«
»

Top

Assisted Dying: What Patients and Their Families Really Want

Aug 21, 2019

Assisted dying is an important societal debate 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 responded to our survey!

Assisted Dying: What Patients and Their Families Really Want

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. 

Find out more on the NHS website by clicking here

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.

What end-of-life measures should be allowed in the United Kingdom? Join the discussion!

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.

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments

on 8/22/19

I dont believe in it my mum died of tuberculosis there was no cure then i was 8 weeks old a year after she died they found a cure

on 8/22/19

As a COPD sufferer, I know the terrible end of life I face. I do not want to suffer that or have my family endure watching me struggle for every breath. The law needs to be changed for people facing terminal illnesses, especially in the last stages of their illness. 

No, I am not ready to give up. I am actively fighting this insidious disease, but, being practical, I have made my power of attorney, along with a letter of wishes drawn up by my lawyer, stating that I was not to be kept alive artificially. When the time came, medical treatment, with the exception of pain relief, should be withdrawn and I should be allowed to slip away.

With the law as it stands that is all I can do. I would rather have the choice currently denied to me. I still have a few years before I have to use oxygen. Hopefully the law will be more merciful by then.

on 8/22/19

Having witnessed a good few dying within the NHS I would welcome the option of assisted dying for my wife and myself. Death is an ugly affair of real pain and suffering unless you are one of the lucky ones who enjoy a quick sudden exit. Religion has nothing to do with it as we simply follow a set procedure of nature talking its course. The NHS is a joke at all levels and never choose the option of dying at home painful as the dying are left to the mercy of nurses with little supervision of a Doctor. Nurses can't decide morphine levels so the patient ends up with not enough relief from the pain unless your relatives can force the GP out to increase supply. Care and assistance dire so unless you have fit young relatives to look after your needs, ensuring a good standard of care, the state support is appalling and impersonal. So best option is a hospice but not all dying want to have their final days spent in a strange place but the care and morphine access very good. Hospital is the mid-way option, impersonal but at least you get access to the morphine to allow passing easier.

So at the end of the day to reduce the terrible suffering of your last days, weeks or months assisted dying is a good option. Dying is not a nice experience for the vast majority of people and anyone who believes a nice painless death need to get real. Nature has provided a quite predictable process of dying as the body shuts down but the journey to that point can be painful and distressing.

on 8/22/19

As a Christian I don’t believe it is right to end ones life. However having worked in the NHS I know that there is an end of life pathway with medication that can be given for dealing with pain. This will control pain but can accelerate death for some patients due to the different tolerance levels of the drugs given. More often the patient will then sleep and eventually will go into a coma and natural death will occur. This is not Euthanasia but is about pain control. Anything else in my opinion allowing Euthanasia by law could well be open to abuse and I therefore do not go agree with changing the law to accommodate Euthanasia.

on 8/22/19

my mam had dimensia thank god she went quick  she stopped eating and starved to death  

You will also like

Medication Reconciliation: a practice to avoid prescriptions errors, in and outside of the hospital

Medication Reconciliation: a practice to avoid prescriptions errors, in and outside of the hospital

Read the article
Working life and chronic illness: the experiences and solutions of Carenity members

Working life and chronic illness: the experiences and solutions of Carenity members

Read the article
Meet Ophélie, our Data Protection Officer

Meet Ophélie, our Data Protection Officer

Read the article
Working life: what rights for reintegration do patients have?

Working life: what rights for reintegration do patients have?

Read the article