Palliative sedation
In medicine, specifically in end-of-life care, palliative sedation is the palliative practice of relieving distress in a terminally ill person in the last hours or days of a dying patient's life, usually by means of a continuous intravenous or subcutaneous infusion of a sedative drug, or by means of a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route.
Palliative sedation is an option of last resort for patients whose symptoms cannot be controlled by any other means. It is not a form of euthanasia or physician-assisted suicide, as the goal of palliative sedation is to control symptoms, rather than to shorten or end the patient's life.
Palliative sedation is legal everywhere and has been administered since the hospice care movement began in the 1960s. The phrase 'terminal sedation' was initially used to describe the practice of sedation at end of life, but was changed due to ambiguity in what the word 'terminal' referred to. The term 'palliative sedation' was then used to emphasize palliative care. The practice of palliative sedation has been a topic of debate and controversy because many view it as a form of slow euthanasia or mercy killing, associated with many ethical questions. Discussion of this practice occurs in medical literature, but there is no consensus because of unclear definitions and guidelines, with many differences in practice across the world.
General Practice
Palliative care is aimed to relieve suffering and to improve the quality of life for patients, as well as their families, with serious and/or life-threatening illness in all stages of disease. It can be provided either as an add-on therapy to the primary curative treatment or as a monotherapy for patients who are on end-of-life care. In general, palliative care focuses on managing symptoms, including but not limited to pain, insomnia, mental alterations, fatigue, difficulty breathing, and eating disorders. In order to initiate the care, patient self-reported information is considered the primary data to assess the symptoms along with other physical examinations and laboratory testes. However, in patients at the advanced stage of the disease with potential experience of physical fatigue, mental confusion or delirium which prevent them from fully cooperating with the care team, a comprehensive symptom assessment can be utilized to fully capture all symptoms as well as their severity.There are multiple interventions that can be used to manage the patient conditions depending on the frequency and severity of the symptoms, including using medications, physical therapy/modification, or reversal of precipitating causes. Palliative sedation is often the last resort if patient is resistant to other managing therapies or if the therapies fail to provide sufficient symptom relief.
Palliative sedation is often initiated at the patient's request. It can also be initiated by the physician who would discuss the option with the patient and family. Palliative sedation can be used for short periods with the plan to awaken the patient after a given time period, making terminal sedation a less correct term. The patient is sedated while symptom control is attempted, then the patient is awakened to see if symptom control is achieved. In some cases, palliative sedation is begun with the plan to not attempt to reawaken the patient.
One such common example is a patient with an enlarging cancer in the throat that compresses the trachea in a patient who does not want intubation or a tracheostomy, so that eventually symptom control is impossible. Instead of experiencing death by suffocation, once symptoms are intolerable some patients will request palliative sedation to ease their symptoms as death approaches.
Some emergency instances in which palliative sedation should be considered when the patient experiences: massive hemorrhage, asphyxiation, an overwhelming pain crisis, and severe terminal dyspnea.
Patient assessment and Obtaining Consent for Palliative Sedation
Though patients may receive palliative care, pharmacologically decreasing a patient's consciousness may be the only remaining option to help alleviate intolerable disease symptoms and suffering. Prior to receiving palliative sedation, patients should undergo careful consideration with the patient and their health care team to make sure all other resources and treatment strategies have been exhausted. In the case the patient is uncommunicable due to severe suffering, the patient's family member should be consulted as the decreasing the distress of family members is also key component and goal of palliative care and palliative sedation.The first step in consideration of palliative sedation is assessment of the patient.
There are several states that a patient may be in that can make palliative sedation the preferred treatment, including but not limited to physical and psychological pain and severe emotional distress. More often than not, refractory or intolerable symptoms give a more sound reason to pursue palliative sedation. Though the interdisciplinary health care team is there to help the patient make the most sound medical decision, the patient's judgement is considered to be the most accurate in deciding whether or not their suffering in manageable.
According to a systematic review encompassing over thirty peer-reviewed research studies, 68% of the studies used stated physical symptoms as the primary reason for palliative sedation/ The patients involved in the included studies were terminally ill or suffering from refractory and intolerable symptoms. Medical conditions that had the most compelling reasons for palliative sedation were not only limited to intolerable pain, but include psychological symptoms such as delirium accompanied by uncontrollable psychomotor agitation. Severe trouble breathing or respiratory distress were also considered a more urgent reason for pursuing palliative sedation. Other symptoms such as fatigue, nausea, and vomiting were also reasons for palliative sedation.
Once assessment is completed and palliative sedation has been decided for the patient, a written consent for administration to proceed must be given by the patient. The consent must state their agreement for sedation and lowering their consciousness, regardless of the patient's stage in illness or the treatment period of palliative sedation. In order to make a decision, the patient must be sufficiently informed of their disease state, the specificities and implications of treatment, and potential risks they may face during the treatment. At the time of consent, the patient should fully be aware of and understand all necessary legal and medical consequences of palliative sedation. It is also critical that the patient is making the decision upon their own free will, and not under coercion of any sort. The only exception where patient consent is not obtained would be in emergency medical situations where the patient is incapable of making a decision, in which the patient's family or caregiver must give the consent after adequate education, as the patient would have been given.
Continuous v. Intermittent Palliative Sedation
Palliative sedation can be administered continuously, until the patient's death, or intermittently, with the intention to discontinue the sedation at an agreed upon time. Although not as common, intermittent sedation allows family members of the patient to gradually come to terms with their grief and while still relieving the patient of their distress. During intermittent palliative sedation, the patient is still able to communicate with their family members. Intermittent sedation is recommended by some authorities for use prior to continuous infusion to provide patient with some relief from distress while still maintaining interactive function.Sedative Medications
Sedating Agents
Benzodiazepines: This a drug class that works on the central nervous system to tackle a variety of medical conditions, such as seizure, anxiety, depression. As benzodiazepines suppress the activities of nerves in the brain, they also create a sedating effect which is utilized for multiple medical procedures and purposes. Among all benzodiazepine agents, Midazolam is the most frequently used medication for palliative sedation for its rapid onset and short duration of action. The main indication for the use of Midazolam in palliative sediation is to control delirium and difficulty breathing to minimize the distress as well as prevent the exacerbation of these symptoms.Opioids: Opioid agents also work on the receptors in the central nervous system to relieve pain, induce sedation or drownsiness. However, it is more frequently used as a pain management therapy rather than a sedating agent and should not be discontinues even when sedating effect is achieved.
Even though these sedating agents provide a comforting effect for the patient, there are risks of substance abuse and diversion. Therefore, in order to both maintain the quality of care and prevent the risk of drug abuse, the Clinical Practice Guidelines for Quality Palliative Care from the National Consensus Project recommends a comprehensive assessment of symptoms prior to the initiation of pharmacological therapy, on-going monitor of both efficacy and toxicity of those agents alongside with patient and family education.
Administration and Monitoring
Palliative sedation is administered commonly in the inpatient setting, but also reported to be performed in home care settings. The medication prescribed for palliation will need dose titration to initially manage the refractory symptoms and relieve suffering, and therapy will continue to maintain adequate effect. Sedation administration can be both continuous and intermittent, and the route chosen may be intravenous, intramuscular, subcutaneous, or rectal, depending on the patient. When breakthrough symptoms occur, the patient will need emergency bolus therapy to maintain symptom management. Both mild or deep levels of sedation may be used to provide relief from suffering, with deeper levels used when death is imminent and a catastrophic event has occurred.The patient will be monitored during palliative sedation to maintain adequate symptom relief, but the following clinical situations will determine a need for dose titration:
- Patient is at end-of-life: Vitals are not monitored except for respiratory rate to assess respiratory distress and tachypnea. The goal is to achieve comfort, so downward titration of sedation is not recommended due to risk of recurrent distress.
- Patient is nearing end-of-life: Vitals such as heart rate, blood pressure, and oxygen saturation, are monitored to maintain physiological stability through sedation. Depending on the risk of patient to have respiratory depression or become unstable, the treatment dose may need to be adjusted or a benzodiazepine antagonist may be administered.
- Suffering managed and symptom controlled: Sedation may be carefully lowered for lucidity. This would provide possibility of reevaluating the patient's preferences for care or allow patient-family communication. If lucidity is not re-established, symptoms may arise and death prevent further care.
Discomfort
Nutrition and Fluids
As patients undergoing terminal sedation are typically in the last hours or days of their lives, they are not usually eating or drinking significant amounts. There have not been any conclusive studies to demonstrate benefit to initiating artificial nutrition or artificial hydration. There is also a risk that IV fluids or feedings can worsen symptoms, especially respiratory secretions and pulmonary congestion. If the goal of palliative sedation is comfort, IV fluids and feedings are often not consistent with this goal.A specialized rectal catheter can provide an immediate way to administer small volumes of liquids for patients in the home setting when the oral route is compromised. Unlike intravenous lines, which usually need to be placed in an inpatient environment, the rectal catheter can be placed by a clinician, such as a hospice nurse or home health nurse, in the home. This is useful for patients who cannot swallow, including those near the end of life.
Before initiating terminal sedation, a discussion about the risks, benefits and goals of nutrition and fluids is encouraged, and is mandatory in the United Kingdom.
Sedation vs. Euthanasia
Titrated sedation might speed death but death is considered a side effect and sedation does not equate with euthanasia.The primary difference between palliative sedation, relief of severe pain and symptoms, and euthanasia, the intentional ending of a patient's life, is both their intent and their outcome. At the end of life sedation is only used if the patient perceives their distress to be unbearable, and there are no other means of relieving that distress. The intended goal is to provide the patient some relief of their suffering through the use benzodiazepines and other agents which inadvertently may increase the risk of death. Studies have been conducted however, showing that the risk of death through palliative sedation is much lower than earlier perceived. This has raised the argument that palliative sedation does not cause or hasten death and that a patient's death following palliative sedation is more likely to be due to their disease - the measure of success of palliative sedation remains relief of a patient's symptoms until their end of life. On the other hand, euthanasia is performed with the intent to permanently relieve the patient of their pain through death - the measure of success being the patient's death.
In palliative care the doses of sedatives are titrated to keep the patient comfortable without compromising respiration or hastening death. Death results from the underlying medical condition. For more information on the palliative care use of sedatives and the safe use of opioids see Opioids.
Patients only have the right to refuse treatments in living wills; they cannot demand life saving treatments, or any treatments at all. However, once unconsciousness begins, as the patient is no longer able to decide to stop the sedation or to request food or water, the clinical team can make decisions for a patient. A Living Will, made when competent, can, under UK law, give a directive that the patient refuses 'Palliative Care' or 'Terminal Sedation', or 'any drug likely to suppress my respiration'.
Physician-Assisted Suicide
As of 2020, Assisted suicide in the United States, otherwise known as medical aid in dying, is legal in ten jurisdictions.Epidemiology
Prevalence of Palliative Sedation
In a review of research articles on various aspects of palliative care, the prevalence of palliative sedation was reported as highly varied. In palliative care units or hospice, the prevalence ranged from 3.1%-51%. In the home care setting, two Italian studies reported a prevalence of 25% and 52.5%. Hospital-based palliative support teams vary in prevalence, with reports of 1.33% and also 26%. Different countries also report large differences in prevalence of palliative sedation:| Country | Prevalence |
| Netherlands | 10% |
| Belgium | 8.2% |
| Italy | 8.5% |
| Denmark | 2.5% |
| Switzerland | 4.8% |
| Sweden | 3% |
A 2009 survey of almost 4000 U.K. patients whose care had followed the Liverpool Care Pathway for the Dying Patient found that while 31% had received low doses of medication to control distress from agitation or restlessness, only 4% had required higher doses.
Almost half of the studies reviewed differentiated intermittent versus continuous palliative sedation. The prevalence of intermittent sedation was 30% -67% of cases and continuous sedation was 14-68% of cases. Patients starting intermittent sedation may progress to use of continuous sedation in 10 - 27% of cases. The prevalence of mild versus deep sedation was also reported: one study reported 51% of cases used mild sedation and 49% deep sedation; a second study reported 80% of cases used mild sedation and 20% deep sedation.
Survival of patients
There are reports that after initiation of palliative sedation, 38% of patients died within 24 hours and 96% of patients died within one week. Other studies report a survival time of < 3 weeks in 94% of patients after starting palliative sedation. Some physicians estimate that this practice shortens life by ≤24 hours for 40% of patients and > 1 week for 27% of patients. Another study reported patients receiving sedation in their last week of life survived longer than those who did not receive sedation, or only received sedation during last 48 hours of life.According to 2009 research, 16.5% of all deaths in the United Kingdom during 2007–2008 took place after continuous deep sedation.
History of Hospice
U.S. Hospice Care Movement
The Hospice Care Movement began in the United States during the 1960s and was influenced heavily on the model published by St. Christopher's Hospice of London located in Great Britain. Despite differing setting, services, and staffing, the U.S. hospice care movement still sought to maintain the goals and philosophy of St. Christopher's model which centered on symptom control to allow the patient to die with freedom, rather than attempting curative treatment. Hospice care emphasizes palliative, rather than curative, treatment to support patients during end-of-life care when all other alternatives have been exhausted. It differs vastly from other forms of healthcare because both the patient and the family are included in all decision-making and aims to treat the individual, not the disease.The first Hospice in the United States, Connecticut Hospice, was founded by Florence Wald and opened in 1974. Supporters of the movement faced many challenges early on, the biggest being the lack of insurance coverage for hospice care services. Initiatives to increase public awareness of the movement were created to combat this obstacle and supply the movement with public funding in order to maintain their services. One of the greatest accomplishments made by the movement was in the inclusion of hospice care in services covered under Medicare in 1982. This victor prompted the creation of National Hospice Week by President Reagan to take place from November 7–14 as a form of recognition to the vital impact nurses and caregivers have on these patients and their families. Less than five decades after the fist hospice program began, we now see over 4,000 programs in place under the umbrella of a multi-billion dollar industry. The cumulative budget for hospice programs nationwide increased from 10 million in the late 1970s, to 2.8 billion dollars in 1995, and 10 billion in 2008.