Sleep in Advanced Life-Threatening Illness
It is well-known that sleep plays a crucial role in quality of life, and sleep quality and sleep disorders are increasingly being studied in almost all populations of patients and disease states. However, there are little data in the medical literature regarding sleep in the palliative care setting. The ACCP’s Sleep Institute and Palliative and End-of-Life Care Steering Committees have teamed up to review the medical literature and develop a consensus statement on sleep disorder evaluation and management in advanced life-threatening illness. Due to the lack of clinical trial data and the vast array of disease states and comorbidities that impact patients toward the end of life, this is a challenging but highly important and much-needed topic to address.
Symptoms predominantly associated with advanced life-threatening illnesses include anxiety, depression, pain, dyspnea, fatigue, and sleep disturbances. Some of these symptoms are related to the primary disease state and/or comorbidities; however, some can be side effects of therapies, including medications intended to improve quality of life. For example, benzodiazepines may relieve anxiety and help with insomnia, but in patients with sleep apnea or obstruction in the upper airway (eg, head and neck cancers), this may actually worsen breathing at night by increasing upper airway resistance during sleep, leading to sleep fragmentation and poorer sleep quality. Opioids, which are commonly used to treat pain at the end of life, can result in daytime hypersomnolence and, in some patients, may contribute to central sleep apnea and nocturnal hypoxemia.
Sleep disorders and sleep complaints are often underdiagnosed in patients with chronic illnesses. A retrospective review of patients admitted to a palliative care unit showed that patients self-reported an average of four symptoms, with pain being the most commonly reported at 72%. Bowel disturbance (32%), nausea/vomiting (30%), decreased mobility (30%), and decreased appetite (24%) were also highly prevalent. However, if questioned further in a systematic method, patients reported an average of eight more symptoms, with fatigue (56%), sleep problems (36%), and drowsiness (32%) being commonly prevalent symptoms (White. J Palliat Med. 2009;12[5]:447). This suggests that patients have a high prevalence of sleep-related problems that may not be addressed unless specifically asked about by their physician. Another study using the validated Pittsburgh Sleep Quality Index questionnaire in advanced cancer patients on a palliative care ward suggested that 96% of the patients were “poor sleepers.” Poor sleep was associated with worse scores on the Short Form 12 quality of life instrument and was also associated with higher scores of depression and hopelessness (Mystakidou et al. Palliat Med. 2009;23[1]:46).
Many studies regarding end-of-life and palliative care have been done in patients with advanced cancer. Most of these have assessed measures of pain, fatigue, and dyspnea, with few randomized trials to assess methods of controlling these symptoms. While there are increasingly more studies on sleep architecture and sleep-related breathing disorders in patients with chronic diseases, such as severe COPD or heart failure, these studies have not specifically addressed sleep issues in the palliative care setting.
A recent study by Gibbins and colleagues found that 47% of patients with advanced “incurable” cancer reported not sleeping well in spite of an average of 8.2 h of uninterrupted sleep per night. By actigraphy assessment, the sleep efficiency was indeed >90% but showed increased sleep fragmentation. Moreover, those patients with poorer sleep also had increased anxiety and pain (Gibbins et al. J Pain Symptom Manage. 2009;38[6]:860). The association with pain and sleep disruption is well known in the sleep literature. Perhaps improvement of sleep quality could influence pain management or control of mood disorders in advanced illnesses, as well.
Studies in patients with severe pulmonary diseases have objectively shown, through overnight polysomnograms, increased sleep fragmentation and increased “light sleep,” also known as stage N1 or N2 sleep. It is widely known that sleep apnea is highly prevalent in patients with congestive heart failure, and use of nocturnal ventilation can improve sleep apnea and cardiac output in some of these patients. However, utilization of nocturnal ventilation for improving sleep quality for palliative purposes or quality of life in dying patients has not been addressed in a randomized, controlled trial.
There are few major papers from pulmonary organizations discussing palliative care in advanced life-threatening illness. One of these came from the ACCP Ethics Committee, chaired by Dr D. Robert McCaffree, Master FCCP, and was published in 2005 (Selecky et al. Chest. 2005;128[5]:3599). This statement on “Palliative and End-of-Life Care for Patients With Cardiopulmonary Diseases” eloquently addresses a comprehensive care recommendation plan focused around patients with acute devastating or chronically progressive cardiopulmonary diseases, suggesting that the patient’s family should be an integral part of the care plan, in addition to a compassionate health-care provider who is knowledgeable in providing palliative care with a goal toward a multidisciplinary approach of care. The threefold plan for comprehensive care addresses support for the patient and family, care of the patient, and responsibilities of the physician or professional caregiver.
In March 2007, the American Thoracic Society Board of Directors adopted the ATS End-of-Life Care Task Force’s “An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients With Respiratory Diseases and Critical Illnesses” (Am J Respir Crit Care Med. 2008;177[8]: 912). This statement was a comprehensive, educational clinical guideline suggesting implementation of palliative care throughout the course of management in adult and pediatric patients with chronically progressive pulmonary disease. The statement does address the multidisciplinary approach with support for the family and recommendations for education of caregivers in palliative care, in addition to providing some detailed recommendations for treatment of dyspnea, pain, and withdrawal of life-sustaining therapies, in particular, mechanical ventilation.
The most recent paper released by the ACCP is the consensus statement regarding the management of dyspnea in patients with advanced cardiopulmonary disease (Mahler et al. Chest. 2010;137[3]:674).
While these papers are essential and informative, no article has specifically addressed issues regarding the prevalence or impact of sleep disturbances in progressive life-threatening illnesses or the appropriate recognition and treatment of sleep-related problems. The developing consensus statement will topics concerning insomnia, hypersomnia, circadian rhythm abnormalities, restless legs syndrome, pharmacotherapy in palliative care and its effects on sleep, sleep-related breathing disorders, and palliative use of nocturnal noninvasive positive pressure ventilation (NIPPV). These last topics broach controversial issues regarding when to use and discontinue NIPPV that is used for sleep apnea vs palliation of dyspnea. Data are limited, and standard consensus techniques are being used to assist with polling of experts in the field of sleep medicine and palliative care medicine on topics for which there is little clinical evidence.
In summary, sleep disorders are becoming increasingly more respected in the medical community as an important contributor to morbidity and mortality, and the impact of sleep disturbances on quality of life is well-known. In patients with advanced life-threatening illnesses, where the goal is to improve the quality and not quantity of life, it is only appropriate that the medical communities begin to recognize and treat this important aspect of their patients’ health during their greatest time of need.
Dr Laura B. Herpel, FCCP
Assistant Professor of Medicine
Medical University of South Carolina
Division of Pulmonary, Critical Care,
Allergy & Sleep Medicine
Charleston, SC
