Palliative Care and Pain Management at the End of Life ___________________________________________
Seizures at the end of life may be managed with high doses of benzodiazepines. Other antiepileptics such as phenytoin (administered intravenously), fosphenytoin (administered subcutaneously), or phenobarbital (60–120 mg rectally, intra- venously, or intramuscularly every 10 to 20 minutes as needed) may become necessary until control is established. A calm and peaceful environment should be maintained for the patient. Family and spiritual leaders should be allowed to carry out traditional rites and rituals associated with death. Palliative Sedation Palliative sedation may be considered when an imminently dying patient is experiencing suffering (physical, psychological, and/or spiritual) that is refractory to the best palliative care efforts. Terminal restlessness and dyspnea have been the most common indications for palliative sedation, and thiopental and midazolam are the typical sedatives used [310; 434; 435]. For patients who have advanced kidney disease, midazolam is recommended, but the dose should be reduced because more unbound drug becomes available [214; 310]. Before beginning palliative sedation, the clinician should consult with a psychiatrist and pastoral services (if appropriate) and talk to the patient, family members, and other members of the healthcare team about the medical, emotional, and ethi- cal issues surrounding the decision [67; 227; 310; 436; 437]. Formal informed consent should be obtained from the patient or from the healthcare proxy. Physician-Assisted Death Physician-assisted death, or hastened death, is defined as active euthanasia (direct administration of a lethal agent with a merci- ful intent) or assisted suicide (aiding a patient in ending his or her life at the request of the patient) [67]. The following are not considered to be physician-assisted death: carrying out a patient’s wishes to refuse treatment, withdrawal of treatment, and the use of high-dose opioids with the intent to relieve pain. The American Medical Association Code of Ethics explicitly states, “Physician-assisted suicide is fundamentally incompat- ible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks” [438]. Position statements against the use of physician-assisted death have been issued by many other professional organiza- tions, including the NHPCO and the AAHPM [439; 440]. The AAHPM states that their position is one of “studied neutral- ity” [439]. The basis for these declarations is that appropriate hospice care is an effective choice for providing comfort to dying patients. In 2010, in a first-of-its-kind comprehensive consensus state- ment, the Heart Rhythm Society in collaboration with the major cardiology, geriatrics, and palliative care societies, emphasized that deactivation of implantable cardioverter- defibrillators is neither euthanasia nor physician-assisted death [441]. The organizations urged clinicians to respect the right of patients to request deactivation.
The 2024 NCCN guidelines advise that a request for hastened death often has important meanings that should be explored, beginning with an assessment to ensure palliative care needs are being met. This may enlarge the range of useful therapeu- tic options and might reduce the patient’s wish to die. It is recommended clinicians explore the reasons for the request for a hastened death and determine the precipitating condi- tions in a joint discussion with patient, family, and caregivers [310]. During discussion, issues to consider include individual values, purpose, and meaning; worries about caregiver burden and abandonment; and views of spiritual/existential suffering (with consideration of spiritual care consultation). It is impor- tant to reassess symptom management and whether there are unrecognized patient issues, such as depression, anxiety, and delirium. It may be helpful to clarify the legal/ethical distinc- tions among assisted death, treatment withdrawal, and aggres- sive symptom management [310]. Some states have enacted assisted death statutes. State laws vary, and knowledge of your local statutes is necessary. THE FAMILY’S NEEDS Ongoing communication with family members is essential to ensure their well-being as their loved one dies. The healthcare team should discuss what will happen over the course of dying so the family can be better prepared for symptoms such as altered breathing patterns and sounds, terminal delirium, and unconsciousness [6; 310; 430]. The family should be reassured that what they may think the patient is experiencing is not the patient’s actual reality. The altered breathing patterns that are present as death is imminent are distressful for family members, as they believe that the patient is experiencing a sense of suffocation. Also distressful to family is the sound of the death rattle. The healthcare team should assure family that these signs do not indicate that the patient is suffering and explain that additional therapy will not be of benefit. Families often misinterpret the early signs of terminal delirium as signs of uncontrollable pain. However, if pain has been adequately managed throughout the delivery of palliative care, such pain will not begin during the last hours. As the patient slips in and out of consciousness, family members may become increasingly distressed about not being able to communicate anymore with their loved one. Although it is unknown what a dying patient can hear, other experiences in medicine sug- gest that awareness may be greater than the ability to respond. Family members should be encouraged to continue talking with their loved one to help them attain a sense of closure. Despite the best efforts to prepare the family, reactions are unpredictable when death occurs. The clinician should take time to answer questions from family members, including children, and perhaps provide information on the physi- ologic events associated with death [67]. For family members who were not present during the death, the clinician should describe the event, while reassuring them that the patient died peacefully.
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MDCA1525
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