Table 7. Potentially helpful alternative interventions for EOL symptoms 72
Intervention
Applications/indications
Environmental modifications 73,74 Support normal sleep/wake cycles Structure activities to reduce boredom
Reduce unnecessary stimulation Create home-like environment
Music therapy 75
Receptive music therapy (listening to music by a therapist who sings or selects recorded music for the recipients). Active music therapy (recipients engage in music-making by playing small instruments, with possible encouragement to improvise with instruments, voice, or dance.) Also music played when doing routine daily care etc.
Bright light therapy 76
Exposure to simulated or natural lighting to promote circadian rhythm synchronization.
Aromatherapy 77
Use of plant and herb-based essential oils (indirect inhalation via room diffuser, direct inhalation, aromatherapy massage, or applying essential oils to the skin). Several small studies suggest that the presence of a dog reduces aggression and agitation, as well as promoting social behavior in people with dementia.
Pet therapy 76,78
Other integrative and behavioral approaches found to be helpful for managing end-of-life pain are massage therapy and acupuncture. 81 Managing Pain in Intensive Care Units Several studies show that most US adults wish to die at home. 82 And yet more than half of deaths occur in hospitals, most with ICU care. 83 When curative approaches are not expected to be successful, a transition to primary comfort- focused care and the withdrawal of ineffective or burdensome therapies is often the compassionate course. Although guidelines and detailed strategies have been developed for analgesic therapy during the removal of life-sustaining interventions, communication about what to expect and how things may proceed remain paramount to negotiating this care transition. 84 Some patients and families may be able to have meaningful interactions at the end of life, and thus brief interruption of sedatives and analgesics may be reasonable. Rarely are dying ICU patients able to self- report information about their pain. 84 Thus it is incumbent on the critical care health professionals, perhaps with the assistance of the patient’s family members, to assess pain without self-report input from the patient. Two pain assessment instruments have been validated for use in the ICU setting: the Behavioral Pain Scale 85 and the Critical-Care Pain Observation Tool. 86 Both tools describe specific observations that the patient’s ICU care providers (including family members or loved ones) can make that, when present, could indicate the patient is experiencing pain such as grimacing, rigidity, wincing, shutting of eyes, clenching of fists, verbalization, and moaning. 87 Reports by family members or other people close to a patient should not be overlooked. In the Study to Understand Prognosis and Preference for Outcomes and Risks of Treatment (SUPPORT) study, surrogates for patients who could not communicate verbally had a 73.5% accuracy rate in estimating presence or absence of the patient’s pain. 88
Concerns about adequate hydration are frequently misplaced. Relative dehydration can be beneficial during the terminal phase for the following reasons: 39 • By decreasing urine output urinary incontinence or difficulties of using a bedpan or commode are reduced • Reduced gastrointestinal secretions may reduce nausea and vomiting • In cancer patients, pain may be improved by a reduction in tumor edema • Reduction in oropharyngeal and pulmonary secretions may lead to reduced airway congestion and diminished pooling of secretions the patient cannot clear on his or her own Nausea and vomiting Multiple neurotransmitter pathways in the brain and gastrointestinal tract mediate nausea and vomiting, both of which are common in EOL care. Some therapies for nausea (e.g., haloperidol, risperidone, metoclopramide, and prochlorperazine) target dopaminergic pathways to inhibit receptors in the brain’s chemoreceptor trigger zone. 89 Serotonin 5-HT 3 receptor antagonists such as ondansetron and palonosetron have been used to treat chemotherapy and radiation therapy related nausea, although in studies of patients with EOL-related nausea, these agents have not been shown superior to older dopaminergic agents. 36 Anticholinergic medications such as meclizine or transdermal scopolamine can be added if a vestibular component of nausea is present or suspected. Synthetic cannabinoid agents (e.g., dronabinol) and medical marijuana (in states where it is approved for medical use) may be considered as second-line agents for nausea control, although they should be used with caution because they can provoke delirium and dosing of medical marijuana may be imprecise. Vomiting can occur due to mechanical bowel obstruction, which is common with pelvic and gastrointestinal cancers. Management with an antiemetic (e.g., haloperidol) as well as corticosteroids and analgesics is recommended. 90
Managing common EOL symptoms Effective symptom control can allow patients at the end of their lives to pass through the dying process in a safe, dignified, and comfortable manner. When possible, proactive regimens to prevent symptoms should be used since it is generally easier to prevent symptoms than treat acute symptoms. Because disrupted swallowing function and changes in levels of consciousness can affect patients’ ability to swallow pills, medications must be provided in formulations that are safe and feasible for administration. Concentrated sublingual medications, dissolvable tablets, transdermal patches, creams or gels, and rectal suppositories can be used in patients with impaired swallowing or decreased responsiveness. Nutrition and Hydration The provision of nutrition and hydration can become a clinical challenge at the end of life and can be directly related to the use of analgesics, particularly in decisions about the preferred route of analgesic administration. As with decisions about analgesia itself, the fundamental question regarding various alternatives for nutrition or hydration is whether the potential benefits outweigh the burdens from the patient’s perspective. The patient’s own expression of interest should be the primary guide. If a dying patient shows interest in either food or fluids, they should never be withheld unless providing them clearly causes greater suffering (i.e., in patients for whom oral feeding causes significant discomfort). 39 In most cases, patients either do not show an active interest in food or are satisfied with very small amounts of specific foods (such as sweet custards or ice cream) which are well- tolerated. The forced administration of nutrients, either parenterally or through a nasogastric or gastrostomy tube, has little or no benefit to most patients in the last days or weeks of life, and the placement or continuation of an intravenous line or enteral feeding tube can be burdensome. Enteral feeding tubes used during the terminal phase of illness are often more useful as a means of administering medications than nutrients.
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