Dr Kathryn Mannix is a Palliative Care consultant based at the Royal Victoria Hospital in Newcastle, who began the UK’s first dedicated palliative care CBT clinic.
‘We’re all going to die!’
No, not a scary action movie, but life. We have been dying for millennia and notwithstanding medical advances, the death rate remains 100%. And yet, despite so many opportunities to study the phenomena around dying, most doctors are unable to describe the process that takes people out of the world.
What a contrast with the processes of pregnancy and birth, to which magazines, shops and websites are dedicated; lessons are delivered in schools; couples are invited for ‘birth practice’ sessions as the due date approaches… Perhaps not all of these analogies are directly transferable to the process of dying, especially as 50% of candidates will expire suddenly, but dying is a recognisable process and modern medicine has largely forgotten it in the rush to postpone it.
Birth rehearsal is about managing expectations. It is designed to enable mother and birth partner to anticipate and plan for the process, to understand its various stages and thus to encounter them with more understanding and less fear, particularly for first-time mums and partners.
For most people, approaching their own death is a first-and-only time event, and pre-event preparation is possible. Describing the likely process of dying to a patient with a terminal condition may be the only helpful contribution we can make at a time when their progressive decline no longer responds to our most cutting-edge medical management.
A century ago, it didn’t take a doctor to describe what to expect: by their thirties, most adults had seen many deaths in children and babies, in young adults, and in the aged. There was both public awareness and medical wisdom, now lost as medicine has advanced and public expectations about disease-management and life expectancy have changed. Once unmentionable, talk about sex, pregnancy and birth have become accepted and even publically celebrated, whilst fear and fantasy now shroud the new taboo of dying. The public avoids discussion of death apart from horrid fascination with the atypical and lurid; the health professions see death as a systems failure rather than life’s inevitable, if occasionally postpone-able conclusion.
During a career in which I have participated in deathbed care of many thousands of people, I have had time to hone a script for ‘what to expect while dying.’ It has been well used over many years, and shared amongst palliative care colleagues who have adapted it to make it their own; it is always slightly different, tailored to the condition and the particular concerns of the people I am talking to; but understanding dying is its central thread, and it has never left a patient or family more distressed at its conclusion that they were when our conversation began. Usually it results in relaxation, relief and a request to repeat the message for loved-ones.
The script generally moves, at the patient’s pace, from acknowledging that dying will be the eventual outcome of this illness, into seeking permission to explore what fears the patient and family have about dying and death; acknowledging and discussing advancing weariness, through the need to use sleep as a ‘battery-recharging’ tool; onto prognosticating in an imperfect way, using rate of loss of energy and vigour as the principal marker of a life expectancy perhaps initially of years, later shortening to months-to-years, weeks-to-months, days-to-weeks, and eventually a recognition that only days or even hours are left to live, depending on how quickly energy-levels are falling; into how prognostication gets more accurate as dying approaches, and the fact that many patients have a more accurate sense of time getting short than so-called experts; and moving into what we see around a deathbed: the sleepiness, the gradual loss of consciousness that is not the same as sleep, the changes in breathing, the gentle cessation of breath; the sadness and yet the reassurance of a family that has witnessed the death and found that it was not frightening even though it breaks their hearts. This conversation leads naturally into other important considerations: how we will be vigilant for symptoms that disturb your peace of body or mind; how we will use medications if you are too weary or sleepy to swallow; how the stopping of the heart in death will not be mistaken for a ‘cardiac arrest’ that requires crashing and futile medical interference.
This conversation has some interesting sequelae. Knowing what to expect as death approaches releases many people from anticipatory anxiety, from fear of going to sleep lest death snatch them unexpectedly (which is an interesting fear, given the commonly-stated preference for ‘dying in my sleep’); from concern that they may miss the chance to say goodbye to their loved ones, or fail to make the preparations for death they intend to make ‘when the time comes.’
Knowing that their caring team will be able to recognise the very last days and hours of life also offers patients, and their loved ones, hope that any symptoms that may arise to disturb their calm will be anticipated or recognised and dealt with, and that experienced support will be made available to them. The family will not be left to wonder and worry whether the end is approaching: we, their health-care team, will keep them informed and able to play their part in the closing of the patient’s life.
Dying people deserve our best and most expert care. There is usually only one chance to get it right. Because we no longer talk about or pride ourselves on managing dying well, the art is fading both from medical practice and from public recognition. And yet, like birth, death is predictable, manageable, bearable: we can discuss it in advance; and we can be accompanied and talked through it by a wise midwife, someone who recognises the pattern as it repeats for each closing life.
So why wait until someone is approaching death before we break this good news? It’s time to talk about dying.
Image credit: Martin Hesketh