Reviewed by Asanga Judge
Dr Rachel Clarke is a specialist in palliative medicine. She has often been in the media during the Covid-19 crisis talking clearly about what is needed in terms of provision of PPE, perspectives and compassion.
Asanga Judge is a former GP.
I am not easily moved to tears, so the fact it happened to me repeatedly when I was reading this book is a mark of Rachel Clarke’s profound compassion towards her patients, in her capacity as a palliative care specialist running a hospice for terminally ill patients.
As a reaction to some of the awful experiences she had during her early medical career, for instance, people dying in terrifying and undignified circumstances, she decided that she intended to do everything she could to make her patients’ last days comfortable, peaceful and fulfilling.
One example was Ellie, in her early 20s with aggressively metastatic breast cancer that was causing her organs to shut down rapidly. She desperately wanted to get married with her family and friends present. She asked Rachel, ‘Can you keep me well enough to make it to Thursday?’ – that was in two days’ time. Rachel knew all she could do was to promise to try. She used all her medical skills to keep Ellie alive for the next two days and then to give her enough strength to manage the ceremony. As the final moments of the ceremony took place – Ellie was momentarily transformed ‘from a dying woman to a luminous young bride on her wedding day – radiant, ecstatic. Her cancer vanishes. And everyone sees it, everyone feels it – the world falling away until only one thing remains: two 20somethings getting married with beaming smiles. Ellie dies the next day, held by James and still wearing her dress of white chiffon.’
‘Living does not stop because one is dying.’
I have selected this quote from the end of the book because I think it creates a very welcome and inspiring picture of how the life of dying people in this type of palliative care is not typical of the generally held view of hospices. They are still viewed as places to die rather than places to live well until you die. And even in today’s progressive climate of death cafes and end of life doulas, there is still reluctance in our society to discuss the subject of dying.
‘If there is a difference between people who know they are dying and the rest of us, it is simply this: the terminally ill know their time is running out, while we live as though we have all the time in the world. Their urgency propels them to do the things they want to do, reach out to those they love and savour the moments of life still left to them. In a hospice, therefore, there is more of what matters: more love, more strength, more kindness, more smiles, more dignity, more joy, more grace, more compassion – than you could ever imagine. I work in a world that thrums with life. My patients teach me all I need to know about living.’ Rachel Clarke.
For me, one of the most important issues dealt with here is how fear and misunderstanding around death and dying, cause a lot of anxiety and potential, yet avoidable, suffering. That simple listening and communication around each person’s individual circumstances are at least, if not more, important than the use of sedatives and analgesics. Death remains a taboo even for doctors. And I speak here as one of the profession myself. Traditional medical teaching has always been focused on the ability to cure illness. Palliative care was, and still is among the profession as a whole, associated with failure. Because of this, the subject of caring for the dying patient has been woefully neglected in the teaching schedule.
Rachel Clarke also explains how for most people in a hospice their final days pass very much in the same way: gradually sleeping more and slipping into deeper unconsciousness. I imagine that prior knowledge of this, which many may not have, would be a blessed comfort. It was for me.
I cannot over-emphasize how much I was affected and inspired by this book. It even motivated me to discuss my own death with my daughter and let her know about practical matters such as my financial arrangements, which she found useful as well an indication that I was looking after her for the future. I am almost 77.
I think everyone should read it.