How to act around the grieving
When Justin Middling slumped to the floor during a university lecture, his peers thought he was mucking around.
The 33-year old was dying.
By the time his friends realised he was not joking, by the time paramedics navigated the stairs to the lecture theatre and by the time they got him to hospital, he was brain dead.
''They call it sudden adult death syndrome, where a seemingly perfectly fine young person drops dead,'' says his sister, Bronwen Fallens.
Eleven days later, Fallens and her mother made the decision to turn off his life support.
''We were lucky we got to be there. I held him in my arms as he passed and had his favourite music playing,'' she says.
The reactions of her friends to the death were varied, she says. Some rallied around her. Others made comments the 39-year-old says shocked and hurt her.
''Some people lose babies,'' one friend said.
''At least he got to 33.''
Another friend compared the death to going through a divorce. Others said nothing at all.
''They're scared of catching it, your misery,'' Fallens says. ''They think if they get too close to it, it will rub off on them. I ended up shedding the friends who couldn't understand.''
Grief can be like having a mental illness, she says.
''I was in a world of misery. You're not yourself. Some people seem to think you should snap out of it and they judge you for grieving for so long.''
When her father died with dementia a year later, aged 74, Fallens says she received an entirely different reaction. Some people didn't even send flowers or a card.
''It is as though you're not expected to be sad because he was old and sick and it was for the best, people say. But he was my father. I have lifelong memories of him from when I was a baby, long before he got sick.''
In parts of southern Africa, there is a period of mourning following a death that lasts for one week. The bereaved show their grief, wearing the colour black or shaving their heads. In Vietnam, there is a period of mourning of up to three years, depending on the person who died. While Maori tangihanga see family gather together around the person who has passed for days, not hours.
Robyn O'Connell, a grief counsellor and funeral celebrant for 30 years, has conducted more than 1000 funerals. She believes the time in which many Australasians are expected to organise a funeral is too fast and hinders the grieving process.
''We have a three-day average between the death and the funeral, and in all the racing around, seeing funeral directors, collecting belongings from the nursing home, organising photos, issuing death notices, people don't have time to properly grieve and process,'' she says.
''Then, I call the three to six months after a funeral 'the wasteland'. The initial support has dropped off. Everyone else gets on with their lives at your lowest point, when the reality is setting in.''
A study published last month in the Journal of Experimental Psychology: General found mourning rituals after the death of loved ones reduced grief and benefited people who believed in rituals as well as those who did not. Although the specific rituals differed widely according to culture and religion, the study found there was a common psychological mechanism underlying their effectiveness: regained feelings of control.
But funerals in Western cultures are often less ritualistic and have shifted from being solemn affairs of mourning to focusing on celebrating life, O'Connell says. Wearing black had been shunned for brighter colours, and ''death'' in funeral readings had been replaced with words such as ''loss'' and ''passing''.
''Half of funerals are now done by celebrants because the pendulum has swung from mourning death to celebrating that person's life,'' she says. ''I have started to see people feeling guilty about mourning someone who had a long and wonderful life.''
At one funeral for a 100-year-old woman, the 82-year-old daughter, crying in the front row, was reprimanded by her son. At the lectern he said, ''Mum, she was 100 years old - she had to go at some stage.''
''I thought, 'But she's had her mum for 82 years,''' O'Connell says.
''Someone may have had a long life but that doesn't take away from the fact they were a pivotal person in a family who is now no longer there and we need to acknowledge that.''
O'Connell says the discomfort people feel facing death has not changed much since her baby daughter died of sudden infant death syndrome in 1979. Women would cross the street rather than talk to her and be forced to acknowledge her loss. One person told her it was for the best because her daughter had spina bifida.
''We still put it in the too-hard basket,'' she says. ''People think, 'How do I approach someone who has experienced a death? Well, I just won't.'
''Even less than 5 per cent of people who know they are dying will actually organise their funeral. People don't feel comfortable confronting the topic.''
When someone dies, their family members may feel that their role has changed, O'Connell says. When her daughter died, she says she no longer fit in with her friends who had children, but she was not the same as those who had never had children, either. Was she still a mother? ''That is why support groups are so good for people who have suffered a loss,'' O'Connell says. ''When you suffer a loss, you can also become lost.''
In 1969, the idea of ''five stages of grief'' became popularised when author Elisabeth Kubler-Ross released her best-selling book On Death and Dying. But the five stages she described - denial, anger, bargaining, depression and acceptance - were based on Kubler-Ross's interviews with the dying, rather than those who experienced the death of a loved one. Despite being a hypothesis, the five stages have become embedded in our culture.
Researchers have since shown that humans do not go through neat stages of grief, which almost implies a schedule of mourning. In 2011, Ruth Davis Konigsberg released The Truth about Grief, which directly challenged Kubler-Ross' theory.
The way people grieved depended on their personality, as well as the way their loved one died, Konigsberg argued.
While On Death and Dying focused on processing the negative emotions associated with grief, Konigsberg stresses the importance of positive emotions and their pivotal role in the grieving process. There is also no standard time for which people grieve, she argued, though it took an average of six months for acute grief to pass.
It is why workplaces that allocate bereavement leave according to how close in blood you were to a family member are problematic. Two weeks for the loss of a spouse, two days for the loss of a grandparent. It does not allow for individual experiences of loss or recognise that emotional closeness to family members varies.
At the Australian Psychological Society Conference held in February, a professor of counselling psychology at Santa Clara University in the US slammed the American Psychiatric Association's new diagnostic manual, DSM-5, which allows a diagnosis of depression after two weeks of grieving.
''I personally think a year is the minimum amount of time before a disorder should be diagnosed, if we do medicalise this universal human experience,'' Professor Dale Larson told the conference.
The manual undermined the legitimate feelings of the bereaved by labelling grief a disorder.
''Now it becomes a target for drug development,'' he said, adding that he was concerned that doctors would increase their prescribing of antidepressants as a result.
But the medicalisation of grief could also be beneficial by giving grief social legitimacy, argues a community consultant for victims of traumatic loss, Darcy Harris, who is also a professor of psychology at the University of Western Ontario in Canada.
''If a bereaved individual meets the criteria for this particular manifestation of grief, she or he may receive the social benefits of legitimisation and access to resources,'' Harris wrote in her paper, Oppression of the Bereaved: A Critical Analysis of Grief in Western Society.
''That same individual must then live with knowing that a certain degree of 'abnormality' is being identified with his or her experience. In contrast, bereavement researchers and clinicians generally believe that grief is an adaptive response to loss, and that grief is not a disease or illness.''