Palliative Care in End-Stage Neurological Disease

Neurological disorders are among the leading causes of morbidity and death worldwide. Although stroke is the third leading cause of death, after heart disease and cancer, in the United States, other neurological diseases have a more chronic course that leads to protracted disability, morbidity, and death. Unfortunately, for many of these disorders, such as Parkinson’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS), no cure is currently available. Patients suffer from dysarthria, dysphagia, muscle spasm, bladder and bowel difficulties, pain syndromes, and fatigue. Adequate symptom management and palliative care have the potential to maintain good quality of life for patients for as long as possible and ease the burden on both caregivers and patients. This chapter outlines the principles of clinical symptom management for some of the most important neurological diseases, specifically ALS, stroke, MS, and Parkinson’s disease.

Challenging Conversations in Palliative Care

Palliative care specialists manage a variety of difficult medical and psychosocial situations across a wide spectrum of medical conditions. Patient–physician communication is a critical element for the provision of quality palliative care and improving patient satisfaction. It is essential for palliative care clinicians to be aware of the various challenging conversions they will encounter in their routine clinical care and to develop the necessary skill set to adequately address these. Several communication techniques, such as a sitting posture during a conversion, proper use of silence, listening, and recognizing emotional movements and responding to them, are important so as to improve clinical care for patients and their families.

Cultural Issues in Palliative Care

Culture play a significant role in the care of patients receiving Palliative care. Understanding and managing cultural differences in end-of-life care is important as misunderstanding can result in under-treatment and unnecessary suffering for the patient and their care providers. Therefore better understanding can improve patient–physician communication and potentially improve patients’ quality of life, coping, and facilitate patients to make informed decisions and set appropriate priorities with regard to treatment and end-of-life care. This chapter discusses key cultural issues in palliative care, including the concepts of nondisclosure, the importance of the use of a medical interpreter, and the importance of an interdisciplinary team.

Palliative Care Emergencies

Palliative care emergencies are both cancer and non-cancer-related events that demand immediate remedy or action because they cause acute exacerbation of symptoms that affect quality of life. Decision-making with regard to the type of treatment for these emergencies is critical and should be based on (a) reversibility of the problem, (b) improvement/maintenance of the patient’s quality of life with reversal, (c) the patient’s general condition and prognosis, (d) patient and family goals, and (e) the risk and benefit of treatment versus distress of symptoms. Common emergencies include spinal cord compression, hypercalcemia, impeding pathological fracture, superior vena caval syndrome, seizures, bleeding, and uncontrolled symptoms such as pain and dyspnea.

Nausea and Vomiting

Nausea is an unpleasant sensation of being about to vomit, can occur alone or can accompany vomiting, dyspepsia, or other gastrointestinal symptoms. It is common symptoms in patients receiving palliative care and is associated with substantial physical and psychological distress and worsening of quality of life. In cancer patients, cancer treatments and opioids are the most common causes. Management include supportive measures such as maintaining proper oral hygiene, frequent small volume food and fluid intake at regular intervals, intravenous fluids if appropriate, and discontinuation of unnecessary medications. Specific treatment should target the underlying cause, e.g., aggressive bowel regimen for opioid related constipation, and 5HT3 receptor antagonists for chemotherapy induced nausea.

Sleep Disturbance in Palliative Care

Sleep disturbance is a persistent source of suffering in palliative care patients. Symptoms such as difficulty falling asleep, staying asleep, early awakening, or nonrestorative sleep are all indicative of sleep disorders. Poor sleep can have consequential effects on perception of pain, fatigue, mood, and quality of life. It is not only a prevalent symptom in the primary care population but also may in fact affect more than 60% of the palliative care population. In addition to the complexities of treatment, insomnia often serves as a red herring to alarm physicians of underlying conditions. Therefore, it is essential that palliative care physicians maintain a high index of suspicion for such confounding conditions as restless leg syndrome, sleep apnea, and delirium. This chapter highlights the intricacies of sleep disturbance and focuses on the most common patient presentations.

Anorexia–Cachexia Syndrome and Hydration

Cachexia is a complex multiorgan syndrome involving multiple biological mechanisms and found in many seemingly disparate diseases. Cachexia is characterized by weight loss and unresponsiveness to nutritional support alone. It is caused by both primary and secondary factors. Primary cachexia is a result of disease–host interactions causing alterations in pro-inflammatory and neuroendocrine factors. These lead to inflammatory and metabolic changes, including increased systemic inflammation, acute phase response, proteolysis, lipolysis, and resting energy expenditure and decreased protein synthesis, lipogenesis, and appetite. Secondary causes of cachexia exacerbate poor appetite and decrease food intake. These secondary causes include pain, nausea, taste alteration, depression, comorbidities, and gastrointestinal obstruction by the tumor. No single pharmacological treatment is consistently effective for cachexia. Megestrol and corticosteroids improve appetite and weight, not lean body mass. Cannabinoids and growth hormone benefit patients with HIV, and ghrelin and ghrelin mimetics have recently demonstrated efficacy in cancer cachexia.

Principles of Assessment and Pain Management and Procedures in Pain Management

Pain has been a major concern in both inpatient and outpatient settings, particularly in patients with advanced diseases. In recent years, considerable progress has been made in the understanding of both acute and chronic pain mechanisms. The bio psychosocial experience of pain, whether it is a mixture or a single presentation of it’s different components, physical, psychological, social, or spiritual, may present a real challenge to both the patient and the treating team, and thus a clear understanding of it’s complexity, is of prime importance. Effective pain management involves an interdisciplinary approach using multimodal techniques, with the goal being to relieve the patient’s suffering. This chapter discusses basic concepts related to pain and its approach in routine palliative care practice.

Research in Terminally Ill Patients

It is important to conduct quality palliative care research so as to improve care in this distressed population. However, research in palliative care is challenging due to the high symptom burden and issues related to it, including poor accrual, and higher dropout rates compared to those of patients with chronic disease states. Additionally, patients receiving palliative care are considered a vulnerable population due to the presence of severe symptom distress and limited treatment options available. It is therefore important to address all ethical issues related to participation in a clinical trial. This chapter reviews key concepts with regard to research in terminally ill patients.

Palliative Care in End-Stage Chronic Obstructive Pulmonary Disease

Patients with end-stage chronic obstructive pulmonary disease (COPD) experience high symptom burden due to severe dyspnea, fatigue, anxiety, depression, disability, and social isolation, resulting in poor quality of life. The caregiving burden for the family is also severe. Despite high symptom burden, because of limited access and difficulty with prognostication, the quality of care for patients with end-stage COPD who receive palliative care compares poorly to the care received by patients with cancer, and the proportion of COPD patients who receive palliative care is much lower than that of cancer patients. Therefore, patients with COPD receive less palliative care and die following more aggressive treatments at the end of life compared to patients with lung cancer, despite having the same preferences for palliative care. This chapter discusses the key issues related to end-stage COPD, including symptom assessment, management, and hospice eligibility.