Abstract and Introduction
Abstract
The primary purpose of this investigation was to document the level of relief that patients with end-stage renal disease treated with hemodialysis obtain from their symptoms. Anecdotal clinical observations suggest that these patients' symptoms are not effectively relieved and that they would benefit from palliative care services that specialize in symptom management. Findings support this observation and indicate that patients' quality of life is diminished in the presence of symptoms that are neither effectively nor satisfactorily relieved. This research focuses attention on inequities present in the current healthcare system that prevent dialysis patients from accessing specialized services that have helped to improve the lives of patients with other chronic illnesses. This study supports the recommendations made by the Robert Wood Johnson Foundation End-stage Renal Disease Workgroup urging the incorporation of palliative care into routine nephrology practice.
Introduction
According to the World Health Organization (WHO), palliative care is the total care of patients whose disease is not responsive to curative treatment and includes control of pain, other symptoms, and psychological, social, and spiritual problems. Palliative care is not limited to patients at the end of life but applies earlier in the course of illness, provided in conjunction with active treatment. The ultimate goal of palliative care is the best possible quality of life (QOL) for patients and families experiencing illness that is both chronic and life-threatening.
Patients with end-stage renal disease (ESRD) are especially appropriate candidates for palliative care as defined by the WHO. Patients who have irreversible kidney failure face certain death unless they receive active treatment in the form of renal replacement therapy (RRT). Even with RRT, patients live with the reality of a shortened lifespan. Data provided by the United States Renal Data System indicate that expected remaining lifetimes for patients with ESRD are approximately one-fifth that of individuals of the same age and gender in the general population. Incident ESRD patients have a 78% chance of surviving 1 year after onset of treatment. Survival rate falls to 38% within 5 years. These patients also experience a multitude of symptoms as a result of renal disease and its treatment. They frequently suffer from comorbid conditions that further add to symptom burden. ESRD and its treatment necessitate sweeping changes in lifestyle that impact every aspect of life and challenge the ability of patients and families to maintain an acceptable QOL. All of these factors suggest that patients with ESRD would benefit from a palliative care program that includes symptom management, advance care planning, psychosocial and spiritual support, and assistance with decision making related to end-of-life issues.
This recommendation is strongly endorsed in a recent report by the ESRD Workgroup, a subgroup of The Robert Wood Johnson Foundation (RWJF) program Promoting Excellence in End-of-Life Care. After a review of the current state of care, the subgroup concluded that there is an urgent need for palliative care in the ESRD population. Palliative care was acknowledged as an integral component of comprehensive care, not an adjunct.
However, ESRD patients are infrequently the recipients of palliative care services. According to the National Hospice and Palliative Care Organization, cancer diagnoses accounted for 46% of hospice admissions in 2004. Patients with ESRD accounted for only 3.1% of non-cancer admissions. This statistic is significant because most palliative care is currently offered through hospice organizations. Failure to refer patients with ESRD to hospice is partially due to the traditional view of palliative care as a service limited to patients who opt to forgo aggressive, curative treatment. In this paradigm, curative care and palliative care are viewed as two distinct entities, such that active treatment ends when palliative care begins (see Figure 1). Because most patients with ESRD wish to continue active treatment, palliative care is not considered a routine part of care in this model.
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Figure 1.
Traditional model of palliative care. (Modified from World Health Organization. Cancer Pain Relief and Palliative Care: Report of a WHO expert committee (Technical reports no. 804). Geneva: WHO; 1990.)
Active treatment and palliative care need not be mutually exclusive, especially in a disease that is at the same time chronic and life-limiting. According to a contemporary, integrated model, active treatment and palliative care are offered concurrently (see Figure 2). Use of palliative care strategies begins at the time of diagnosis of an incurable illness and increases as the patient nears death. This model is especially relevant to the care of cancer patients, who begin active treatment with hope of a cure and end life with hope of a comfortable death.
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Figure 2.
Integrated model of palliative care. (Modified from World Health Organization. Cancer Pain Relief and Palliative Care: Report of a WHO expert committee (Technical reports no. 804). Geneva: WHO; 1990.)
A modification of the integrated model of palliative care is suggested for the ESRD population (see Figure 3). These patients face numerous threats to physical and emotional well-being from the time of diagnosis. Patients with ESRD, particularly individuals treated with dialysis, require active treatment to sustain life. They live with the knowledge that their survival depends on a machine and viable dialysis access. They experience multiple unpleasant symptoms. Lifestyle and family relationships are dramatically altered as patients and families strive to cope with the illness and treatment demands. Patients and their families frequently experience diminished QOL because of the impact of the illness on every aspect of life. In the revised version of the integrated model, it is proposed that active treatment and palliative care share equally in the treatment plan, provided concurrently from the time of diagnosis and onset of treatment to death.
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Figure 3.
Suggested model of palliative care for ESRD patients.
The concurrent model of palliative care for the ESRD population has yet to be accepted and funded in the current healthcare system. As noted previously, most palliative care services are offered through hospice and still tend to be an option confined to end of life. Reimbursement for hospice care is tied to criteria that limit the ability of patients with ESRD to take advantage of these services. To make use of the Medicare hospice benefit, patients must have a 6-month prognosis and forgo "aggressive" treatment. Although the Healthcare Financing Administration requires that prognosis be based only on the physician's best knowledge of the disease course, it is difficult to anticipate length of survival in this population. Dialysis is considered an active, aggressive treatment that patients must decline to qualify for hospice care. Most hospice agencies are unable to absorb the expense of treatments and do not admit patients who continue dialysis. Consequently, patients with renal failure are rarely referred to hospice for palliative care unless they suffer from a comorbid condition (eg, congestive heart failure or chronic obstructive pulmonary disease) that qualifies as the primary disease.
Of particular concern is the inability of ESRD patients to access specialized care that focuses on symptom management. This situation is especially problematic for patients treated with hemodialysis (HD), the largest subgroup of patients receiving RRT. Research indicates that these patients suffer from a multitude of troublesome symptoms. Fatigue is often the most prevalent symptom reported. Other symptoms that occur with regularity include itching, headache, sleep disturbance, cramps, pain (eg, joint, chest, abdominal), shortness of breath, nausea/vomiting, restless legs, numbness in the extremities, and muscle weakness. Although the symptoms typically present in this patient population are known, the extent to which they are relieved when they occur remains unclear.
Anecdotal clinical observations suggest that symptoms are often not effectively controlled and that healthcare providers' symptom management efforts are at times inadequate and poorly informed. No available research documents the level of relief that HD patients obtain from their symptoms and the influence of level of relief on QOL. The ESRD workgroup urges healthcare providers to increase efforts to improve the lives of patients with renal failure through integration of palliative care within dialysis practice. The research community is also challenged to help accomplish this goal through empirical validation of the benefits of palliative care to ESRD patients. In response to this challenge, this investigation focuses on the symptom management component of palliative care. The study was designed to answer the following questions:
What are the prevalence and characteristics of symptoms commonly experienced by patients on HD?
What level of relief do patients on HD obtain from commonly occurring symptoms?
What is the relationship between symptoms, level of symptom relief, and QOL?
Of symptoms, level of symptom relief, and satisfaction with symptom relief, which is the strongest predictor of QOL?