For most of us, death conjures up strong feelings. We project all kinds of fears onto it. We worry about it, dismiss it, laugh it off, push it aside or don’t think about it at all. Until we have to. Of course, death – our own, a friend’s, a family member’s – will arrive sooner or later, and when it does, we are forced to confront it, whether we like it or not …
Despite all progress in “normalising” death and dying from a medical perspective, making it something that patients and families can talk about together, they all too often remain taboo – no-go areas shunned as legitimate topics in polite circles. Western societies continue to have a strained relationship with the concepts – and realities – of death and dying.
I’m involved in a three-year study in Queensland of doctors’, nurses’, patients’ and families’ experiences of managing and recognising medical futility as well as facilitating the transition to end-of-life care. We’ve already found that doctors, patients and families often work together to resist futility. They don’t want to tell families to give up hope. This reluctance to look death in the face can delay a shift toward more appropriate life-improving care at the end of life.
So why is it so difficult for us to talk about death? One argument put forth over the last few decades is that dying is increasingly alarming in modern societies given the lack of rituals surrounding it. With ever fewer people holding religious beliefs, so the argument goes, there is crisis of meaning around death and dying.
In contemporary Australian life, on present trends, “no religion” will be the most popular response to questions about religion in the 2016 census. In increasingly secular societies, cultural taboos form a protective layer against the dreaded inevitability of death.
Others insist that such arguments are simplistic and don’t take into account widespread variation in beliefs about death and dying. Certainly, in Australia Indigenous beliefs around death and dying remain organised and meaningful.
New forms of spirituality have also taken hold in many western contexts around death and dying. For example, the 1992 Tibetan Book of Living and Dying by Sogyal Rinpoche introduced new understandings of consciousness after death, gaining widespread popularity as an alternative to other dominant religious frameworks.
Yet, in healthcare we continue to see “death denial” in action, along with its serious consequences.
In a 2008 study of chronic heart failure people were shown to overestimate their life expectancy by a full three years. This kind of optimism was also shown in a 2011 study of lung cancer patients who were deemed to have inaccurate perceptions of the purpose of their treatment (i.e. cure versus palliation) and their chances of mid to long-term survival.
Is this about faith in medicine? Or do doctors and patients collude in unwarranted hopefulness? Or perhaps it is a cultural denial of death? Our research would suggest it is probably all of the above.
Despite establishing futility and the actual referral for end-of-life care being the doctor’s decisions, we’ve discovered that Australian nurses often have to informally intervene to ensure patients get the timely end-of-life care they need. A polite tap on the doctors’ shoulder to let them know the patient has in fact had enough and can’t take any further medical attempts at life-prolongment.
Our tendency to think we will “beat the odds” is risky – and may mean that we are not being properly prepared for death.
These days, palliative care doctors and nurses can make a significant difference to our quality of life and death, with a 2010 study showing that if doctors refer patients earlier, acknowledging the point of futility, it can actually extend life rather than representing a “loss of hope” or process of “giving up”.
But the shift to palliative care relies on a preparedness on the part of doctors, patients and families to accept that the dying process has begun.
Acknowledgement of dying also relates to the level of influence we are able to have over the circumstances of our deaths, and this includes place of death. Fewer than 20% of Australians actually die at home – earlier discussions of futility and dying enhance our capacity to express our preferences, including for place of death.
There are other layers of complexity to consider. Assisted dying is unlikely to be formally supported in a hospital, hospice or aged-care facility in Australia, regardless of personal preference. And early recognition of dying by patients and families will allow more time for financial matters to be sorted, not to mention allowing more time for the person involved and their loved ones to come to terms with the reality of death.
It’s often the economically less well off who suffer disproportionately in dying process. Despite Mark Twain’s famous suggestion that death is “the great leveller”, it’s not.
How and where you die – home, hospice or hospital – is heavily dependent on your wealth, geographical location and whether you have private health insurance.
These days, private cover extends to specialised palliative care services, providing a level and quality of care not always available in the public sector. Death denial will thus adversely impact on the most vulnerable in Australian society.
Taboo or not, death and dying are part of a conversation we all need to have. If nothing else, doing so will ensure our choices are respected at the end of life, the best death possible for each of us is within reach, and the vulnerable do not suffer.
Denial has its advantages – protecting us from things we are not ready to face. But it’s now the major barrier to ensuring that a life otherwise well-lived ends with a good enough death.