Lewis M. Cohen

Depression and suicidal ideation in patients who discontinue the life-support treatment of dialysis.

Objective The objective of this study was to determine the prevalence of major depression and suicidal ideation in patients who stop the life-support treatment of dialysis. Methods The authors prospectively studied 79 subjects who discontinued maintenance dialysis at eight facilities in North America. Structured interviews were conducted with 23 patients and 76 families. Results The prevalence of major depression in the sample was between 5% and 25%, and only 1 of 22 patients considered himself to have the illness of depression. Approximately 12% of the respondents were unsure or believed that discontinuing dialysis was the equivalent of suicide. This belief did not correlate with measures of depression. In comparison with the general population there seemed to be an increased prevalence of past suicide attempts. Conclusions Most patients who decide to stop dialysis do not seem to be influenced by major depression or ordinary suicidal ideation. Although the sample size was small, these results highlight the need to further examine the theoretical framework and terminology of depression and suicide in the context of terminal illness.

Denying the Dying Advance: Directives and Dialysis Discontinuation

A structured interview was administered to a sample of patients on maintenance dialysis and their attending physicians to obtain information on the documentation of their end-of-life treatment preferences. The majority of the patients reported never having considered stopping dialysis, or having discussed with their nephrologist or family the circumstances in which treatment should be discontinued. Only 7 patients (6%) had completed an advance directive; these patients were all men (P = 0.01) and tended to be better educated (P = 0.02). Only one of the nine physicians had completed an advance directive. In most cases, the dialysis patients and their treatment team staff were preoccupied with the struggles of daily life and had avoided or denied considerations of terminal illness and death. The literature on denial, medical illness, and dying is also reviewed as it relates to dialysis patients, end-of-life treatment, and terminal care.

The Renal Palliative Care Initiative.

Despite ongoing technological advances, patients with end-stage renal disease (ESRD) have a mortality rate of approximately 23% per year, and comorbid cardiovascular, cerebrovascular, and peripheral vascular disorders often make life on dialysis an ordeal. This patient population needs an improved approach to symptom assessment and control, as well as advance care planning and high-quality palliative care. Families need support during the lifetime and after the death of their loved ones. To address these needs, the Renal Palliative Care Initiative (RPCI) was instituted at Baystate Medical Center, a large tertiary care hospital, and at eight dialysis clinics in the Connecticut River Valley. With the cooperation of a large nephrology practice, the Western New England Renal and Transplant Associates, a core group of physicians, nurses, and social workers were trained in palliative medicine, and charged with the goals of developing and implementing innovative interventions. The RPCIs programs include symptom management protocols, advance care planning, and bereavement services for families and staff. The Initiative is increasing completion of formal advance directives by the patient population, while staff and families are particularly pleased with annual renal memorial services. The RPCI experience has much to offer the practice of nephrology, and it is relevant to ongoing efforts to extend palliative medicine beyond the traditional focus on cancer and AIDS.

Withholding and Withdrawal from Dialysis: What We Know About How Our Patients Die

Withholding and withdrawal of dialysis has been a reality since dialysis was invented. Only in the past 20 years has it been formally studied, and we still have a great deal to learn. The nephrology community has slowly come to accept that, for some of our patients, not having dialysis is a better option than continuing or initiating therapy. The principles of palliative care throughout the disease trajectory and hospice care at end of life are germane to this population due to its high symptom burden and mortality rate. We review what is currently known concerning patients who choose to withhold or withdraw from dialysis, and the current barriers (and solutions) to providing them with optimal palliative care.

Withdrawal from dialysis: A palliative care perspective.

A retrospective chart review was conducted in this pilot study of 35 patients who withdrew from dialysis and were followed by a palliative care team. Data included etiology of end-stage renal disease, comorbid illnesses, mode of dialysis and duration, survival time after withdrawal, reason for withdrawal, mental competency, symptom management, and the nature of death. Mean survival time was 10 days. The most frequent symptoms following withdrawal were confusion, agitation, pain and dyspnea. 1/3 of the sample were cognitively impaired at the time of the withdrawal decision. 17% experienced suffering during the withdrawal period, 24% had unrelieved symptoms, 19% psychological distress, while just over 1/3 of patients died alone. With the provision of palliative care, symptom prevalence in the last 24 hours dropped from 53 to 20% for pain, 68 to 33% for agitation and 46 to 26% for dyspnea. Opioids and benzodiazepines were used in the treatment of over 90% of patients. Palliative medicine has the potential to improve the care of patients who discontinue dialysis.

A Very Good Death: Measuring Quality of Dying in End-Stage Renal Disease

A case is presented of an exceptionally good death after discontinuation of dialysis, and the authors trace the evolution of their attempts at measuring quality of dying in patients with end-stage renal disease. The Dialysis Quality of Dying Apgar is based on the pediatric tool for measuring the condition of newborn babies. Previous research with termination of dialysis has revealed that staff, patients, and families characterize a good death as being pain-free, peaceful, and brief. The quality of dying tool has corresponding domains to which it adds advance care planning and non-pain symptoms. Quantification of patient deaths combined with descriptive narratives can be used to establish benchmarks for the provision of terminal care. Very good deaths need to be recognized and valued as goals for palliative medicine.

Provocation of Pseudoseizures by Psychiatric Interview during EEG and Video Monitoring

Objective: This paper discusses a new technique for diagnosing pseudoseizures. The technique consists of an intensive psychiatric interview designed to provoke a pseudoseizure during EEG and video monitoring. We wished to determine the overall efficacy of the technique and learn how our patients felt about having undergone the procedure. We were also interested in whether their seizures persisted approximately three years later. Method: We reviewed medical records and conducted telephone interviews with thirty of thirty-two patients who had previously undergone the procedure as part of an evaluation for unusual or intractable seizures. All evaluations had been performed on a university hospital neurology service. The patients were consecutive referrals to the consultative psychiatry service for suspicion of pseudoseizures. Results: Nineteen of the thirty-two patients interviewed had a pseudoseizure under EEG and video monitoring. Of the thirty reached by telephone for follow-up, twenty-two recalled the procedure as helpful or benign. None regarded the overall psychiatric consultation negatively. Among the patients who had exhibited pseudoseizures there was a variety of psychiatric diagnoses with a preponderance of personality disorders. Two thirds of those patients without coexisting epilepsy stopped having seizures or rarely had seizures following their evaluations. Conclusions: The diagnostic technique described here is useful in patients with possible pseudoseizures. It does not appear to be harmful when employed as part of a comprehensive psychiatric consultation. How it may compare with other methods of pseudoseizure diagnosis will have to be determined by further study.

Should there be an expanded role for palliative care in end-stage renal disease?

Purpose of reviewIn this review, we outline the rationale for expanding the role of palliative care in end-stage renal disease (ESRD), describe the components of a palliative care model, and identify potential barriers in implementation. Recent findingsPatients receiving chronic dialysis have reduced life expectancy and high rates of chronic pain, depression, cognitive impairment, and physical disability. Delivery of prognostic information and advance care planning are desired by patients, but occur infrequently. Furthermore, although hospice care is associated with improved symptom control and lower healthcare costs at the end of life, it is underutilized by the ESRD population, even among patients who withdraw from dialysis. A palliative care model incorporating communication of prognosis, advance care planning, symptom assessment and management, and timely hospice referral may improve quality of life and quality of dying. Resources and clinical practice guidelines are available to assist practitioners with incorporating palliative care into ESRD management. SummaryThere is a large unmet need to alleviate the physical, psychosocial, and existential suffering of patients with ESRD. More fully integrating palliative care into ESRD management by improving end-of-life care training, eliminating structural and financial barriers to hospice use, and identifying optimal methods to deliver palliative care are necessary if we are to successfully address the needs of an aging ESRD population.

The elderly patient on dialysis: geriatric considerations

The burgeoning population of older dialysis patients presents opportunities to provide personalized care. The older dialysis population has a high burden of chronic health conditions, decrements in quality of life and a high risk of death. In order to address these challenges, this review will recommend routinely establishing prognosis through the use of prediction instruments and communicating these findings to older patients. The challenges to prognosis in adults with end-stage renal disease (ESRD) include the subjective nature of clinical judgment, application of appropriate prognostic tools and communication of findings to patients and caregivers. There are three reasons why we believe these conversations occur infrequently with the dialysis population. First, there have previously been no clinically practical instruments to identify individuals undergoing maintenance hemodialysis (HD) who are at highest risk for death. Second, nephrologists have not been trained to have conversations about prognosis and end-of-life care. Third, other than hospitalizations and accrual of new diagnoses, there are no natural milestone guidelines in place for patients supported by dialysis. The prognosis can be used in shared decision-making to establish goals of care, limits on dialysis support or parameters for withdrawal from dialysis. As older adults with ESRD benefit from kidney transplantation, prognosis can also be used to determine who should be referred for evaluation by a kidney transplant team. The use of prognosis in older adults may determine approaches to optimize well-being and personalize care among older adults ranging from hospice to kidney transplantation.

Developing a renal supportive care team from the voices of patients, families, and palliative care staff

OBJECTIVE Although half a million Americans suffer from end stage renal disease (ESRD), their quality of end-of-life care has been woefully inadequate. The Renal Supportive Care Team is a demonstration project that is designed to elicit and provide for the needs of dialysis patients and their families throughout the trajectory of their illnesses. METHOD Six focus groups, including medical health professionals, dialysis patients, family members, and bereaved family members, discussed how to promote improved palliative care and encourage hospice referral for patients with ESRD. RESULTS Respondents agreed that there needed to be greater education of both patients and families regarding all aspects of the disease process, open communication, on-going support between patients, families, and the staff, continuity of care, pain control, and assistance with advance care planning. SIGNIFICANCE OF RESULTS Palliative and supportive care issues in ESRD need greater attention.