Victoria’s end-of-life choices inquiry and a tale of 3 deaths
John Paynter’s description of his wife’s death in Canberra Hospital palliative care was both graphic and courageous. It reminded me of my own first encounter with terminal sedation. The year was 1996, and an old patient of mine with advanced prostate cancer, not then in my care, had severe bone and nerve pain in conjunction with spread to the spine. His pain, and associated other symptoms such as urine retention, constipation, immobility, dependence and mental confusion, were considered by palliative care to be refractory symptoms – that is, unable to be relieved by normal treatment. They decided, instead, on what proved to be terminal sedation. Nutrition and hydration were withdrawn, morphine was progressively increased and sedative drugs were introduced. He died seven days later, and for the first five of those days the medical record revealed that he continued to be in distressing pain.
One might expect that palliative treatment had improved in the past 20 years, but John Paynter tells a very similar story of his wife, who died of stage 4 cervical cancer at Easter. The last words his wife spoke to John, as she entered the CT canal for yet another scan, were “I’m scared”. He never spoke in a meaningful way to her again. The scan showed irreversible brain damage. Palliative care was the treatment decision and food and fluids were withdrawn, together with antibiotics and any other life-sustaining drugs. From this point there was only one outcome and John understood that, even though the pathway was not clearly explained.
Although Mary Ann was clearly terminal from the time she entered hospital, no relevant discussion occurred until she was incapable of being involved. John and his family had no chance to say “goodbye”. Terminal sedation was introduced, but was so inefficient that Mary Ann remained in pain and distress for five days before lapsing into a deep coma. She died on day seven. John argued strongly for more relief but was met by the argument that doctors could “do no harm”. Communication from the doctors was so poor that John perceived the harm was from lack of fluids and antibiotics, whereas, in fact, it was from inadequate palliative medication to ensure that his wife did not die in severe pain and distress.
Recalling these final days, John wrote: “For the first few days she was constantly gurgling and coughing in an attempt to clear her throat. She appeared terrified… It was horrible to watch her with her face scrunched up in pain and trying to breathe… On day five, she was still groaning and trying to cough, sometimes almost screaming.” She died after seven days “of unnecessary and unbelievable cruelty”.
In response to John’s story, a nurse who cared for palliative patients on a daily basis, who did not wish to be identified for fear of retribution, wrote: “I have seen countless patients and families suffer unnecessarily due to lack of choice in end-of-life care. Not being able to give people choice feels to me like making suffering compulsory.”
Has nothing changed in 20 years? Graeme Lovell’s description, to the Victorian parliamentary inquiry into end-of-life choices, of his wife’s death from brain metastases in 2013, in Melbourne’s Alfred hospital, reveals a very similar story. Graeme describes Susan’s death over nine days of palliative care as “a terrible death”. Graeme stayed with his wife night and day, and had to fight to get morphine for her to prevent pain and suffering. He considers she died “a barbaric death”. He said, “I do not want to see other totally vulnerable people suffer and die in pain.”
These events are not commonly reported, but this does not mean they are uncommon – people are often too traumatised to speak. As a society, we shy away from death. Few want to remember the final moments of a person close to them, a person sometimes unrecognisable by the time they die.
John Paynter had no complaint of the nurses – in fact, he records that after a heated conversation between a sympathetic nurse and the head palliative care doctor, his wife’s sedative dose was trebled. So much for titration – too little too late, in my opinion, and John’s, too.
On almost the same day that I read John’s story, I received a personal letter from the partner of a man with motor neurone disease, whom I had counselled. He had the bulbar symptoms associated with the end stage of this disease – progressive difficulty in talking, swallowing and breathing. After meeting him and his partner, and carefully assessing his suffering, and his state of mind, I provided him with Nembutal. His partner’s letter described the effect of having control on his quality of life, and described how he died. I quote from this letter because the contrast between his death and that of Mary Ann Paynter could not be more stark.
George, a 60-year-old IT consultant, had had progressive symptoms for three years when his diagnosis was made. Every day he felt weaker, lacking energy as his lung function diminished. He slept more and required a wheelchair for mobility. George and I met after he had heard me talking on ABC Radio.
“This meeting gave him great relief,” his wife wrote in her letter to me. “He felt like he had control of his life again. He could choose when it was all too much. He wasn’t afraid of death; he was frightened of living with no quality of life.
“He decided from that moment on that he was going to have a party, invite everyone and say goodbye. He did and it was a wonderful celebration of his life, and he enjoyed every moment.”
Ten months after his diagnosis he was beginning to have difficulty swallowing, and his speech was failing. “Toward the end of March he asked his family to come and see him for the last time. He told them through strained breath that he thought he was going to die and that he loved them.”
With his wife by his side, “he took a drink he had by the side of the bed. He smiled at his wife, and asked that the others come into the bedroom. He smiled at the room full of his loved ones and closed his eyes. He went to sleep and didn’t wake up.”
The drink George took contained Nembutal. This is a quick-acting barbiturate sedative which, when taken by mouth in the correct dose, causes a gradual and peaceful sleep in about three minutes. The sleep deepens until death occurs. This takes about 15 minutes. “The family stayed all night, and off and on went and sat with him. Talking, singing and crying,” George’s wife wrote. “The funeral was a fitting tribute to a man who had a full life, and died with dignity in the loving embrace of his family.”
I am a strong supporter of palliative care but I am also a critic of its practice of terminal sedation for refractory suffering. Why, when someone, such as the partners of John Paynter and Graeme Lovell, have refractory suffering must the relief of that suffering take days, and sometimes longer, to be effective. It cannot be for legal reasons because it is accepted in medical practice and common law, that a doctor who hastens death, whose intent is to relieve suffering, is not guilty of a crime. Palliative care seems to ignore the self-evident truth that some suffering will only end with death, and that there are occasions when the humane and compassionate thing for a doctor to do is to hasten death, preferably with the consent of his or her patient. Unfortunately, palliative care’s mantra is to “neither prolong life nor hasten death”, which creates a conflict between relieving suffering and not hastening death. Unfortunately, the latter seems to win out, to the disadvantage of many patients and their families.
The Victorian standing committee inquiry into end-of-life choices recommended that the government legislate for assisted dying. It clearly indicated a process where a person with only weeks or months to live, who had unbearable and enduring suffering, could be prescribed medication by their doctor that they must self-administer – just like George. If passed, such a law would allow more people to die at home with their concept of dignity and serenity, if they so choose. It might even result in a change to palliative care practice that is more in line with community expectations.
This article was first published in the print edition of The Saturday Paper on Jun 25, 2016 as "A tale of three deaths". Subscribe here.