Huntington’s Patients in UK Want to Open Debate on Assisted Dying, Small Study Shows

People with Huntington’s disease in the U.K. are pushing for more open communication regarding assisted dying between clinicians, patients, and their families, a small research study indicates.

A first-of-its-kind study in the United Kingdom, where assisted dying is illegal, looked into the attitudes of people with the debilitating disease, which typically leads to dementia and the inability to coordinate movement.

The study, “The views of adults with Huntington’s disease on assisted dying: A qualitative exploration,” was published in the journal Palliative Medicine.

Huntington’s disease (HD) is inherited, meaning that people with a diagnosis will have likely witnessed the suffering of a parent. In Holland, where assisted dying is legal, several HD patients a year have chosen to die there between 2007 and 2011, the study found.

“Our findings suggest that people with the Huntington gene would welcome talking about assisted death but feel they are not able to do so,” Lancaster University’s Dr. Jane Simpson, co-author of the study, said in a press release.

Study participants spoke about the need for a balancing act between feeling supported and feeling distressed by conversations about dying. Many of them feared prolonged suffering, and assisted dying offered a compassionate way out for them and for their families, they said. The study was, however, very small, as only seven people who were gene positive for the disease participated.

“It is a really difficult balance. And I know that’s the same with family and friends as well as medical professionals,” said Anna (not her real name).

Most patients reported that they believed being able to choose would improve their overall quality of life, in the sense that no one better than themselves or their family would know better when it was the right time for them to go.

“If someone is sound of mind … and people can understand that person’s wishes, I think quite strongly that it should be their right,” said Mary, another study participant.

The most disruptive aspects of the disease were reported as being a potential loss of their role, personality and meaning, which all contributed to a decision in favor of assisted dying, the study found.

“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,” Simpson said.

As of November 2017, assisted dying is legal in the Netherlands, Belgium, Luxembourg, Canada, Switzerland, Germany and Japan.

In the United States, the practice is legal in the states of Oregon, Vermont, Montana, Washington, and California.

South Korea recently joined these countries, and will start practicing assisted dying in February 2018. And in November, Australia announced that Victoria will become the first state in the country to allowing assisted dying, starting in 2019.

Colomia allows the practice of euthnasia, which is defined as an intervention intended to end a life to relieve suffering, for example, a physician administering a lethal injection.