Death is inevitable, yet rarely is it planned for. Professor of Cardiovascular and Chronic Care Patricia Mary Davidson argues the importance of dying with dignity and without suffering.
Benjamin Franklin famously said, ‘In this world nothing can be said to be certain, except death and taxes’. As in the case of avoiding taxes, the consequences of avoiding the certainty of death do not disappear.
Though we are fortunate to live in an age and a country where infant mortality is rare and longevity common, heart disease, stroke, cancer, diabetes and chronic respiratory diseases are widespread and the most frequent causes of death. In fact, many of our modern health care problems are a consequence of our lifestyle and successes.
Advances in medical science may have made our world a better place to live, but they have also caused patients to view death as the enemy. For health professionals, the end of life is often a sign of failure.
Our increased longevity has come at a price – many people live for an extended period, often suffering from symptom-burden from the disease, its treatment or both. Cancer, once considered an imminent death sentence, is now fortunately a chronic disease where individuals can live for decades in remission and often for many years with metastatic disease.
In our death-defying society, where countless individuals are devoted to the preservation of youth and beauty, we often hide the reality of the process. We even avoid the word ‘death’ using phrases such as ‘deceased’ or ‘passed away’ instead.
The sad truth is that life will end for all of us, yet this reality is commonly avoided, hidden, shunned and, as a consequence, often managed badly.
Though the government is spending an increasing proportion of our gross domestic product on health, particularly in the last two years of our lives, this does not delay the inevitable. An increasing volume of data tells us that many individuals die badly – suffering and without dignity. In a civil society this is unconscionable and there is an increasing ground swell of advocacy and reform challenging the way we allow people to die.
A clear signal of our failure to manage the certainty of death is the low number of people who achieve their wish for their place they die. Up to 90 per cent of those with advanced cancer or other life-limiting illness prefer to be cared for at home. Yet for many Australians this is either impossible or not enabled. It’s a complex situation, related to the decreased access extended family have to provide care and also the fact that death and dying, despite clear prognostic signals, is poorly planned for.
Currently, only about 16 per cent of people die at home, 20 per cent die in palliative care facilities and 10 per cent in residential aged care facilities. The majority of our community die alone in hospitals without the people they love. Often they receive unnecessary and medically futile treatments.
The extreme position to this discussion and debate is euthanasia – but this is a highly contested and debatable stance. It suggests that death can be planned for, controlled, staged and timed, but it does not negate the certainty of death. Even in places where euthanasia is legalised, uptake is not high.
As an option, it’s an overly simplistic solution to the complexity of managing the myriad of physical, social, psychological and spiritual symptoms at the end of life. It also denies the potential to experience hope, joy and meaning even in the last days of life. In our daily work, health professionals are constantly amazed at the will of individuals to live and how desperately people hang onto life.
We plan extensively for many life events – birth, marriage and retirement – but death frequently catches us unaware. We are often propelled into this reality without foresight and with limited skills for navigating a complex domain of health care, legal issues and interpersonal relationships associated with grief and loss.
Fighting and resisting is futile as we cannot avoid death, neither for ourselves nor the people we love. But what we can do is promote situations and environments that decrease suffering and uphold dignity. We need to promote choice and control for individuals and their families. How we address this is by having conversations. Many are difficult and painful, yet they can also be liberating; an opportunity to expose our deepest thoughts and fears.
In addition to talking about and documenting our plans we need to identify people who can enact our wishes and advocate on our behalf. The formal term for this process is advance care planning (and you should go to Google straight away and start your planning).
The challenges for promoting effective care at the end of life are complex and involve the need for health care reform and the training of health care professionals.
Adequate pain management and access to quality palliative care is a fundamental human right, yet it’s not something we can guarantee for all Australians, especially those in marginalised groups, such as rural and remote Australia, the elderly and Indigenous populations.
Palliative care as a person-centred approach, which affirms life and decreases suffering, should be seen as an integral dimension of all health care settings. But the enactment of this approach to care is largely dependent on us all as individuals. We need to plan for the contingencies and also demand quality care for ourselves, families and communities.
Having the difficult conversations with our families and health professionals are the best insurance that we will die according to our wishes. It also drags the conversation from behind the curtains to normalise the discussion of the certainty of death and the potential for individuals to die comfortably and with dignity.
Living well and dying well should not be seen to be mutually exclusive. They are part of the rhythm and pulse of life.