People with Huntington's want more openness around assisted dying

December 7, 2017
Many patients feared prolonged suffering at the end of their lives. Credit: Lancaster University

Research has shown that better communication around assisted dying is needed between clinician and patients diagnosed with Huntington's Disease.

This is the first study in the UK (where assisted dying is illegal) into the attitudes of people with the condition, which usually leads to dementia and inability to coordinate movement.

Because it is inherited, people with a diagnosis will often have witnessed the of a parent. Assisted dying is legal in Holland where several Huntington's annually chose to die between 2007 and 2011.

Dr Jane Simpson of Lancaster University said: "Our findings suggest that people with the Huntington gene would welcome talking about assisted death but feel they are not able to do so."

Participants in the study spoke about the need for a balancing act between feeling supported and feeling distressed by conversations about dying.

Anna (pseudonym) said: "It is a really difficult balance. And I know that's the same with family and friends as well as ."

Many of them feared prolonged suffering at the end of their lives and saw assisted dying as an act of compassion towards their families.

They believed they were best placed to make such decisions about their own deaths provided they had the capacity.

Mary said: "If someone is sound of mind... and people can understand that person's wishes, I think quite strongly that it should be their right. "

Potential loss of role, personality and meaning were considered the most disruptive aspects of the disease which could lead to a decision in favour of assisted dying. 

Dr Simpson said: "Fears for the loss of self, as well as fear for pain or symptom acceleration, seem to be main drivers for wanting the option of assisted dying to be available."

Explore further: Why doctors need to improve the way we discuss assisted dying

More information: Laurence Regan et al. The views of adults with Huntington's disease on assisted dying: A qualitative exploration, Palliative Medicine (2017). DOI: 10.1177/0269216317741850

Related Stories

Why doctors need to improve the way we discuss assisted dying

November 24, 2017
Assisted dying can be a divisive and polarising subject. But there is one aspect on which most people probably agree – the need to improve the conversations people have about death.

UK rejects terminally ill man's request to be killed

October 5, 2017
Britain's High Court has rejected a terminally ill man's request to be killed with medical help.

Assisted dying for psychiatric disorders: Serious public health impact

June 21, 2016
Offering medical assistance in dying to people in Canada on the basis of psychiatric illnesses could put vulnerable people at risk, argues a commentary in CMAJ (Canadian Medical Association Journal).

Canada must respect physician objectors who do not wish to refer patients for assisted death

November 23, 2015
Assisted dying may become legal in Canada on Feb. 6, 2016, and we must respect physicians' conscientious objections to assisted dying if it is against their principles.

Dying UK man to challenge British law on assisted suicide

January 6, 2017
A British man with a terminal disease is attempting to overturn the country's laws on assisted suicide.

Terminally ill British man in right-to-die court fight

July 17, 2017
A British man who is terminally ill with motor neuron disease asked the High Court in London on Monday to let him end his life.

Recommended for you

Searching for a link between achy joints and rainy weather in a flood of data, researchers come up dry

December 13, 2017
Rainy weather has long been blamed for achy joints. Unjustly so, according to new research from Harvard Medical School. The analysis, published Dec. 13 in BMJ, found no relationship between rainfall and joint or back pain.

Mistletoe and (a large) wine: Seven-fold increase in wine glass size over 300 years

December 13, 2017
Our Georgian and Victorian ancestors probably celebrated Christmas with more modest wine consumption than we do today - if the size of their wine glasses are anything to go by. Researchers at the University of Cambridge have ...

How well can digital assistants answer questions on sex?

December 13, 2017
Google laptop searches seem to be better at finding quality online sexual health advice than digital assistants on smartphones, find experts in the Christmas issue of The BMJ.

Healthy eating linked to kids' happiness

December 13, 2017
Healthy eating is associated with better self-esteem and fewer emotional and peer problems, such as having fewer friends or being picked on or bullied, in children regardless of body weight, according to a study published ...

Owning a pet does not seem to influence signs of aging

December 13, 2017
Owning a pet does not appear to slow the rate of ageing, as measured by standard indicators, suggest the authors of a study published in the Christmas issue of The BMJ.

Increased air pollution linked to bad teenage behavior

December 13, 2017
A new study linking higher levels of air pollution to increased teenage delinquency is a reminder of the importance of clean air and the need for more foliage in urban spaces, a Keck School of Medicine of USC researcher said.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.