With quiet dignity and surrounded by loved ones, on October 10 she will look out her living room window at her favourite view of the lake, sitting calmly and in control as her doctor injects drugs that will quickly put her to sleep before she draws her last breath.
Forty years of fighting and suffering and anguish is enough for Charlene Needham – she is taking back control of her life by ending it.
She said ever since she made the decision to go ahead with the Medical Assistance In Dying (MAID) program offered by Alberta Health Services some weeks ago, there is one word that best sums up what she’s feeling.
“Relief,” she said.
That was the unprompted one-word answer she gave as she sat down with The Eagle at her home overlooking Cochrane Lake last weekend to tell her story.
She said the common list of things people cite in similar circumstances all applied to her to some degree – loss of autonomy, loss of dignity, relief from pain and suffering, not being able to enjoy simple pleasures, incontinence, fatigue, mental exhaustion. But the overwhelming feeling was relief.
She’s tired. Physically, emotionally and mentally, she is tired of the anxiety. Every single moment of every single day is consumed by thoughts of her precarious medical condition, wondering what’s next. She has had enough.
“Things were just getting worse and worse over the years. Every time I turned around something else was falling apart on me, something else I had to do for drugs, other places to go to have injections done . . . I’ve had enough people poking at me, using me as a guinea pig, hospital after hospital after hospital, ” she said.
“I never get a friggin’ minute to not think about, ‘Did I do my pills, did I do my injections, did I drink enough of this stupid juice . . . it’s taking away who I am, totally.”
She described herself as an independent person who no longer has the freedom to do anything, including go for groceries, go out to a restaurant, whatever.
Restaurants are off the list, as she worries about possible repercussions of unknown ingredients. She has a permanent ostomy bag.
“Am I going to eat something that blows this thing off me that’s keeping me alive, and end up having to go home because I’ve made a mess of myself?”
“It just never stops making me remember it’s there,” she said.
She gives her husband Ken very specific instructions on where to find a certain letter she wants to share, because “he can never find anything.” She feigns exasperation retelling the time she was recovering from surgery at Peter Lougheed Hospital in Calgary.
“He’s going to have to, well . . . when I got really sick in 2011 I was in hospital for 95 days, I’d be getting phone calls, ‘Honey, where’s the washing machine? Where’s this? Where’s that?’ and I thought, oh my God, I’m not getting any rest in here either.”
After a couple of surgeries in 2010 and 2011, Charlene experienced pain in her abdomen that wouldn’t go away – something that didn’t happen with previous surgeries.
Going over test results after that, her surgeon told her if things go wrong again they will not be able to save her. Another surgery would be out of the question, since she was already so full of scar tissue.
Charlene was diagnosed with Crohn’s Disease and ankylosing spondylitis over 40 years ago. Since then multiple bowel resections have left her with only three feet of intestines. (The average person has between 15 and 20 feet). She struggles to maintain hydration and nutrition. No further treatments are planned or possible, other than palliative measures.
She has reached the tipping point but seems almost uncannily calm about the whole experience.
In most of America and the rest of the world these transactions take place on the margins of the law, which can add a level of stress increasingly seen as unnecessary as public opinion has gradually shifted over the last few decades.
Assisted dying is legal in Canada, Belgium, The Netherlands, Luxembourg, and some states in the U.S. Assisted death has been legal in Switzerland since the 40s. Great Britain debated, then voted down a bill in 2015.
It is a debate fraught with emotional overtones involving medicine, law, history and philosophy. Ethical perspectives are divided.
The literature is rife with stories supporting all sides of the issue, and there are a number of websites providing advice to people living in jurisdictions with no laws.
In Canada, two physicians are required to do an assessment of the patient. A person may receive medical assistance in dying only if they meet all of the following criteria: they are eligible for health services funded by a government in Canada; they are at least 18 years of age and capable of making decisions with respect to their health; they have a grievous and irremediable medical condition; they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure; and, they give informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care.
A person has a “grievous and irremediable medical condition” only if they meet all of the following criteria: they have a serious and incurable illness, disease or disability; they are in an advanced state of irreversible decline in capability; and, that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable. (A mental illness is not considered to be an illness, disease or disability for the purposes of this legislation).
When Charlene told her brothers and sisters in Winnipeg what she had decided to do, it did not go well.
Her two younger brothers told her she couldn’t do this because they loved her. They cried and had to hang up the phone.
So she decided to go talk to them in person.
A “get together” was organized in July for extended family there who may not be available to travel to Cochrane this month to come and say goodbye.
A celebration of her life is planned for 2 pm Oct. 12 at Cochrane Alliance Church, 902 Glenbow Drive.
Her siblings have come to accept her choice and she has found a kind of grace.
Charlene’s one piece of specific advice to people who may be in a situation similar to hers is to find a good psychologist.
“And do a lot of talking, a lot of research,” she said.
Julie Handrahan is an end of life doula in Bragg Creek who gives presentations at the Cochrane Public library called Dying for Conversation. She provides counselling for people facing decisions like Charlene’s.
She said Canadians are fortunate to have an option like MAID.
“I'm all about conversations and I think it's important that we start to have conversations around death and dying, and that includes having conversations around MAID because it is an option,” she said.
Handrahan has been on the family side of a MAID death with her sister about four years ago, as well as on the death doula side with a client.
“It was a very good decision for both of them,” she said. “What was so beautiful about it was that I feel I had three of the most precious weeks with my loved one.”
Upcoming sessions at the library are scheduled for Oct. 12, Nov. 9, and Dec. 14.
Handrahan’s Transition Well doula service can be accessed at transitionwell.ca.
The library also offer sessions called Unstuck: Grief and Loss, on the third Wednesday of the month from 10:30 am to Noon.
Self-described as non-religious, Charlene called herself spiritual.
“Three times I’ve died,” she said with a shrug.
Once was in an ambulance in 2005, when she remembers the paramedic telling the driver to pull over because she couldn’t find a pulse.
Another one of those times involved a CAT scan in 2011 at a Calgary hospital that suddenly turned into a life and death experience.
She went into a fit of screaming and thrashing, striking out at a doctor and the nurses. She felt her legs were on fire.
Before she came to in the Intensive Care Unit, the attending doctor told Ken that his wife was “gone for five minutes.”
She said some of the common descriptions people give when they have near death experiences don’t quite match hers.
“It’s not a white light you see at a distance, it’s a humongous light that you’re absorbed by,” she said.
“It’s saying ‘let go of everything that ever hurt you, let go of all the pain. Just relax, you don’t have to worry.’”