Palliative care is the whole of care in the palliative phase. Palliative sedation can be part of that. Palliative sedation relieves suffering, but does not shorten life. Palliative sedation occurs in one in eight people in the Netherlands, around 17,000 times a year. Assisted suicide and euthanasia are interventions that can be performed at the request of the patient to end life. Euthanasia and suicide assistance occur around 4,000 times a year. Stopping eating and drinking is an alternative in some situations where the patient is in control.
Palliative sedation means: lowering consciousness to combat serious symptoms that cannot be treated in any other way (refractory symptoms). The purpose of sedation is therefore to offer comfort that cannot be achieved in any other way. No palliative request is required for palliative sedation; also no consultation from a second, independent doctor, such as with euthanasia. This sedation is part of normal medical practice. Conditions are the limited life expectancy (one to two weeks) and the untreatable, serious symptoms. The KNMG doctors' organization has drawn up a guideline for palliative sedation. At the same time, the administration of fluid (infusion) and (probe) nutrition is stopped because that would only prolong life. Of course, pain medication continues to keep the patient comfortable.
Palliative sedation does not shorten life. The patient also does not die from sedation, but from terminal illness. It is impossible to say in advance how long it will take for the patient to die. Also not whether the patient can (almost) wake up or become restless or develop other physical symptoms (pressure ulcer, insult). In principle, the doctor visits the patient at least once a day.
There are many misunderstandings about palliative sedation (see box). The doctor and the patient do well to discuss possible sedation with each other in time.
Myths and dilemmas palliative sedation
- You can opt for sedation / As a patient, you cannot choose sedation yourself. You also cannot determine the moment. The doctor determines whether sedation is used. Strict medical criteria apply. If possible, the doctor will of course consult with the patient and his family. If the patient suffers seriously but is not expected to die within 1 or 2 weeks, palliative sedation is not an option. It can, however, be reassuring for patients and family to know that sedation in the final phase is possible if the patient cannot be kept comfortable in any other way.
- With palliative sedation, the patient must be deeply asleep / Sedation is given to ensure that the patient is comfortable. Sometimes superficial sedation is sufficient for this. Then the patient is puffing.
- Morphine is used for palliative sedation / Morphine is not used to lower consciousness with palliative sedation. If morphine is used, it is for pain relief or, in a low dose, for reducing breathlessness. It is important that informal caregivers and family receive proper information about the course, the uncertain duration and the possible symptoms of palliative sedation (see box).
Points for attention when performing palliative sedation
- Rehabilitate medication: medication that is not necessary to provide patient comfort is discontinued. Cholesterol lowers are not useful; Diabetes medication is focused on comfort, not on strict glucose targets.
- Cessation of unnecessary medical and nursing procedures: care is mainly focused on comfort.
- Prevent withdrawal symptoms (nicotine).
- Consider introducing a catheter when that contributes to patient comfort.
- Pay attention to constipation
- Make agreements about wound treatment, stoma care, oral care.
- Attention to ruting. It is very stressful for loved ones to see and hear that for hours or days.
- Caring for the loved ones.
- Caring for the carers.
Midazolam is usually used for sedation, usually by subcutaneous pump, sometimes via a subcutaneous wing needle. Diazepam is sometimes used via rectal administration in patients in nursing homes. Patients who have used benzodiazepines or alcohol for a long time often need a second medicine: levomepromazine.
Forms of sedation
There are various forms of sedation: continuous, short-term, intermittent and acute sedation. Continuous sedation can be superficial or deep. Patient sedation lies with superficial sedation. He is drowsy, but still gets what is happening around him. He can sometimes be awake enough to open his eyes and drink a sip of water. No contact is possible with deep sedation. Short-term sedation is used, among other things, to await the effect of medication (haloperidol) against a delirium. Intermittent or temporary sedation serves to provide the patient with sufficient rest and to subsequently discuss whether the symptoms are untenable and untreatable. Acute sedation is used in acute life-threatening situations such as pulmonary haemorrhage with severe tightness and anxiety.
The most common is the continuous deep sedation. Because the patient can no longer make contact during sedation, it is important that he and his family say goodbye before the start of sedation. The longer sedation lasts, the harder it is for the family to see their neighbor like this. Medical problems can occur during sedation, such as varying sedation depth, restlessness, seizures, pneumonia. Most people who are deeply sedated in the terminal phase die within 48 hours.
Euthanasia has a very different purpose than palliative sedation, namely the termination of life. This is permitted in the Netherlands under very strict conditions (Law on the termination of life on request and assistance with suicide, 2002, in short euthanasia law). Those conditions are:
- There is hopeless and unbearable suffering; suffering does not have to be caused by physical illnesses.
- The patient has repeatedly and deliberately asked for euthanasia; the patient does not necessarily have to put this wish in writing.
- A second, independent doctor assessed the patient and his question and concluded that the question meets the legal criteria. In the Netherlands a SCEN doctor is usually asked for this (Support and consultation for euthanasia in the Netherlands).
- Careful reporting takes place of the assessment of the request and the implementation of euthanasia.
To make a euthanasia request, the patient does not necessarily have to be in a terminal phase. After approval of the request, the patient makes an appointment with the executive doctor for a date and time.
There are many misunderstandings about euthanasia. You will see some of these misunderstandings in the box below.
Misunderstandings and dilemmas about euthanasia
- "Give me an injection" / Euthanasia is putting an end to one's life. Even if that is at your own request, a lot has to be done before all the conditions are met. Euthanasia usually precedes a period of conversations between doctor and patient. A euthanasia statement is not sufficient. It is important that a patient discusses his wishes in time with his doctor. The expectation that you say that you want euthanasia and that a syringe is then quickly arranged is not true.
- Right to euthanasia / Many people think they are entitled to euthanasia. That is not true. Euthanasia is permitted in the Netherlands if the conditions are met. But that does not mean that the doctor is obliged to use euthanasia. The doctor is responsible for the assessment of the request and its execution. He must be fully convinced that all requirements have been met. This also means that he estimates that it is a well-considered wish of the patient and that this wish came about free of charge. The patient must therefore be competent and his wish for euthanasia cannot be (partly) dictated by pressure from his family or because he does not want to be a burden to others. In addition, the doctor must also be convinced that the patient suffers unbearable and hopeless. He can estimate that differently than the patient. Sometimes he sees opportunities to treat anxiety or depressive symptoms. If the doctor is convinced that the request meets all requirements, this does not mean that he is obliged to perform euthanasia. Both the doctor and the pharmacist can object to euthanasia on moral grounds. It is common for them to inform the patient early about their convictions and to refer him to a colleague. The patient then has sufficient time to go to another doctor.
- Or not / Sometimes it reassures a patient if he knows that the doctor is willing to talk about euthanasia. The doctor can immediately discuss the euthanasia request, or promise to do so later in the disease process. That fact alone can give so much peace that it does not lead to euthanasia. Sometimes a patient is able to find new things important enough to live for. That is why he postpones his choice for the end. The circumstances that he initially mentioned: "I want to die if …" sometimes turn out to be tolerable. Sometimes the patient decides not to use euthanasia in the course of time or just before the planned moment. Or the patient dies before the euthanasia is planned.
- Finished life / There is a discussion going on about "being done with life" (completed life, suffering with life). The term "completed life" usually refers to the elderly with various ailments and limitations, many of whom have passed away family, friends and acquaintances. As a result, they no longer experience their lives as meaningful. They see no perspective and can no longer afford to live another day, a week, a month. The discussion is about whether there is hopeless and unbearable suffering in this situation. Occasionally euthanasia has been applied in the Netherlands in such a situation.
- Euthanasia in specific groups / Discussions are underway as to whether euthanasia can be used in dementia patients. The law does not exclude this group. The key question is whether dementia sufferers are able to make their will known when it is decided to start euthanasia. In an early stage of dementia, they are naturally competent. They can then seriously suffer from the idea that dementia is getting worse and they will no longer recognize their partner or children. The question is whether they will suffer at that stage of dementia. They can then no longer make this known and can no longer confirm their euthanasia request. Doctors are therefore rarely prepared to use euthanasia in people with advanced dementia. Occasionally, euthanasia has been applied in the Netherlands to people with dementia. There is also discussion about whether euthanasia is permitted in children. Young people aged sixteen and older can decide for themselves (WGBO). Young people aged 12 up to and including fifteen need permission from both the younger and the parents. In principle, euthanasia is not permitted under the age of twelve, even if parents and children so wish. We are looking for ways to make euthanasia possible for them. Experience with children with cancer, for example, shows that children aged eight or nine can very well indicate when life is no longer necessary for them.
Means in euthanasia and the role of the pharmacist
Two types of agents are required for euthanasia, which are administered intravenously. First a drug that makes the patient unconscious: sodium thiopental. Because injecting it can be painful, 2 ml lidocaine 1% is injected in advance. Propofol is sometimes used instead of sodium thiopental. Then a means to stop breathing, a muscle relaxant such as rocuronium (Esmerol®). The first step can also involve the patient taking a drink with, for example, a barbiturate.
The doctor works closely with the pharmacist to perform euthanasia. The Pharmacy Provision Act (WOG) applies to pharmacists. The KNMP pharmacists 'organization, in collaboration with the KNMG doctors' organization, has drawn up guidelines for the delivery of euthanatics (KNMG / KNMP 2012).
In principle, the doctor contacts the pharmacist in advance. He informs the pharmacist of the background of the situation and the procedure followed. The pharmacist assesses whether the due care requirements have been met. And he knows that he will soon receive an application for supplying euthanasia.
Consultation is possible between doctor and pharmacist about the method, the choice of the drugs and the route of administration. They also make an appointment about telephone accessibility around the time the euthanasia will be performed.
Even though the pharmacist gives the medication to the doctor, they must be in the name of the patient (WGBO), possibly only indicated with initials.
The prescription must also state that the means for euthanasia are intended: pro euthanasia.
The label must state, among other things, that the doctor must personally return the remains and hand them over to the pharmacist.
The pharmacist personally delivers the drugs to the doctor. He keeps the funds in-house. Together they agree when the doctor will return the remains to the pharmacist. He must hand them over personally to the pharmacist. That is also on the label. In the pharmacy there are usually agreements about how this refund is processed in the pharmacy information system (in the name of the patient).
But the pharmacist does more. He stops standard deliveries and deliveries that are "en route" in time, such as baxter rolls and incontinence material. The complete procedure is described in the following box.
Prepare, deliver and document
The pharmacist must personally hand over euthanatics to the doctor. Sometimes the pharmacist prepares the products for administration and numbers the syringes. Then the pharmacist must know the time of euthanasia, because the drugs have a limited shelf life after preparation. If the doctor wants a spare set, in case something goes wrong with the ampoules, the pharmacist also supplies it.
The pharmacist provides the doctor with a document stating what exactly has been used. The doctor needs that for his documentation for euthanasia and the municipal coroner. This can also ask for the used ampoules. When the pharmacist has prepared the medication and given it to the doctor in a syringe, he can also give the ampoules to the doctor.
When the doctor returns any remaining medication to the pharmacist, they usually discuss how the euthanasia and cooperation went.
Pharmacists can refuse to deliver a euthanatic, just as doctors can refuse to perform a euthanasia. It is common for a pharmacist who does not want to cooperate in euthanasia for reasons of principle, to make his views known to the doctors in his pharmacy's catchment area. The doctors can then call in another pharmacist.
Differences between palliative sedation and life-ending action
The table below shows differences between palliative sedation and life-ending treatment.
Help with suicide
Some people seek the cooperation of a doctor for their self-selected death. This way they can keep their dying in their own hands as much as possible. They then take a deadly drink. This drink contains a high dose of barbiturates (phenobarbital). That tastes bitter and can cause vomiting. That is why the person in question starts taking an anti-emetic medicine (metoclopramide) twelve hours in advance. The doctor is present when the patient takes the drink and stays until the patient has died. If the patient has not died after a certain period of time, the doctor will still administer euthanatics intravenously.
Differences between palliative sedation and life-ending action
|Palliative sedation||Euthanasia and assistance with suicide|
|Purpose||Offering comfort and reducing losses; not: shorten life||End life|
|Medical treatment||Normal medical practice||Special medical treatment; punishable, unless the doctor has met all due care requirements|
|When is it allowed?||For unbearable suffering, in the last 1 to 2 weeks, if the unbearable complaints cannot be adequately relieved in any other way||With hopeless, unbearable suffering, with repeated, deliberate and voluntary requests from the patient; the doctor must be convinced of the suffering and must have consulted an independent second doctor|
|Consultation||Recommended, not required||Obligated|
|Patient permission||Consultation is desirable; acting against the will of the patient is of course not allowed, but in emergency situations sedation can be used without explicit permission||Necessary; the patient must have made a request|
|Choice||The doctor determines whether there is an indication; then the patient can get sedation||The patient makes a request|
|Phase||Only in the dying phase (1 or 2 weeks to live)||Can also be used for the dying phase|
|Shorten life / cause of death||No, the patient dies from the consequences of the disease||Yes, the patient dies of the euthanasia|
|Resources||Midazolam||Barbiturates and muscle relaxants|
|Morphine||Yes, only as a remedy for pain and stuffiness||Not for euthanasia, only as a remedy for pain and stuffiness|
|Notification||Death of course||No natural death; report to the municipal coroner and review committee|