"All clinical dialysis staff, including physicians, nurses, technicians, dieticians, and social workers, should be educated in the techniques of palliative care." --Anita Jablonski, RN, PhD

Palliative Care for End-Staged Renal (Kidney) Disease

 
The above statement by Dr. Anita Jablonski is from her article "Palliative care: Misconceptions that limit access for patients with chronic renal disease." [Semin Dial. 2008 May-Jun;21(3):206-9. PubMed] The purpose of the article is to explain some of the misconceptions about end-staged renal disease (ESRD) that hinder these patients from being treated with palliative care. The first question raised was why ESRD patients "rarely receive palliative care, comprising only 2.9% of patients admitted to hospice with noncancer diagnoses? This question is troubling given the shortened lifespan and high symptom burden experienced by this population."  One possible reason presented is that "Blurring of the differences between hospice and palliative care has led to the notion that only patients nearing the end of life are appropriate candidates for palliative care." If this assumption is correct, it helps to explain why "Patients with ESRD are rarely admitted to hospice unless they have opted to discontinue dialysis or suffer from a comorbid condition with a life expectancy of 6 months or less. The reality is that hospice is currently the primary source of palliative care in the United States and admission criteria are unlikely to change in the near future. Consequently, the majority of patients with ESRD are unable to access palliative care services. This situation will continue until palliative care programs are developed that are independent of hospice and not bound by its regulations." 
  

Many people with advanced kidney disease eventually require intensive treatment and end up on some form of renal replacement therapy (RRT), such as peritoneal dialysis or hemo-dialysis, which are life support treatments that have to be taken regularly. For that matter, Dr. Jablonski noted that "ESRD is a life-limiting illness that requires patients and families to make end-of-life decisions from the time of diagnosis. Deciding whether or not to undergo RRT is the first of many choices patients confront when their kidneys fail. Those who opt for RRT know that their survival depends upon regular dialysis or a successful kidney transplant as well as control of comorbid conditions. Patients and their families are often keenly aware that the future is uncertain and that death may not be far off. Patients question how long RRT will prolong their lives and whether they may stop dialysis if their condition deteriorates markedly. Given the uncertain but usually limited course of ESRD, psychosocial and spiritual support and assistance with advance care planning are essential components of the care of these patients."

 
Besides dialysis, it is not uncommon for patients with ESRD to experience other co-morbid symptoms that, if not properly treated, can negatively affect their (and their loved one's) quality of life (QoL). Dr. Jablonski iterated this by stating "These patients often suffer from additional comorbid conditions that further heighten the symptom burden. A recent study of symptom experience found that many of the dialysis patients interviewed expected symptoms as a part of their illness and believed that little or nothing could be done to alleviate them. This is important in that symptoms that are not effectively managed often adversely affect QOL. Patients would likely experience improved QOL through intensive symptom management, which is at the heart of palliative care."
 
And because of the need to evaluate and treat co-morbid symptoms, Dr. Jablonski referred to a tool called the Memorial Symptom Assessment Scale-short form that is helpful for evaluating cancer patients, but has also been used for ESRD.
 

Dr. Alvin H. Moss and a group of other physicians wrote a "Core Curriculum In Nephrology for Palliative Care," [Am J Kidney Dis. 2004 Jan;43(1):172-3. PubMed] in which it was noted that for patients with end-staged renal disease (ESRD) "Survival comparable or worse than patients with many types of cancer," and for mortality "About 23% of dialysis patients in the United States die per year." Or stated another way "More than 72,000 end-stage renal disease (ESRD) patients in the United States die per year." Renal disease is the sixth leading cause of death in the USA in 2007 (72,449), but that does not include the 45,344 people who die from nephritis (kidney inflammation).
 

A recent article by Tamura and Cohen titled "Should there be an expanded role for palliative care in end-stage renal disease?" [Curr Opin Nephrol Hypertens. 2010 Jul 16. PubMed] also discussed the rationale for palliative care for patients with end-staged renal disease (ESRD). They offered the fact that "Life expectancy for many patients with ESRD is similar or worse than that associated with common cancers, and dialysis initiation may not substantially prolong life for some patients." Another practical reason to have the option of palliative care for ESRD patients is "Despite knowledge of poor survival after dialysis initiation, advance care planning occurs infrequently. Rates of hospice use before death among patients with ESRD are less than half of those seen among patients dying of cancer, even among patients with ESRD who choose to withdraw from dialysis before death. Most patients with ESRD die in the hospital, often in an intensive care setting after undergoing expensive and invasive medical tests and therapies, while suffering with pain or other distressing symptoms." They also cited the evidence that "In studies of patients with other life-limiting illnesses, patients who had end-of-life discussions with a healthcare provider accrued fewer healthcare costs, used less invasive or burdensome  procedures, and entered hospice care earlier and more frequently."

 
To meet the needs of the vast population of patients who have a life-limiting kidney disease, a program called the Renal Palliative Care Initiaive (RPCI) was developed. The RPCI was instituted at Baystate Medical Center and eight other dialysis centers in New England.
 

One good article about the RPCI is "The Renal Palliative Care Initiative" [J Palliat Med. 2003 Apr;6(2):321-6. PubMed] Within this article, the authors discuss the mortality of ESRD by noting that "In 2000, data from New England clinics found that 28% of patient deaths from ESRD were preceded by decisions to stop dialysis." [J Palliat Med. 2003 Apr;6(2):321-6. PubMed] It was also pointed how "Approximately 80,000 Americans develop ESRD each year, and approximately 300,000 people currently receive maintenance dialysis in the United States.6 More than 40% of the prevalent population has diabetes, while other comorbid conditions include congestive heart failure (34%), coronary artery disease (25%), peripheral vascular disease   (15%), and cerebrovascular disease (10%). The annual mortality rate of dialysis patients in the United States is approximately 23%, with cardiovascular disease responsible for approximately half the deaths. Despite improved technology in dialysis care, 5-year survival remains low. Only 29% of the 1990 cohort of patients were alive after 1995."
  

In the opening of this article, the authors' described how nephrology has evolved into what it is today, but "For many years, nephrologists and the renal care community focused their attention primarily on the creation of sophisticated technology to extend life in the face of end-stage renal disease (ESRD). Such an approach has had considerable success but it has also tended to direct attention away from the physical, emotional, and spiritual suffering that complicates the lives of many of these patients and their families. It has deprived them of palliative interventions that have the potential to alleviate distress and to improve quality of life. The Renal Palliative Care Initiative (RPCI) was instituted to address the integration of palliative medicine into the practice of nephrology." To address the demanding needs of patients with ESRD "The overarching goal of the RPCI has been to integrate palliative medicine into the care of all patients with ESRD."

Probably the primary reason that the RPCI was established is because "Patients maintained with dialysis were found to experience a wide variety of chronic and, at times, disabling conditions. These included: fatigue (41%), insomnia (38%), cramping (36%), pruritus (35%), neuropathy (29%), poor spirits (24%), and nausea and vomiting (20%). Cardiomyopathy, congestive heart failure, progressive blindness from diabetes, and peripheral vascular disease leading to amputations, were common complications facing the population with ESRD."

The RPCI is an excellent example of how palliative care should be provided at all centers that care for patients with ESRD, which is revealed in the results of the article with their statement that "Nephrologists and nurses have become much more adept in the control of pain and suffering, and find themselves more comfortable with discussions of dialysis withdrawal and care for dying patients. End-of-life care is a constant and high priority agenda item at monthly interdisciplinary dialysis unit team meetings. There has been an evolution in the attitude of staff, their sensitivities to palliative care related issues, and, most importantly of all, a programmatic change in the practices of the dialysis units and the care teams. For example, before the RPCI introduced symptom assessment tools and treatment protocols, attention to patients’ symptoms was somewhat haphazard and idiosyncratic."