Christina was 68, two years into retirement and living the ‘sea change’ dream when she suffered a brain aneurysm at home. Concerned but conscious and lucid she packed her bag, alerted her neighbour, called an ambulance and presented to emergency.
Her medical team deemed her condition to be serious but treatable. To address the bleeding, surgery would be required. Still clear and lucid, with her family at her side, Christina agreed to the surgery. During the operation Christina unfortunately suffered a subarachnoid haemorrhage, a massive bleed in the brain. She never regained her ability to talk to her family again.
What would normally happen in a situation like Christina’s is that doctors and loved ones would be left to make anguished decisions, not knowing the patient’s wishes. In most situations the person would never have discussed dying or end-of-life care with their loved ones, let alone crafted a document carefully articulating their preferences for care.
But Christina was far from an ordinary woman.
Planning for the future, living in the moment
Having raised four sons as a single mother, Christina was a strong, vibrant and independent woman. For Christina, being self-reliant and independent meant everything. She returned to study her MBA in the 1980s, before they became fashionable and available online. She went on to forge a career in the public service.
While still working in the public service, and three years before her life-changing medical emergency, Christina wrote an advance care directive – a legal document outlining what outcomes she would consider to be unacceptable and the medical treatments she would accept or refuse, if ever she was unable to articulate her thoughts for herself. For Christina, advance care planning was all part of being an organised and responsible adult; not surprising for a woman whose friends would tease her about her passion for spreadsheets.
But it was more than that. Documenting her wishes was an opportunity for her to be clear about how she wanted to live and what she valued most. For Christina it was important that she avoid a scenario where she was overly dependent on others for her care, or where others were left to make choices about her care without knowing her wishes.
Christina dutifully wrote her plan, stored it safely and hoped that it would never be needed - at least not for a long time. Christina had plans to live to 100. Her mother had lived into her 90s. Retirement was looming on the horizon and a move to a close-knit beach side community was a few short years away.
A statement of values
Christina’s advance care directive is a simple but astonishingly clear declaration of who Christina was. To read her directive is to hear her voice. It evokes a strong woman with ambitions to live a full life, with equal parts adventure and with her own words describing her spirituality. The words in her directive reflect a person sensibly and thoughtfully making provisions for her advancing years.
“I am now looking forward to the next phase of my life…following the completion of my professional life in public service…I am currently designing my new home, based on ‘ageing in place’ principles. I enjoy this process and look forward to building my new home and living in this beautiful environmental location.”
I am a woman of creation, soul and manifest. This is my spiritual philosophy. Maintaining good health is important to me, keeping fit and independent”
A family faces tough decisions
At Christina’s hospital bedside, with her sons and family members beside her, Christina was assisted to breathe through a tube. She remained mostly unconscious. Initial hope and optimism in the first few weeks slowly gave way to the growing realisation that Christina would not be restored to the person she was, even if her body somehow pulled through.
As part of her diligent advance care planning, Christina formally appointed one of her sons as her Medical Power of Attorney. This meant he was her representative decision-maker and had access to her advance care directive. With each day at their mum’s bedside, it was becoming increasingly apparent that the document would be needed.
“For mum, life was about more than just having a heart-beat. It was vital that she could be active, connected and have a purpose. She articulated this with extraordinary clarity in her advance care directive. There was no ambiguity about what she would want,” said one of Christina’s son.
Christina had written the following as part of her directive:
“If I suffer a stroke or accident where my recovery is uncertain or it might resemble my unacceptable circumstances then I do not want any medical treatment to cure or prolong my life. Let me go.”
Around four weeks later, guided by her advance care directive, Christina’s sons and the medical treatment team made the difficult decision to ‘extubate’ her. This meant removing her breathing tube and all other life supports. 24 hours later she was transferred to a palliative care unit. It offered a comfortable and home-like environment which welcomed friends, family and grandchildren so Christina could be given a loving and peaceful goodbye, without tubes and beeping machines. This was the type of place Christina had specified in her advance care directive. She died shortly after.
Christina had written:
“A good death to me would be to die in a specialist palliative care environment created within my own home – if this is not possible then a specialist palliative care unit within a reputable and accessible hospital. It is important to me that my physical appearance is attended to and I am kept pain free and gently nurtured at this time.”
Not only did Christina’s plan give instructions on how Christina wanted to die, quite poignantly the document gave instructions on how her death should be grieved.
“I want good support for family and friends so they can grieve well and let go”
A family united by Mum’s plan
Christina’s sons are grateful that their mum had the foresight to write an advance care directive. Losing Christina was hard. She was a much loved mum and engaged grandmother. But having to make life and death decisions without expressly knowing her wishes would have been even more heartbreaking. It would have been an unnecessary burden during an already emotionally-fraught time.
Inspiring others to plan ahead
Sharing this story is important to Christina’s sons.
Christina was a staunch advocate for advance care planning and would tell everyone how important it was. Her sons hope that other families are inspired by Christina and feel compelled to get their affairs in order. Because as Christina’s family has learnt, lives can change in an instant.
As one of her son’s explained,
“Since Christina died we have spoken honestly and openly with friends and family about the importance of advance care planning and have encouraged them to think about and discuss their wishes. We’ve had some frank conversations with our partners and intend to write our own advance care directives.”
“It’s been more than two years since our mum died. We miss her every day. What makes it easier is knowing that we honoured her wishes. In the end, advance care planning saved Christina from a life she would have found unbearable and we are thankful for that.”