You are invited to read further about another case where an Advance Care Directive would have saved the person from much suffering:
The following is another heartfelt story of an intelligent, elegant woman, much adored wife and mother, who has been kept alive with modern medicine and excellent nursing for 17 years. Her name is Barbara.
Barbara’s children came to NurseLink after hearing about Peggy Cundell’s story and the brave protests at the system made by Peggy’s daughters. It is interesting to note that Barbara’s accident occurred in 1995 the year when South Australia’s Consent to Medical Treatment and Palliative Care Act was passed. This Act was seen at the time to provide leadership in the area of palliative care not only for Australia but also worldwide.
The accident, told by her children
In April 1995, Barbara, a pedestrian, was hit by a van as she crossed Gouger St to the market in the morning.
She was rushed to hospital by ambulance. The family gathered at the hospital and waited all day as the doctors worked on her. Her brain swelled due to head trauma. She was in a coma in the Intensive Care Unit of the Royal Adelaide Hospital. It was a long and traumatic day for everyone.
That night the doctor in charge of Barbara’s care at the RAH advised that her injuries were life threatening and that it was most unlikely she would ever fully recover. She would be disabled due to the brain damage. He could not or would not predict any outcome. Never did he discuss the option of allowing nature take its course or ask what Barbara would have wanted to be done if she had been in a position to express her wishes. Her children and husband (a doctor) were in shock and floundering with a range of emotions at the time.
3 days later the doctors operated to remove part of her brain to accommodate the significant swelling which they had been otherwise unable to resolve. This was not successful and they almost immediately operated again to remove another section of her brain. The doctor told the family that while he had saved her life he was pessimistic about any potential quality of that life. Approximately 10 days later, another doctor at ICU advised one of the family that they were going to disconnect Barbara’s life support. The family felt some relief that this decision had been made as they felt that any road to recovery would be too difficult for a 70 year old woman. The family are unclear precisely what happened but she remained alive.
At a later stage she was moved to the neurological area at the RAH. She was still in a coma. At this time her husband and daughter asked the doctor in charge if this whole trauma could be ended for Barbara by allowing her to die with dignity. By now the family were able to think more rationally and had become totally aware of the gravity of the brain damage and the long term ramifications. The doctor was adamant he was not in a position to be able to help.
The then new Consent to Medical Treatment and Palliative Care Act states that:
‘Medical Practitioners (and those administering treatment under a medical practitioner’s supervision) are not obliged to use life-sustaining measures if the treatment would merely prolong life in a moribund state with no real chance of recovery, or in a persistent vegetative state.’
Months later, still semi-conscious, she was taken to the Julia Farr Centre to undertake intensive occupational therapy and physiotherapy. There were no real improvements; however she did regain consciousness although not in a cognisant state.
Finally, after some months the family were advised no more could be done. She was moved to the nursing home area within Julia Farr Centre where there was little care given or dignity preserved. There she suffered until a nursing home bed could be found for her.
The nurse at NurseLink asked Barbara’s three children to reflect on what their mother’s expressed wishes were about end of life values and beliefs. This is what they said based on their family’s previous experience with a number of elderly relatives.
Throughout these times she pleaded with her children. . . ‘whatever you do, darling, don’t ever let this happen to me—shoot me!’ A lingering death really, really, bothered her. She absolutely believed nature should take its course and people should not be kept alive in a moribund or vegetative state with no chance of recovery.
When her first husband, father of the children, died suddenly at 51 she was adamant and consoled all three children (aged 24, 21 and 20) with the relief that he had died and had not gone on living in a vegetative state or for that matter that his active lifestyle would be severely impaired. She always stated that she preferred this option also for herself. In reality her desires have not been respected over the last 17 years.
Barbara, when she was able, would time and time again tell her children; ‘there are fates worse than death’ !!
Barbara was mother and best friend to her three children. The emotional suffering for them has been relentless. The person she was has gone but everyone’s grief has had to be put on hold. She has never recognised or communicated with any of them since the accident.
Barbara, the person
Barbara had good Christian values. She was a highly ethical and compassionate person. She took her responsibility as a mother as her most important role in life. She created a loving family environment. This later extended with her grandchildren and more latterly her step daughter and step grandchildren. She embraced all family members and continually bent over backwards for each and every one of them, through good times and bad. She was an outstanding mentor to all.
She believed in being active in the community and keeping aware of what is happening in the world. She retained a good level of fitness and played tennis and golf right up until her accident. She worked at the Citizens Advice Bureau voluntarily for many years. She was a qualified physiotherapist. She played excellent bridge. She helped at the Church with flower arranging, convened school fetes and so forth. She and David, (her late 2nd husband) entertained frequently, travelled frequently and embraced life to the full. (e.g. on her 70th birthday she and a few friends took Harley Davidson rides to celebrate!)
After her time in Julia Farr, Barbara was moved to the Helping Hand Aged Care where for the past 16 plus years she continues to languish. It is difficult to determine any conscious quality of life. Her physical condition decreases on a day by day basis. Up until 3 years ago she was sometimes moved from her bed into a purpose built wheelchair using a pneumatic lifter. This no longer happens and she remains in bed apparently not conscious. She makes no voluntary movement and there are no facial expressions except involuntary wincing which could indicate pain.
More memories of suffering
In about 1999 she was restrained, as usual in her purpose built wheelchair and had a seizure (These had begun not long after admittance to the nursing home) and her hip was broken and subsequently operated on by an orthopaedic surgeon. She remains on drugs to prevent seizures.
In approximately 2010, due to 5 abscesses in her mouth (her teeth by this stage were rotting) a dentist recommended all 25 teeth be removed which was subsequently done. It is plainly obvious that her life is intolerable and, given her strongly expressed desires, it is totally inhumane to continue to sustain this life.
Joy Nugent shares her own Advanced Care Directive