At 18, Lee-Anne Peters tested positive for Huntington’s disease.
Just over a decade later her body was in serious decline. On the verge of being admitted to a long-term care facility and determined to die on her own terms, Lee-Anne took her own life.
Huntington’s is a hereditary disorder that causes brain cells to die and eventually leads to incapacitation and death. The Huntington’s gene is dominant, meaning each child of a parent with the disease has a 50 per cent chance of inheriting the disease. Symptoms typically appear between the ages of 30 and 50.
Lee-Anne’s mom, Tracy, was placed in a long-term care facility at 29. She died 15 years later, unable to do much more than stare at the TV.
When Lee-Anne found out about her positive results she decided to live her life to its fullest. She moved to Vancouver Island, got a job, fell in love.
“Her life was so short, she wanted it to be big,” said Lisa Peters-Schmidt of her spunky little sister with the multi-coloured hair and magnetic personality.
Near the end of her life, Lee-Anne lived semi-independently in a house with some of her best friends, who had assumed the role of caregivers as her health began to decline.
But Lee-Anne was also determined not to die in an institution, where her only options would have been to refuse the administration of a feeding tube or to sign a do-not-resuscitate (DNR) order – in other words starve or choke (Huntington’s makes it hard to swallow) to death.
She tried to end her life more than once, and in August 2015, she was successful. Unlike the last few attempts, she did not throw a big party. She did not say her goodbyes.
Her sister and father, Lisa Peters-Schmidt and Frank Peters, wish a law permitting medical aid in dying had been in place – one that would have allowed Lee-Anne to die in a more compassionate way. They feel robbed of the opportunity to sit by her side and offer her comfort as she chose her time to pass.
But as it currently stands, Peters-Schmidt thinks the law would only continue to fail her sister.
Bill C-14, which passed in the House of Commons on Tuesday, effectively limits access to medical assistance in dying to those who are terminally ill. (The exact wording of the criteria is “their natural death has become reasonably foreseeable.”)
For someone like Lee-Anne or her mother Tracy, that would mean living through years of pain and suffering before becoming eligible.
Death usually occurs between 15 to 20 years after the onset of Huntington’s – not from the disease itself but from complications such as choking, heart failure, infection or pneumonia.
In the meantime, affected individuals face a slow decline of their physical and cognitive capacities, starting with involuntary movements and twitches and ending with the inability to walk, speak, swallow and make decisions. The disease also causes many psychological symptoms, including depression, apathy, irritability, anxiety and obsessive behaviour.
Peters-Schmidt is also concerned over the omission of advance directives from the bill. The Liberal government has committed to studying advance directives further, but Peters-Schmidt wants parliament to “get it right” the first time.
She isn’t sure how someone with Huntington’s, whose cognitive abilities become more and more impaired as the disease progresses, would be treated.
She believes a law permitting advance directives could have bought her sister a few more years, because Lee-Anne would have known her decision would be respected.
Lee-Anne had two do-not-resuscitate (DNR) orders in her home, one by each of the doors so that in the event that she collapsed or choked her wishes would be respected.
“I don’t think she could be any clearer,” said Peters-Schmidt.
The Senate has been critical of the Liberals’ medical assistance in dying bill, saying it strays too far from the Supreme Court’s Carter decision, upon which it is based. It is expected the Senate will amend the bill to make it less restrictive.
The Supreme Court deadline for a new law on medical assistance in dying is Monday. The bill is not expected to pass through the Red Chamber before that time.
