Imagine, you have built your life according to your wishes and values. You are in the middle of a fulfilling life, when suddenly a diagnosis brings everything to a standstill.
After the first shock and disbelief you may start to fight, to find new ways to live with this new reality.
But what happens, when someone reaches the end of a medically curable possibility?
Palliative care (deriving from the Latin root ‘palliare,’ or to ‘cloak’) is an interdisciplinary medical holistic approach, meaning it focuses on the patient as a ‘whole.’ It is about the comprehensive care of people with an incurable, progressive and far advanced illness. Palliative care is mostly designed for people who are suffering from a chronic, incurable illness with a short or limited life expectancy.
The goal of palliative care is to alleviate symptoms such as pain, mitigating fear and anxiety and enabling a dignified life by improving the patient’s quality of life. These are the main tasks of palliative care and include - managing physical symptoms – managing ongoing treatment of the illness – providing emotional and spiritual care – providing daily support in their everyday needs (washing, dressing, meals) – extending support to family and caregivers – supporting advance care planning (documentation of wishes and preferences when the illness progresses).
Many people would wonder if palliative care is equivalent to death. No, it is not. Palliative care can no longer cure symptoms, but will try tirelessly to alleviate them. This distinguishes palliative care from curing and healing illnesses. It is advised to seek professional support as early as possible. However, ultimately it comes down to when someone is ready and in acceptance with the progression of their illness.
Most people receiving palliative care are being treated at home as an outpatient or during short hospital admissions. Some hospitals have highly specialized palliative care departments. Some patients prefer to be admitted to a hospice for their last journey. Every single person is treated according to their needs, abilities and circumstances. Their care is totally personalized and always aiming to improve their quality of life in the best possible way.
End-of-life care is usually provided during the last stage of palliative care, when the illness is so far advanced, and the patient is believed to be in his last 12 months of life.
One of the most well-known public figures fighting cancer in the United Kingdom is Dame Deborah James. She is a London based journalist who got diagnosed with Stage 4 bowel cancer in 2016 at the age of 35. Her life suddenly was thrown upside down with two young children and a husband. She has become well known as she is documenting her journey and illness progression with bowel cancer on Instagram, where she has more than 719k followers. She created her own blog “Bowelbabe” and presents the BBC podcast “You, Me & the Big C.”
Since then, she also wrote a book called “F**K You Cancer (2018)”. Deborah has set up a fundraising page on “Just Giving,” where she has raised over £6m. The money donated will go towards funding clinical trials and research that could find a cure for cancer. On Friday 13th of May, Mrs. James became a Dame, after Prince William, Duke of Cambridge, visited her in Woking, Surrey, where she is receiving end-of-life care at her parents’ house. Prince William personally handed over the honorary title. Under a post on Instagram she wrote on the same day “Prince William actually came to our family house today!! I am utterly honoured that he joined us for afternoon tea and champagne, where he not only spent a generous amount of time talking to my whole family, but also honoured me with my Damehood.”
It seems that Deborah James is very tragically approaching the final stage of her illness. She is now receiving hospice care at home, where she is being cared for with palliative care during her end-of-life care trajectory. What is the most touching is the strength she is still finding despite being in the most difficult time of her life. She wrote on Instagram “My family are amazing and as emotional as it all is, we are finding so much to smile about in the sadness. I may be getting weaker and more tired having run off pure Adrenaline, but I always said I wanted to slide in sideways when my time is up, with a massive smile, no regrets, and a big glass of champagne! Still my intention.”
Dame Deborah James is truly a legend. A hugely powerful personality, an inspiring example of how to live life to the fullest, despite the deepest tragedy. How not to despair, but to find a new alternative, a new purpose, new ways to live, by including destiny into her daily life… reaching out for the light with a hopeful smile.
