals. Kidney supportive care (KSC) involves services that are aimed at improving the health-related quality of life (HQRL) for patients with established CKD at any age and can be provided together with therapies intended to prolong life, such as dialysis. Supportive care helps patients cope with living and dying, regardless of life expectancy. KSC is an approach that aims to improve the quality of life for people for whom kidney disease either directly or indirectly substantially impacts their well-being, treatment options, access to care, and their families through the prevention and relief of suffering through early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.[3] CKD and kidney failure are significant global health challenges. It is a progressive condition that affects >10% of the general population worldwide, amounting to >800 million individuals[4] and the reported prevalence of CKD in India is 17 percentage.[5] KSC adopts a patient-centered, holistic approach to address the diverse needs of individuals, focusing on symptom relief, psychological support, and improving overall quality of life.[6] By integrating elements of palliative care, KSC ensures that treatment decisions are aligned with the patient’s preferences, values, and goals, offering a more personalized and compassionate approach to care. The conceptual model of kidney palliative care[7] is divided into two categories: a) Primary kidney palliative care—management of basic symptoms, diagnosis, and the start of depression and anxiety treatment, and address the prognostic issues and advanced care planning. Primary kidney palliative care is usually addressed by nephrologists with a palliative care perspective, b) Specialty kidney palliative care—addressing refractory symptoms, managing complex depression, anxiety, grief, and existential distress, complex, serious illness communication, and conflict resolution regarding goals of care. Speciality care is usually addressed by specialists in palliative care [Figure 1].Figure 1: Conceptual framework for kidney supportive care[ 2 , 3 , 7 ]Core components of kidney supportive care The core components of kidney supportive care are as follows: a) Shared decision-making and patient autonomy: It is a critical aspect of patient care, particularly in managing complex conditions, such as kidney failure, as it ensures that treatment aligns with the patient’s values, goals, and preferences while respecting their autonomy. Effective communication plays a vital role in this process, with providers needing to present information in a clear, empathetic, and compassionate manner[8] b) Symptom management: Patients often face debilitating symptoms, like fatigue, pain, breathlessness, nausea, and itching, which greatly affect their quality of life. KSC uses evidence-based strategies, combining pharmacological treatments with non-pharmacological approaches, like physical therapy and relaxation techniques, to relieve these symptoms. c) Crisis planning: Ensure that patients are aware of common symptoms and have a plan for managing them. This may involve knowing who to contact for assistance and having anticipatory prescriptions in place. d) Advanced care planning +/- End of life care and hospice: Early discussions on prognosis and end-of-life preferences are essential at KSC, ensuring that treatment aligns with the patient’s values and goals. This includes decisions about resuscitation, hospitalization, and palliative care. Palliative care teams support patients and families in planning for the future, respecting their wishes, and addressing physical, emotional, and spiritual needs.[6] Palliative care can be provided at any stage of a serious illness, whether or not curative treatment is being given, offering a holistic approach to care. e) Integration with community services: As a patient’s condition worsens, self-care may become challenging, ensure proper support is in place for daily activities and that nursing care is available as needed. f) Psychological and emotional support: Living with kidney failure can greatly impact mental health, leading to anxiety, depression, and feelings of hopelessness. Psychological support, such as counselling, cognitive behavioral therapy, and peer support, along with family care discussions, helps address these challenges. Studies show that support groups reduce isolation and empower patients in managing their condition. Involving families in care discussions also eases caregiver burden and creates a supportive environment for the patient.[9] Multidisciplinary approach in KSC KDIGO 2012 explained the importance of a collaborative multidisciplinary approach to bring their expertise to address the diverse needs of patients as a) Comprehensive care with the participation of nephrologists. They not only provide expert care management in diagnosis and treatment but also act as coordinators, ensuring seamless collaboration among team members belonging to palliative care, nursing, dieticians, and social workers. They also play a central role in the diagnosis and management of medical complications, thus ensuring compassionate support to the patients throughout their journey in kidney failure. b) Palliative care specialists bring critical expertise in symptom management, communication, and end-of-life care, ensuring that patients receive compassionate, holistic support throughout their journey with kidney failure. c) Nurses are vital in providing hands-on care, closely monitoring symptoms, and educating patients on how to manage their condition. d) Dieticians optimize nutritional status by advising on dietary adjustments. e) Social workers address psychosocial issues, such as assisting with access to resources and offering caregiver support.[3] KSC needs to be integrated with National health care systems. This helps in training health care providers on KSC principles, funding issues, increasing public awareness, and taking the help of telemedicine and community-based programs. KSC benefits in symptom management, quality care, and reduction in healthcare costs. The challenges for the effective implementation of KSC to the needy are limited awareness, resource constraints, and cultural resistance. Training and education of healthcare providers with the understanding of patient perspectives will improve the overall acceptance and effectiveness of the program. In conclusion, kidney supportive care provides a patient-centered approach in the management of kidney failure, taking care of quality of life, symptom relief, and shared decision-making to address the holistic needs of the patients and their families, ensuring a dignity of care to the needy. “You matter because you are you, and you matter to the last moment of your life”—Dame Cicely Saunders Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.