Palliative Sedation Explained Carefully

This page is for families facing a decision about palliative sedation for someone near the end of life. It explains what it is, how it differs from ending a life, and what to ask the care team.

Palliative sedation uses sedative medicines to lower a dying person's awareness so that suffering stops. The National Cancer Institute describes it as using "drugs called sedatives to relieve extreme suffering by making a person calm and unaware."

NCI says it may be considered for comfort, or for a problem such as pain that cannot be controlled. NCI's summary for clinicians describes it as a treatment for refractory symptoms at the end of life, meaning symptoms that other treatments have not relieved.

The purpose is relief. The purpose is not death.

A refractory symptom is one that has not been relieved by the usual treatments.

That is not the same as a symptom that is simply hard to treat. A hard symptom may still respond to another approach or to a specialist's help.

Getting this label right matters. Before sedation is offered, ask whether a specialist palliative care team has reviewed the case. Palliative care teams focus on hard-to-control symptoms, and they may have an option that has not been tried.

NCI's summary for clinicians reports that refractory dyspnea is the second most common indication for palliative sedation, after agitated delirium. Delirium is a sudden change in thinking, often with restlessness and distress.

This is the question families ask most, and it deserves a direct answer.

Palliative sedation and euthanasia are different acts with different aims. StatPearls, the clinical reference hosted by the National Library of Medicine, puts the distinction on intent. The intent of palliative sedation is not to shorten life, but to relieve symptoms that standard treatment cannot control. In euthanasia, the intended outcome is the person's death.

NCI states that "studies have not shown that palliative sedation shortens life when used in the last days."

StatPearls notes that clinicians often use an ethical rule called double effect to explain the difference. It allows an action that carries a risk of harm, as long as the harm is not the goal and the good outcome outweighs it.

Applied here, the good outcome is the end of unbearable suffering. The possible unintended outcome is a shorter life. Because that outcome is not the aim, and because there is no other way to stop the suffering, the action is considered ethical. If death were the goal, the rule would not apply.

NCI's clinician summary names three drug groups used for palliative sedation: benzodiazepines, barbiturates, and neuroleptics (antipsychotic medicines). The choice of medicine and dose belongs to the care team, and this page does not give doses.

NCI's clinician summary also describes teams checking how deeply sedated a person is with a scoring scale. Ask how the level of sedation will be chosen, and how often it will be reviewed.

NCI says palliative sedation "may be given on and off, or until death." These two patterns mean very different things for a family. How each is done is set by the team and the hospice or hospital, so ask this team what their plan is.

Respite sedation is temporary. Sedation is given for a time, then lightened so the person can wake. It can leave room to talk again afterward.

Continuous sedation continues until the person dies.

Depth varies too. NCI notes that some people and families want a level of sedation that still lets them communicate. Ask which is planned, and ask whether the plan can be revisited.

StatPearls says every effort should be made to understand the patient's and family's wishes before palliative sedation. It describes a team of different professionals talking through the illness, the symptoms that have not eased, and the pros and cons of sedation. Who may give consent, and what has to be recorded, is set by the law where you live and by the hospice or hospital's own policy. Ask the team how consent works where you are.

If the person can still speak for themselves, they decide. If they cannot, the health care proxy or surrogate named in their advance directive decides, based on what the patient would have wanted.

NCI adds a point worth acting on early: how someone feels about sedation at the end of life may depend greatly on their culture and beliefs. NCI says it is important for the person to tell family and the care team their wishes ahead of time. Families may also need support from the care team and counselors while sedation is used.

Feeding, fluids, antibiotics, and oxygen are usually talked about as their own decisions. Ask the care team plainly: what continues, what stops, and why.

Once sedation starts, the person is calm and unaware, or drowsy, depending on the plan.

In the last days, NCI describes hands and feet turning cold, blotchy, or blue, breathing becoming irregular, and a rattling sound from fluid in the airway. NCI's clinician summary says this rattle is not a sign that the person is short of breath. Ask the hospice nurse to explain anything you see.

NCI also notes that most people can still hear after they can no longer speak. Keep talking. Keep touching. Say what you need to say.

• Which symptom is refractory, and exactly what has been tried for it?
• Has a specialist palliative care team assessed this?
• Is the plan respite sedation or continuous sedation?
• How deep is the sedation meant to be, and can the person be roused to talk?
• Who reviews the dose, and how often?
• What happens to pain medicine, fluids, feeding, and oxygen?
• Is there time first to say goodbye, or to hold a religious or cultural ritual?
• Who do we call at two in the morning if we are worried?

Ask the hospice or palliative care team for their 24-hour number, and use it rather than waiting for the next scheduled visit.

• Call the hospice or palliative care team now if the symptom that sedation was meant to settle comes back — pain, agitation, breathlessness, or distress that the current dose is no longer holding. Doses are meant to be reviewed and adjusted.
• Call the hospice or palliative care team now if the person you are caring for seems to be in pain, or is restless and thrashing while sedated. Call too if their breathing looks laboured in a way that distresses them, rather than just sounding noisy.
• Call the hospice or palliative care team the same day if you think the sedation is deeper than what was agreed, or lighter, or if the plan was respite sedation and nobody has come back to review it.
• Call the hospice or palliative care team the same day if you as a family are struggling, unsure what you are seeing, or unsure whether to give the next dose.

Before calling 911, check what the care plan says, and call the hospice first if you can. Many families have an agreed plan that keeps care at home. If nobody is reachable and you are frightened, call 911 anyway, and tell them about the plan.

• Last Days of Life (PDQ) — Patient Version — National Cancer Institute
• Last Days of Life (PDQ) — Health Professional Version — National Cancer Institute
• Palliative Sedation in Patients With Terminal Illness — StatPearls, National Library of Medicine