The right to die at home
I was driving my father-in-law to hospital for his dialysis treatment when he stepped out of the car and began to make his way home on foot. He had had enough of hospitals. “No more,” he yelled as he weaved through moving cars. I followed him and managed to talk him back into the car after promising him that the family would do all they could to minimise his hospital visits.
Within about a year he was offered home dialysis treatment, which he took. This allowed him to manage his illness in a way that suited him and his family. The opportunity to exercise choice and control in his home dignified him.
But why do we allow and indeed encourage the unwell to manage their health at home, yet draw the line on home assistance when it comes to managing death? Why does patient autonomy end with end-of-life choices? Why, when 70 per cent of people over the age of 15 say they would prefer to die at home, do only 14 per cent see through this wish?
We are repeatedly told by sections of the medical profession and religious groups that death should dictate the way we leave. According to the palliative care specialists and religious representatives who appeared at the Victorian parliamentary inquiry into end-of-life choices, we should permit death to linger in the shadows of a hospice ward or an aged-care facility until it decides when it’s time to go. Death may need a prod with the aid of “deep continual sedation”, but ultimately death dictates our departure.
A consistent position taken by palliative care experts who appeared before the subcommittee was that continuous deep sedation ought to be the final tool in the medical bag, and that death through “maximum relief” delivered by a doctor at a time of the patient’s choosing should never be an option. As the director of palliative medicine at Cabrini Health, Dr Natasha Michael, stated: “The risk is too high, and you have to think of the risk to broader society.”
But as the vice-president of Dying With Dignity Victoria, Dr Rodney Syme, explained to the subcommittee, a palliative approach that involves the slow and incremental delivery of analgesics and sedatives through a syringe driver without the provision of hydration may be acceptable for some patients, but not for all. Continuous sedation may be ethically appropriate for a large section of the palliative care community, but not for other sections of the medical community.
The prime point of difference between the palliative care community – including their religious supporters – and advocates for physician-assisted dying and active voluntary euthanasia is that the latter group maintains the patient, not the doctor in charge of the patient’s palliation, should decide when and how to go.
Just before his 60th birthday, my father-in-law was diagnosed with a brain tumour. And just as he was able to manage his chronic illness at home, he wanted to manage his death in the privacy and safety of his home. He was not actively seeking death or planning to outpace it; he just wanted to oversee it on his own terms.
He particularly did not want to be surrounded by smock-clad hospital staff and life-sustaining machinery. He did not want nurses administering intravenous lines and arranging tubes that deliver chemicals that kill pain and prolong a life he no longer wanted to live.
He did not want the last sounds to be the distant hum of a floor polisher, or a meal trolley, or an elevator bell announcing the arrival of a postoperative roommate. He wanted his last words to be heard by those who meant everything to him, not the night nurse stationed at the end of the corridor.
Sadly, one late night at home his wife panicked and called for an ambulance after he became disoriented and confused. In spite of his semiconscious protestations, he was transported to hospital, where he stayed for a few days before being moved to a palliative care facility.
I remember the softly spoken hospice nurse telling me, “We will all face this moment in our life.” To which I asked, “Yes, but why here? Why can’t life end in the place that means everything to this dying person?”
My last image of my father-in-law was of him struggling to lift his deadened body out of his hospice bed. He wasn’t trying to escape death. He just wanted to go home to finish his life with his wife and daughters by his bedside. His home was not far away, yet he was unable to die there.
I don’t know if he would have requested an accelerated or immediate end to his life. I do not know whether he would have ingested Nembutal if he’d had access to it. I do, however, know that as a fiercely independent person who did not like others telling him how to live his life he would have had in mind a firm plan tailored to his needs. His death would have been far more dignified if he was afforded the opportunity to enact this plan in the place where he was most at ease, safe and free.
My father-in-law died at the Austin Hospital more than a decade ago, about the time when the hospital launched its highly laudable Respecting Patient Choices program. The person responsible for the program, Associate Professor William Silvester, wrote an article for The Age in 2011 about a patient who no longer wanted to go back to hospital. He called him Robert.
Like my father-in-law, Robert did not want to endure the indignity of breathing tubes or unnecessary life-sustaining intervention. The medical staff, his GP, and his wife understood this, and ensured that his wish to die on his own terms in the comfort of his home was respected.
As Silvester wrote, “When Robert did become acutely breathless at home, he asked his wife to call the GP not the ambulance, as he would have done previously. His GP visited him at home, provided comfort care and Robert died with his family at his bedside. That’s what I call a good death.”
Yes, a good death. But the doctor does not tell us what this “good death” looked like. Did Robert have possession of life-ending drugs? How were these drugs accessed? How were they administered? Who administered them? Was Robert placed under deep and terminal sedation or did he ingest death-enabling medication? Were his friends and loved ones present? How did they provide comfort, care, and assistance?
Fortunately, these questions were openly addressed in the Victoria inquiry, which ended last week, and hopefully the frank and open responses provided by those who deal with the dying can guide our legislators in a manner that will bring about reform to a law that is unclear on how the terminally ill can die a good death.
During the four-month public hearing, Peter and Patricia Shaw were found dead in their Brighton home. The couple, both 87, ended their lives on their own terms at home in October because, as Mr Shaw wrote in a letter to The Age in 2007, they wanted to avoid “do-gooders placing obstacles in our way”. But Patricia and Peter’s self-managed exit should not be confined to just the few who have the means, know-how and luck to do so. It should be available to all Australians.
As journalist and broadcaster Andrew Denton noted in his testimony to the subcommittee, two Australians over the age of 80 die from suicide every week, with the common means of death being hanging. This was reiterated by Oxford University’s Uehiro chair in practical ethics, Professor Julian Savulescu, who identified suicide as the most common cause of death, adding “a large proportion of these suicides are, increasingly, elderly people who attempt to take their own life, often in horrific circumstances, such as with a broken glass through their neck when faced with going to a nursing home”.
We can do much more to help people, and especially the elderly, die well in the place that means everything to them. And as identified in a study, “Dying Well”, conducted by Swerissen and Duckett for the Grattan Institute in 2014, doubling the number of people who die at home can help achieve this. According to the research, it will cost $237 million a year, but about the same amount of institutional care funds could be released to pay for it.
Most people who return home to die will seek palliation and express the wish to live their life to its “natural end”. But the shift from hospice to home care must ensure that the wishes of those who do not want palliation are equally respected.
We do not need to wait until a loved one has passed away in a hospital, a hospice or an aged-care facility, usually after experiencing unwanted suffering and long terminal sedation, to declare that “they are at a better place now”.
This place should be where one starts. Home.
This article was first published in the print edition of The Saturday Paper on Dec 5, 2015 as "There’s no place like home". Subscribe here.