Assisted Dying: What Patients and Their Families Really Want
Published 21 Aug 2019 • Updated 26 Sep 2019 • By Louise Bollecker
Assisted dying is a major issue of society that may resonate particularly for patients with serious illnesses. Should active euthanasia be allowed? What about assisted suicide or indirect euthanasia? How should the law regulate these practices? We asked Carenity members in France, the United Kingdom, Germany, Italy, Spain and the United States: more than 3,000 members answered our survey!
The United Kingdom prohibits all forms of death assistance
A strict law against assisted dying
Let us first recall the law in force in the United Kingdom. The Suicide Act of 1961 has made assisting, aiding or counselling somebody in relation to taking their own life, a criminal offence which is punishable by 14 years’ imprisonment. However, on a case by case basis, authorities may decide not to prosecute depending on the context and circumstances of death. Patients are also allowed to refuse any treatment and they may write their will in advance directives that healthcare professionals have to follow.
The different forms of assisted dying
Allowing end-of-life assistance can take many forms that do not have the same legal implications. Not all of them are allowed, even in countries that have legalized one of these practices.
Active euthanasia: The deliberate administration of lethal substances with the intention of causing death, at the request of the patient who wishes to die, or without their consent, upon the decision of a relative or medical professional
Passive euthanasia: Refusal or cessation of life-sustaining treatment
Indirect euthanasia: The administration of treatment, generally to reduce pain, that has the consequence of causing the patient to die sooner
Assisted suicide: The patient ends their own life, guided by a third party who has previously provided them with the information and/or means necessary to commit suicide
The law does not go far enough according to our members
Only 10% of the British respondents to our survey consider that the law is fine as it is: 88% think that the law does not allow assisted dying easily enough. Carenity members in the United Kingdom are largely in favour of all forms of assisted dying, whether indirect euthanasia (78%), active euthanasia (75%), passive euthanasia (71%) or assisted suicide (74%). This is above the average of members in other countries where the survey was conducted. This rate of adherence to end-of-life support may be due to the overly restrictive law.
By way of comparison, Carenity members in the United States are the most satisfied with the law in force in their country (29%), but it should be taken into account that there is no single law in the United States: 10 out of 50 states allow assisted suicide.
Members support the right to assisted dying
Many justifications for assisted dying
Having an incurable disease, knowing your end of life is near and certain, being in full possession of intellectual faculties at the time of their request... These are all situations that would justify access to assisted dying according to the respondents to the survey. Two situations particularly moved patients and their relatives in the United Kingdom:
- The patient is suffering intolerably (89%);
- The patient has written advance directives specifying the desire for an assisted end of life (84%).
Even 21% of members think that assisted dying can be considered under any condition.
43% of patients have already thought about assisted dying
43% of our British survey respondents have already considered an assisted end of life due to their illness. This is more than in the United States, where only 33% of patients have thought about it. Yet, the members of these two countries share the same anguish: suffering in an intolerable way. Ending their physical suffering is the main reason why members consider an assisted end of life. The second reason is that members do not want to be a burden for their loved ones. Finally, many would consider an assisted end of life if they knew for sure that their condition could not improve.
Only a few respondents know about advance directives
What are advance directives?
Advance directives are your written instructions about the treatments or medical procedures you want or do not want if one day you can no longer communicate after a serious accident or in the event of a serious illness. They concern the conditions at the end of your life, i.e. to continue, limit, stop or refuse medical treatments or procedures. The health professional must respect the wishes expressed in the advance directives.
Only 13% of UK members have written advance directives. 44% of them were not aware of this provision! This lack of knowledge of available options may explain that 50% of respondents would like to make these directives mandatory. This would ensure that all patients are informed. On the other hand, in Germany, 53% of members have already written their advance directives! 75% of members would also like to make them mandatory.
Still a taboo in the United Kingdom?
Only 59% of our respondents have discussed their end-of-life with their loved ones. In comparison, 73% of French members have discussed this difficult topic with their family or friends. 50% have even designated a trusted person among their relatives: for 55%, it is the spouse. 22% have designated one of their children.
What is a trusted person?
Although any adult may appoint a trusted person, only 19% of our respondents have gone through the procedure. The trusted person, when you no longer have the capability to express your own will, has the role as a referent for the medical team. He or she will be the person consulted first by the medical team when any questions arise about the implementation, continuation or discontinuation of treatments and will receive the necessary information to be able to express what you would have liked. The trusted person does not express their own wishes but campaigns for yours. Their testimony will take precedence over any other testimony (family members, relatives...).
They are not responsible for making decisions about your treatment but will testify to your wishes and convictions. The responsibility for making decisions rests with the physician and the decision will be made after the advice of another physician and in consultation with the health care team.
What about members opposed to the assisted dying?
Although a minority, some of our respondents expressed their rejection of assisted end-of-life. Moral and religious beliefs dominate their responses:
“I don't believe that anyone has the right to do this. As a Christian, I totally believe that God is in charge and He is the only one who says when you are going to die. I watched my Mother die and not once did this cross our minds.”
“Because I believe that death is in the hands of God and one should only go when God calls us and not take it into our own hands to end the life. However, having said that, I would respect a person's wish if they want to end their life because they do not want to suffer for a reason known to them alone.”
"If the person wishes to take their own life, it is one thing but to put the burden on a loved one is a terrible situation to place them in. The law needs to be clarified so the loved one would not be prosecuted.”
“I think the idea of this could be abused, there’s a lot of variants and possible things to go wrong.”
"There are too many risks with legalizing assisted dying and other types of euthanasia: the possibility of using them to eliminate "undesirables" is not just a possibility - it's happened and still happens."
Other members pointed out that, despite their conviction, they would respect the decision and suffering of others. Finally, many regret that palliative care is not up to the task of relieving the patient's pain and supporting their loved ones.
What is your opinion on assisted dying? Do you think there is a taboo around it? How could the law be improved?
Survey conducted in July - August 2019 among 3,007 Carenity members in France, Italy, United Kingdom, Spain, Germany and the United States. All members (patients and caregivers) were invited to give their opinions.