Bringing death to life

We need to acknowledge death and dying and include quality of life in end-of-life care, says Joanne Lewis.
We need to acknowledge death and dying and include quality of life in end-of-life care, says Joanne Lewis.

Modern medicine has given western society what palliative care nurse Joanne Lewis calls a “death denying culture where death is seen as a failure.”

Joanne, a lecturer in palliative care, primary health care, aged care and ethics at the University of Technology Sydney, spoke at the 2013 NSWNMA Professional Day.

She says health professionals and junior medical staff members are eager to learn ways to communicate better with patients at the end of their lives, but much more is needed in terms of public policy.

“Palliative care in Australia needs more community home care, more education, particularly around communication in end-of-life discussions, and more support for aged care facilities for end-of-life care,” Joanne said. “There’s a failure to recognise that often prolongation of life may fail to support an acceptable level of quality of life and we often don’t even begin to discuss that in our health systems.

“The challenge is to acknowledge death and dying and include quality of life in treatment management and care.

“Often we give the task of end-of-life decision discussions to the most junior doctors to do. Whenever I’ve done rounds with the palliative care team I’ve made a big effort to grab a couple of junior doctors and say ‘do you want to hear a good end-of-life care discussion, a good goals-of-care discussion?’ And they come along gladly; they really want to know how to do this well.”

Her students are also eager to learn how to provide better end-of-life care:

“They feel unprepared to do it, they feel the system doesn’t sustain good end of life care and they want to communicate better.”

Joanne told delegates at the professional day that in the UK, many Gen Xers and Gen Ys seek conversations and information about death and dying at Death Cafes (, where participants are invited to “drink tea, eat cake and discuss death”.

“Many of them have had an experience of a death at quite a young age and there’s no avenue in their social network to have these conversations,” Joanne said.

In Australia, Advanced Care Directives (ACDs) are an important aspect of end-of-life planning but more is needed.

Between 19 to 29% of aged care facility residents die in hospital, despite having ACDs. And overwhelmingly the discussions of care that take place for this group are reactive to their sudden deterioration, taken without the time to consider the issues and certainly too late for many of the planning aspects to be effective.

“Improved quality of end-of-life care requires moving from a single focus, such as ACDs, to public policy on multi-faceted interventions,” Joanne said. “This is a complex social systems problem and it requires a range of interventions.”

Until early in the 20th century, death and dying commonly occurred at home, surrounded by friends and relatives.

“There has been a change in the place of death, it occurs in institutions overwhelmingly. Certainly that shapes how we perceive the naturalness of death.”

Joanne remembers a patient, a young woman dying of an advanced bone cancer, who told her she had suffered a social death long before her dying days.

“She told me ‘I watched my friends withdraw, fearful. They weren’t sure what I had done to bring this on myself. They were uncomfortable with death and dying so they were uncomfortable with me’.”

When discussions about end of life decisions do occur, communication is confused and the medical language is even more confusing.

“Numbers of times I’ve walked back in a room to talk to a patient and family about what they understood and they have said they had no idea what was said.”

She says even a simple change in language can be effective. A study this year looked at responses to the terms Do Not Resuscitate (DNR) and Allow Natural Death (AND). The focus on using CPR fell from 60 to 49% with AND.

“DNR implies you’re taking something from somebody. But is it right to offer it in the first place if it is unethical and causes harm? Use the D word and people are very clear what you’re talking about. So we need to consider the language we use.”

Joanne has been a nurse for 24 years, 15 of them in palliative care.

“What I’ve learned in caring for the dying is that death overall is peaceful, acceptable and dignified; that we cannot guarantee a good death, but where we do it well we can guarantee good end-of-life care.”

Joanne recommends the book Dying to Know: Bringing Death to Life published by Igniting Change (formerly Pilot Light Australia)

“Read it and rush into the daylight to get on with the more challenging work of living,” Joanne told delegates. “People study for weeks for a birth. Why not study for death?”