Tuesday, June 7, 2022

Aunt Mary's Voice - A woman with Cerebral Palsy died by dehydration.

The names are withheld based on the privacy of the family.

As proposals come forward for amending federal legislation to expand access for Canadians to medical assistance in dying, it is important to be educated about palliative care and how to maintain respect for life from beginning to natural death especially for the most vulnerable, those with physical disabilities who are deserving of assisted living not assisted death.

This is the story of very special woman who, because of her disability, was denied, by both her immediate family and the physicians in charge, the same “latitude and treatment” that would be given to someone else her age who was not physically disabled. Instead, our Aunt Mary was denied IV (food and water), medical investigative tests, and simply sedated to death. A person can survive 8 to 15 days without fluids, and on the eighth day of forced sedation and dehydration our beloved Aunt Mary left this world.

Aunt Mary had cerebral palsy from birth and osteoporosis developed later in life, neither of which is palliative. She was non-verbal but could communicate with a developed form of signing that her care givers understood, and signaled a ‘yes’ or ‘no’ to closed questions. As her care giver specifically noted “you had to ask her the right questions” to clearly understand her thoughts. Aunt Mary had been living in her home with her roommates in assisted living for almost 38 years. Her beloved caregiver of 30 years taught others how to communicate with her and how intellectually capable she truly was. She was an adult woman, not a baby.

On a Friday morning, Aunt Mary woke up from her sleep agitated and sweating but had no fever. She was restless, upset, and continuously apologised for being a problem to her caregiver by signing “sorry”. She did not have any physical pain but did not feel right. Her recent prescription for antibiotics ran out (she was being treated for a possible UT infection) and for some reason her Ativan, which usually settled her, had also been discontinued.

When daylight arrived and after a shift change of the night caregiver, she had a coffee like every morning and managed her shower, but was still feeling agitated and definitely not up to her usual routine of listening to the Dr. Phil podcast – her latest hobby. The caregiver did a pain check again, and there was no physical pain. The care partner nurse was contacted to see what could be done. Circumstances would be that due to staff shortages, no one was available to take Aunt Mary to the hospital emergency room and wait with her to help her communicate with the doctors until her siblings took over. This was how her visits to the hospital had always been in the past.

This time, the care partner nurse suggested that Aunt Mary go by ambulance even though the situation was not an emergency; they felt they should not wait through the weekend to renew her prescriptions. Aunt Mary really did not want to go the hospital and hated the gurney they put her on, but away she went with the promise that the doctors would fix her medications and she would be home later that day. As per Community Living protocols, when Aunt Mary is sent to the hospital her immediate family is to be contacted. However, no one bothered to update the community living care givers and residents about her status that afternoon.

Aunt Mary did not come home that day. Instead, a chain of events was put into place that directly led to her death. Aunt Mary was said to have been screaming so much that the siblings didn’t know what to do. No one seemed to understand what she wanted. Did Aunt Mary simply want to go home? Home to her community living family, not home to heaven? Doctors who were not her family doctor were consulted, together with her siblings, and Aunt Mary was “sedated after communicating that she did not want to be kept alive,” as per the response given to a Freedom of Information request sought out by Aunt Mary’s dedicated and beloved niece.

How did Aunt Mary communicate this without her interpreters who knew her best? How could her siblings simply allow strange doctors to interpret her signals, what questions did they ask, and did they ask them in a way in which she was able to communicate clearly? Her cerebral palsy was spasmatic in nature and you had to double check her ‘yes’ and ‘no.’ Instead of relying on those who could understand her best, her siblings made a list of who was not allowed to see her after her one niece was able to visit. At the top of the list was anyone from Community Living, next was her favourite niece who visited her regularly.

Her niece would take her on outings and arrange parties that Aunt Mary was always so excited to attend. This niece knew how to communicate with Aunt Mary and introduced her to live theatre. They had three plays booked for the summer. It was always known Aunt Mary loved a good love story. Aunt Mary was fortunate to have had her own love of her life. He spoiled her with lovely gifts and for many years every week they would have a special date. They were quite the couple.

Meanwhile, Aunt Mary’s niece was contacted on Saturday to let her know that Aunt Mary was dying, and she immediately came to visit. She was not told about Aunt Mary’s meeting with the doctors who approved the sedation plan to let her die. When her niece asked questions about the diagnosis for dying, she was told specifically not to question the treatment plan. She observed no IV, no antibiotics, no water or even “jello” nearby, only part of a cold cup of coffee and a shunt in her side for narcotics. Aunt Mary saw her niece and made a commotion. The staff offered more pain medication, and the niece was told to leave. She was told “it is her time,” “it’s God’s plan,” but in her mind she knew it was wrong to push the hand of God. She was left overwhelmed. Later in the week she was told that she could not visit and “we are having trouble with her special medicine,” “it’s taking too long,” and for asking again “what diagnosis was given,” she was accused of being heartless by her aunts. It just didn’t make sense.

One of the siblings reached out to Aunt Mary's caregiver of over 30 years and secretly allowed her a visit. Immediately after the visit, Community Living and the special niece were alerted to the fact that Aunt Mary was heavily sedated. She was “cold and completely stoned but managed to respond at the mention of her special niece.” What was going on? The siblings continued to refuse to let anyone see her, and the niece came back to visit but was denied three times even when hospital policy permitted visits. The restricted visitor's list was mentioned, yet a sister-in-law was allowed to spend six hours caring for Aunt Mary. Why not the niece who knew her so well? The niece was the daughter of Aunt Mary’s eldest sister who on her death bed made her children promise to never forget her sister, their Aunt Mary. Things were making less and less sense.

What was happening to Aunt Mary? Before the attempt of a third visit, the niece made a visit to the community living group home. There she was told Aunt Mary did not leave the home in a dying state. Aunt Mary’s roommate saw the niece and went rushing to her room to return with a Christmas tree topper angel. She kept saying the words “The Angel is talking; the Angel is talking. It’s for Mary.” What is the angel saying? “She says Protect Mary.” The niece took the Angel to the hospital with the promise it would be brought to Aunt Mary’s room. A night nurse confirmed the Angel was at her bedside when Aunt Mary passed away the next morning after having received her message, “a sign from above.” Aunt Mary knew the people she lived with, her roommates, were her family and it was OK to go now even though she fought as hard as she could that entire week.

As immediate family, we often forget the ties of the Community Living family, especially in the case of Aunt Mary. Even though she was nonverbal, she had her own voice. We cannot just assume it is the voice of a self-appointed Substitute Decision Maker as our legal system in Canada allows this to be a non self-appointed direct relative, but places no regard as to which direct relative actually spends time with the disabled person. The only way around this would have been if they had done tests to prove that Aunt Mary was of sound mind and then legally, she could have appointed her own Substitute Decision Maker. 

We have to remember that “being disabled does not mean that death is better than life.” Aunt Mary was subjected to palliative sedation.

Palliative sedation is a treatment plan that focuses on pain management and keeping a patient comfortable [at the end of life]. In a hospital, if the physician who assumes care of the patient is not the patient’s family doctor, there is no requirement that this decision involve the family doctor of the patient in question.

Palliative sedation was legal before MAiD. However, even if someone is disabled, they must be given the same latitude as all others – the chance to recover and live. No hospital or Substitute Decision Maker should be allowed to choose palliative sedation that can have only one outcome – death. The voice of the disabled person must be heard.

Palliative care is care given by all those who love. So, when those closest to a person are not allowed the option to give care then something is missing or gravely wrong. In Aunt Mary’s case her voice was ignored.

1 comment:

Anonymous said...

Everyone must create documents that specifically appoint trusted family and caregivers to protect themselves. A Personal Directive and a Power of Attorney, properly and thoughtfully completed are a must in this complicated world we find ourselves in. Deepest sympathy to Mary's beloved niece