Matters of life and death.
In Australia, we are raised to believe that some conversation topics are off limits, such as religion, politics, money and death.
But death is inevitable. In the entire history of human existence nobody has managed to avoid dying – at least so far! So why do we make plans and talk about so many other things in life, important or not, but when it comes to death we remain silent?
Dying to Know Day (D2KDay) was established in 2013 to encourage people to talk more openly about death, dying and bereavement. Senior registrars moving into practice as a registered GP are invited to join Senior Medical Educator Dr Daniel Byrne and myself on D2KDay for the webinar, Death over (e)Dinner: what’s your role in palliative care? to further explore this topic.
According to the D2KDay website:
- 75% of us have not had end of life discussions
- 60% think we don’t talk about death enough
- over 70% of us die in hospital, though most of us would prefer to die at home
- very few of us die with an advance care plan (less than 10%)
- approximately 50% of all Australians die without a will
Why should we talk about death?
When we talk about death and our end of life wishes there are a number of benefits to us, including:
- control over the level of medical treatment we would like
- input into where we want to die
- organisation of our affairs, and
- input into the funeral that would best reflect our own wishes, desires and personalities.
It is not just about control. By talking about death with our trusted family and friends, it provides an opportunity to discuss palliative care. According to a landmark study in the New England Journal of Medicine in 2010, early palliative care in lung cancer has significant benefits including:
- less pain
- less depression
- fewer hospitalisations, and
- extension of life by 3-6 months.
Dr Tim Ihrig, an American Palliative Care Physician, discussed the benefits of Palliative Care in his 2010 TEDx talk which I encourage you to view online.
So why don’t we talk about death?
There are many reasons why this topic of conversation is avoided. The UK’s Dying Matters website details a number of reasons why we may not talk about death, particularly to those that we know are dying.
Some of the reasons our relatives and friends may not discuss death include:
- fear of saying the wrong thing and making matters worse
- fear of loss
- cure collusion (refusing to face the truth, or pretending everything is alright) with relatives, doctors and carers
- fear of what other relatives might say
- the notion that professionals know best, so nothing is addressed
- fear of own mortality
- guilt/shame about what has happened in the past
- denial – “I can’t face the truth of what’s happening”
The ability or willingness of someone who is dying to talk openly about what they’re going through may be affected by some or all of the following:
- fear of being a burden to family and friends
- lack of privacy, particularly in hospital wards
- inner conflict and unfinished business
- fractured, strife-ridden families
- secrets that have never been shared
- denial – “I don’t want to face the truth”
- fear of upsetting relatives
- never been comfortable with discussing own emotions
- trusting the right person (a dying person may choose who they want to talk to, and this might not be a relative, trained nurse or doctor)
Molly Carlile is the Death Talker. In my opinion, such a scary and ominous name belies the person behind it. Molly is a palliative care nurse and approaches any discussion around death with warmth, compassion and sense.
In 2015, Molly appeared on ABC TV’s The Weekly and spoke about her approach and thoughts around talking about death. If you’re interested, you can watch the interview online.
Before I leave you with a final thought from Ernest Hemingway, I encourage you to start the conversation with your trusted inner circle. Sometimes we need help to talk about death.
Every man’s life ends the same way. It is only the details of how he lived and how he died that distinguish one man from another.
– Ernest Hemingway