Overcoming our reluctance to talk about death with our families and loved ones might ultimately help more of us die a "good death" when our turn comes.
A couple of generations ago, most Australians died at home, surrounded by family members and in the care of a local GP who had probably been their doctor for years.
But then came the development of intensive care units (ICUs), along with new medications and procedures that could extend life for a few weeks, or months, in even the terminally ill or very old.
Gradually, the end of life changed from being a domestic affair to a highly technological one.
Instead of spending our last days quietly slipping away in the company of those we love, most of us now spend them in the impersonal environment of a major hospital undergoing interventions that may be of questionable benefit.
In fact, some doctors suggest the quest to keep dying patients alive for just a little bit longer could have gone too far.
For many patients, they say, the best option in the last weeks of life may be, not the interventionist environment of the ICU, but palliative care – care that is designed to relieve pain and other distressing symptoms, giving a dying patient the best possible quality of life over the days and weeks they have left.
Unfortunately, our reluctance to talk about death means this option is not always offered to patients or their families.
Treatment or distraction?
Cancer specialist Dr Ranjana Srivastava has worked with terminally ill people for many years, and has recently written a book in which she questions the way the health system treats people at the end of life. About one young man with aggressive gastric cancer, she writes:
"He knows he is dying. We know he is dying. But it is the elephant in the room we are reluctant to acknowledge while we find ourselves distractions that will carry us into another day."
Those distractions consist principally of what Srivastava describes as "an astounding array of tests", tests that often cause unnecessary suffering, and the main aim of which seems to be to allow everybody involved to deny the reality of imminent death.
The young man whose case is described in Srivastava's book, Tell Me the Truth: Conversations with my patients about life and death, did not achieve his desire to spend a few brief hours out of the hospital, to feel the spring air on his skin, and to go to church one last time.
Instead, as doctors talked of performing an almost certainly futile liver biopsy, he put an end to the medical interventions by dying in his hospital bed.
Have the conversation
Srivastava believes all of us – old or young, sick or healthy – should do our best to avoid such an outcome by talking to our loved ones about the way we would like to be treated at the end of life.
"All of us should be having the conversation when we are well and cognitively intact," she says.
In her work with terminally ill patients, Srivastava has been surprised at how many families, confronted with excruciating decisions about a bewildering array of treatment options, have no idea what the dying person's wishes would be.
"They just don't know, even after 50 or 60 years of living with someone," Srivastava says.
Advanced care plans
One way to set out how you want to approach the end of your life is an advanced care plan (also known as an advanced care directive or 'living will').
Writing an advanced care plan involves you and your loved ones discussing, planning and documenting your wishes in relation to medical care and treatment, should you develop a terminal illness or have an accident.
Australian research has shown that people who have these plans are more likely to get the kind of care they want at the end of their life.
The study, published in the British Medical Journal, also found that family members of those with advanced care plans experience less stress, anxiety and depression.
Dr Karen Detering, the study's lead author, says we may not know the details of the medical care that we want at the end of life, but advanced care planning encourages people to think about what is important to them and how that influences your choices.
"Most of us are in a position where we can say: if I couldn't communicate with my family and friends then I don't want you to provide a treatment that would save my life."
But trying to talk to our loved ones about death is very difficult and makes most of us very uncomfortable.
Detering agrees it's not a great conversation topic for the dinner table, but says it may be easier to have the conversation than you think. She also recommends being open to opportunities that might allow you to have the conversation with a loved one, such as: after a visit to a doctor or specialist,at the beginning of a new medical treatment,following the recent death or illness of another close friend or loved one.
Once you have had these conversations, it's a good idea to document your plan. (See here for the relevant state-based info.) It is also a good idea to discuss the plan with your doctor and to review it regularly, experts say, as your views may change as you age or are faced with certain health conditions.
Srivastava would like to see her medical colleagues become braver about raising the subjects of death and palliative care with patients. Such conversations are not about abandoning hope, she says.
"I don't think you should ever give up on hope," she explains. "We talk about hope only in the context of being able to cure the patient, but I think we need to move beyond that.
"I find that giving hope to my patients is about letting them live out their life with dignity, and helping them to connect with their families."
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