not all broken legs are the same

My mother’s death

I cared for my mother at home from when she was showing clear signs of dementia in 2010 until she died, in 2020.

My mother’s death was precipitated by a fall which broke her thigh, requiring a plate to hold the bone together that extended from her knee to her hip. She was transferred to Calvary Hospital in Wakefield St for surgery, and admitted to Calvary’s orthopaedic ward to recover. She was 96 years old, had advanced dementia, and I was requesting that she receive palliative care. Nevertheless, the physiotherapist visited my mother in the morning following the surgery, while I was downstairs getting a coffee. When I returned to the ward my mother was sitting in a chair, cold and in agony. The nurses found a lifter to assist her back into bed. This was the beginning of two weeks of torture, where every two hours, when she needed to be turned to prevent bed sores, she would beg the nurses to stop, often screaming and clawing at them in agony. The doctor did prescribe stronger pain relief, but it was never enough. I was in the hospital all day every day to make sure that she was given the prescribed medication before she was moved. I believe that the staff attributed her behaviour when they were moving her, to dementia rather than intolerable pain. The prescribing viewpoint was that she would soon be discharged, so her pain medication had to be taken orally rather than using injections. The hospital refused to refer her for a palliative care assessment.

After her first week on the orthopaedic ward, Palliative Care SA gave me a name and phone number so I could directly contact Calvary’s Palliative Care Service. Their nurse came to assess my mother, and even though he thought she would benefit from palliative care, she did not fit the criteria for admission to the hospice. I rung him again a week later, when, in addition to the unbearable pain my mother was still suffering every two hours when she was turned, she was in agony from a bowel obstruction. I was told that Mary Potter Hospice would admit her if the treating doctor agreed to the transfer, which he readily did, and an ambulance was immediately dispatched.

By this stage both my mother and I were traumatised by her suffering. The transfer to Mary Potter felt like entering another universe. Immediately her pain was taken seriously, and I was welcomed into the space as part of the patient unit. The other valuable difference was that the nurses assigned to my mother’s care were reallocated to her when they came on shift again, so we had a care team who were building relationships with us. This gentle, respectful care extended right through until my mother’s body was taken to the mortuary five days later.

Some Learning

When my mother was diagnosed with Alzheimer’s type dementia in 2011, I contacted the Alzheimer’s Association (now Dementia Australia), and they invited my husband, my mother and myself to participate in a six-week ‘introduction to dementia’ course. I still feel grateful for this very helpful orientation to the journey we found ourselves on, not least because it put us into a group with other people in a similar position. This could be a useful model for people who receive a life-limiting diagnosis and their families, perhaps provided by Palliative Services.

One of the issues that leads to poorer outcomes seems to be that the moment when someone is deemed to be palliative is too late. I still do not understand why it took two weeks for a 96-year-old woman, with advanced dementia and a major injury to be transferred to the hospice. Even if my mother had recovered and returned home from the hospice, that would not have indicated a system failure, rather, an unexpected outcome. The fact that she died when she did was not a tragedy. She was near the end of her natural term, having lived a long and good life, the final ten years with a life-limiting condition. Forcing her to suffer because the standard approach when someone breaks their leg is to get them on their feet and discharged as soon as possible, was both a tragedy and a failure of the system.