Are we up for Gillian Bennett’s challenge?

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Mary Ackenhusen | August 27th, 2014

Gillian Bennett created quite a stir last week when she chose to take her life in a very public manner, in order to avoid “becoming a vegetable” due to her dementia. In Gillian’s words: “Every day I lose bits of myself, and it’s obvious that I am heading towards the state that all dementia patients get to; not knowing who I am and requiring full-time care”.

Death at noon

Gillian created a website as a forum to publicize her actions.  This, along with the report of her death in the Vancouver Sun, followed by two op-eds, multiple reader comments and social media posts indicates that she may have achieved what she was seeking.  Why was this private citizen so public about her death?  Her daughter explains that she wants “a conversation, about this”.

My father

I would have paid attention to what this extraordinary woman was saying through her public death in any case as a health care leader.  Her statement, however, hit very close to home as my own father passed away at age 91 on August 4, after over ten years of progressive deterioration triggered by his dementia.  He had “fought the good fight” but was it the fight he would have wanted for himself and his family?  For his last years, while he still knew his immediate family, he required total care, mostly provided by my 85 year old mother assisted by five hours per week of home support.  He could still walk and stand, but needed assistance and cueing for all his daily living and was totally incontinent.  And yet, he seemed content and sometimes, happy.  He had always loved to sing, and he continued to do so.  When I was staying with him, that was what we did mostly—just sing—as it was not possible to have a conversation.  He did have a few phrases that he liked to use.  To any woman young or old (and sometimes men)  he would loudly state: “You’re beautiful!”  It turns out while I grew tired of this pretty quickly and would have to force myself to cheerfully say “thank you!” each time, several of the elderly women and care aides in his retirement community remembered him fondly for this enthusiastic proclamation that they said made their day more cheerful.

In the end

My mom, with the help of a family scattered across North America, did her best to keep him home for as long as possible.  But a week before his death, it was no longer possible as he could no longer stand up on his own, and it now took two people to assist him so that he could walk.  Arrangements were made to move him to a nursing home just five minutes away that specialized in memory care. He passed away a week later.  While he weakened considerably during that week and could no longer walk, even with assistance, he still sang and he still knew his family.Two very different paths to the same end: Gillian Bennett and my father.  If my father had had a choice, would he have taken a different path?

The conversation

I admire Gillian’s intentions—to prompt the conversation around dinner tables, with our colleagues at work and in political circles.  Gillian was very brave to take her own life and to use her death to try to push us to talk about things that make us uncomfortable.  Are we up for her challenge?

As a professional working in health care and perhaps the child of aging parents, what do you think about this?  Is it time for a conversation?

About the Author

Mary Ackenhusen
email iconmary.ackenhusen@vch.ca  

As president and chief executive officer of Vancouver Coastal Health (VCH), Mary Ackenhusen leads the largest academic and tertiary health authority in British Columbia. She is passionate about engaging staff and physicians across VCH in building new models of health care that have potential to be more cost effective and better allow all of us to be more productive, to the benefit of patients and their family members. Mary is an advocate for constructive, two-way communication and through the Up for Discussion blog, invites all members of the VCH community to share their comments, questions and new ideas. View all posts by Mary.

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11 comments on “Are we up for Gillian Bennett’s challenge?

  • Kathleen says:

    Working in the community with clients who have been diagnosised with dementia and their caregivers has provided a personal view into their lives. There have been difficult discussions over the years with collegues, clients and families. As advocates for those who come into our care there are many obstacles such as ageism, medical challenges and the laws, polices, etc. that govern our practise. I am grateful to Gillian and her courage to make her death public so that I can join in the discussions that will follow. Kathleen

  • Colleen says:

    My condolences to those who have lost family members to this debilitating disease. My own father died of pneumonia on August 17 2014 after 6+ years in care with dementia. When Dad died, I believe he was ready to go, very emaciated, and asleep much of the time. But until the last couple of months of his life, I don’t think he would have chosen death. Like Mary’s family, music was an important part of our family’s life, and I would play music I knew he loved from the 1940s – 1970s. He lost the ability to sing, but always loved music. Dad faced his illness with great courage and was always able to smile even though there was a sadness beneath his smile at times. Sometimes I did see Dad cry and this was very painful but I am glad that he was able to share his struggles with me in that way. In the end, Mom and I had to make the decision to not have him transferred to hospital for IV antibiotics as he had become unresponsive over a very short period of time. I think the choice to die is a personal one and we need to be careful not to judge others. I really don’t think my dad would have chosen to die as long as Mom and I showed up regularly and showered him with love and attention (and treats). But in the end, when it was clear that any enjoyment of life was gone for him, we were able to make the decision to let him go. I believe it was the right decision and a loving decision. He died surrounded by love, music and prayer.

  • Mary Ackenhusen says:

    thank you everyone for sharing your stories, and reaffirming the need for a more public discussion around how we can better manage end of life to first and foremost meet our patients’ desires (when we know them) as well as the family.
    I am so keen to require all of us to have informed conversations with our families while we are well as to what we want for ourselves when we can no longer speak for ourselves. The statistics around how often “advanced directives” are available to care givers, even when they have been thoughtfully created in advance, are pretty dismal. There has been a lot of effort in this area, however, and I hope we can start to close the gap.

    • Hopeful says:

      While I appreciate the conversation that needs to take place about death & dying when it comes to ‘health care’ and the health care system it should be in the context of supporting Long Term, End of Life and Palliative Care and while it may have been a courageous act to publicize what she was going thru, it is highly questionable that the act itself would be considered as one of courage.
      Life is not easy, people are not convenient and neither is death or dying but ‘fear’ of death/dying should not be the primary motivation of our actions in as final and far reaching a decision as this. I honestly and deeply question holding up that courage was the primary or principle motivation for her taking her own life.
      A decision like this is routed in ‘fear’. ‘Fear’ of what will happen to ‘me’, ‘fear’ of what I will have to endure and ‘fear’ of the demand that I would put on others. I intuitively understand the fear as I’m sure most or all of us do and, so, yes we need to talk not only about ‘the fear’, but also about the ‘courage’ and hope of loving sacriifice that a good palliative approach offers. I would not call or support the notion/belief that taking my own life is an act of courage. Let’s not mistake ‘fear’ and ‘courage’ they are not one and the same. Pope John Paul II suffered for years thru Parkinson’s as did one of my sisters’ father-in-law. My mother continued to live another 9 months after being diagnosed with ovarian cancer. Their decisions were more routed in the positives of hope and trust of those who were involved in caring for them. As difficult as it was for each one of us, it demanded we come together, pool together, set our ‘selves’ aside many, many times, not just once for the final end, and ‘be a greater part of their’ passing’ or ’dying’. As hard as it was, is, or can be for everyone involved when faced with such great adversity it takes great courage to choose to ‘Live’.

      With an aging population the need for better education, understanding, support and resources around LTC, End-of-Life and Palliative care is more necessary than ever and brings with it far reaching humane benefits to us as a society. Greater attention and efforts should be focused towards this end verses the ‘fear’ routed alternatives of Death-In-a-Package (Euthanasia=Death-With Dignity=Taking One’s Own life=Dr. Assisted Suicide=Suicide) whichever guise it comes in.

  • Greg says:

    Thank you for sharing Mary and my condolences for your family’s loss.

    For me this is a very important topic to discuss and one that is easy to avoid. My father became very ill and passed a little over two years ago. He had a type of Parkinson’s that unfortunately did not respond to treatment. Over the last several years of his life he lost his body but not his mind. He was fully aware and utterly depressed about losing the ability to do simple things like eating food. He was also incredible strong and loved his family especially spending time with his grandchildren. Some days he wanted to die and others he would talk about planning a family trip. We all wanted him around because he was still that same wonderful person inside but it was almost unbearable to watch his body fail him in such dramatic fashion and we wanted him to be at peace. Eventually he refused treatment and passed a few hours later.

    I also admire Gillian’s intentions and feel it’s important to discuss this topic openly and often especially with immediate family. In my experience there’s no time like the present because once the disease hits the family is overcome by emotions and the enormous responsibility of providing/coordinating care for their loved one.

    I am grateful for this open dialogue because it has given me a new sense of focus on this important issue and sharing helps the healing process.

  • sue says:

    Mary, first of all, I am sorry for your loss. Losing a parent is a profound experience.

    I’d like to thank you for weighing in on this polarizing subject. My father passed away earlier this spring after less than a year living in a full-care facility. It had been a hard few years for my mother and the rest of our immediate family, but especially heart-breaking for my Dad. My father was a quiet, determined, thoughtful man and the indignity of losing his cognition, his mobility, and ultimately, his person-hood was hard for him to bear.

    An exquisitely personal choice, we were grateful to be supported by healthcare providers who eased my father’s final days with palliative care that was true to his wishes.

    I believe that my father would have applauded the actions of Gillian Bennett and I admire her family for respecting her wishes.

  • Kathleen says:

    Working in the community with clients who have been diagnosised with dementia and their caregivers has provided a personal view into their lives. There have been difficult discussions over the years with collegues, clients and families. As advocates for those who come into our care there are many obstacles such as ageism, medical challenges and the laws, polices, etc. that govern our practise. I am grateful to Gillian and her courage to make her death public so that I can join in the discussions that will follow.

  • Sandra says:

    A very moving story. I feel strongly that the public has the right to determine their end of life plan. I know that I personally wish to have the choice afforded to me should I desire it. Like Gillian I hope we are able to create a world where we could have the support of society, the medical profession and the law to enact our end of life wishes. Dying with dignity surrounded by those I love is what I desire.

  • Tamara Tuller RN says:

    My father also died after several years of deteriorating cognition. My mother could not care for him at home after a fall and hip repair, but he spent his last years in a small facility that specialized in dementia care. He was a physician and it was painful to see him in the early phase when he was able to recognize what was happening to him with a full understanding of what awaited him. But I was grateful for the extra years he chose to remain with us in spite of it. He had always had difficulty expressing or receiving love and affection, even with those he loved the most and as a young girl I was never quite sure that he loved me or was proud of me. As his tight mental and emotional self control fell away, he was very open to receiving affection even when he couldn’t quite remember who we were, and he extended his love to us easily in return. His great grandchildren born during those years still love him and remember with fondness their visits with their Great Grandpa. It was a healing time for me. I am so glad he did not choose to cut short his years despite his fears of what would happen to him.

  • Laura says:

    A very brave woman was Gillian Bennett. My husband and I have had this conversation with each other many times since his mother passed away with Alzheimers in 2010. It was a slow and agonizing end to a wonderful, vibrant woman. In the end, she did not recognize her own children nor the grandchildren who were the highlight of her life. I know that she would not have wanted that.
    I think what was so important about this conversation is that Gilian made it so public. By having a voice and choice, she made it possible to speak out loud without any judgement. I will make sure that my husband and I include our adult children in the conversation in the future.
    Thank you for your candor Mary, I’m sure there are many who can identify with your questions.

  • Roberta says:

    I’m in my early 40’s with 3 children and a husband. My dad is 67 years old, diagnosed with Alzheimer’s & parkinson’s 2 years ago. One of my fears is how long this will last….because it’s the heartache of seeing a loved one, a father, become so dependant on those around him, where, like a toddler, you are cuing him on what to do next and trying to support my mom who also is grieving, devastated and angry and being the daughter who is grieving and trying to help but also has a busy family and job. It is especially hard to see that my dad knows what a burden he is on his wife. I will be interested to see if my parents bring up this news story, as he does get upset when he sees on the news about dementia patients that are missing… because one of the worst parts right now is that he still knows what’s going on and he knows what he can’t do and what’s ahead for him.

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