Today I finished a book that made me want to pump the air with passion and in equal measure sob at the beauty, compassion, and love that was written on its very pages: With The End in Mind by Kathryn Mannix. It features all of the things that need to be spoken about more easily in everyday life: the process of facing the end of either your own life or that of a loved one.
We will all die at some point. This fact is indisputable but, as the years have gone by, our reluctance to talk about this topic has risen to such a degree that we don’t often hear of people broaching such a subject in everyday conversation. Even when circumstances dictate that this discussion should take place to provide clarity and peace of mind, there is a lack of courage put forward to avoid the distressed from feeling isolated and alone.
Attempting to break this taboo topic has brought about national annual events and regular meetups that are being led by the worldwide phenomenon that is known as the Death Café.
However, there is still a feeling that we drastically fall short when this conversation actually matters the most. Guidelines tell us that a patient should be offered a whole range of support when given the prognosis of only a short period of time left to live – spiritual, emotional, physical, and psychological with an emphasis put upon the latter two areas. But are we offering this to all who are living with a progressive and terminal illness?
Our passion to survive against the odds means that many people are being needlessly admitted to hospital for interventional procedures that may be doomed from the start instead of being provided with the peace and support to die in a surrounding they are comfortable with and surrounded by those who love them. And all because even the clinicians taking care of us are afraid to face the D-word. Death. It is observed as failure; yet when the time has come, there is no other choice.
So, what are we afraid of? While those who are older are indeed generally more accepting of death, there are still barriers that actually prevent us from living out a ‘good death’ because we simply do not talk about our wishes. We do not want to face the prospect of living without our loved one, but probability tells us that it will more than likely happen. And by being unprepared we will actually suffer more from the silence shared. Patients fear pain and of being a burden. They get angry at the loss they will face and, ultimately, they withdraw from a society that no longer knows how to communicate with them because it lacks courage to face the facts.
Death is not a disease, it is a fact of life. And, as such, it needs to be in some respects celebrated rather than feared.
The introduction and rise of hospices in our communities have put the onus on this ideal of death – more often than not we hope that we will die without pain, maintaining some resemblance of our quality of life and dignity even in our final days, as well as ensuring that the healthcare workers around us continue to assess the potential psychological support we may need. Similarly, we want to have our affairs in order, our funerals planned, and our finances tied up and we want to know that the ones we leave behind will be safe without us. However, can this be achieved if we do not talk about death until it may potentially be too late?
And shouldn’t we provide the patient with the opportunity to talk out their fears rather than shun them because we find the topic too hard to deal with?
The significance of cancer-related deaths affecting our population over the last decades has called for an urgent review on how we offer palliative and end of life services so that we can reduce the distress for all those involved. Though difficult to introduce, starting this conversation with patients earlier provides a greater outcome as they see out their final months, weeks, and days, enabling them to come to terms with their illness and essentially have more time to tie up all the loose ends that they may otherwise ignore.
Some of you may, unfortunately, be dealing with this topic in your life, but, for those who are not, why not consider expressing your wishes to your loved ones, attempt to open the door to that conversation, and see how it can perhaps provide you with comfort rather than fear. Don’t they say we should face our fears, stare them right in the face? Try staring death in the face. It may not escape us, but it does not mean we have to suffer in silence.
Katie Bagshawe is currently a Student Diagnostic Radiographer at the University of Derby. She holds an MSc in Psychology from Sheffield Hallam University.