Decisions to be made about mum's future health care

Mum and I went out to the park again today with the wheelchair. The children were playing soccer on the field and I put mum next to the second bench, and I sat on it, and we watched the kids kick the ball around the place. Some of them were quite good. After about 15 minutes we went back inside due to the cold.

I had managed to get onto my brother in Houston on the iPad this time, and I told him about mum's frail condition, and how she was prey to infections, and could be back in hospital at any time. When we had finished talking I went down the hallway to the nurse's station to ask if they could dress mum's leg as I wanted to take her outside in the wheelchair. The nurse told me that they had seen that we were talking on the iPad and so had not disturbed us when they had called earlier to dress the leg in mum's room.

While the nurse was doing the dressing another nurse came by to talk about various things that had been my preoccupation for some weeks, namely the likelihood that the nursing home would one day soon call me again to ask if mum should be readmitted to the hospital. I had also been pressingly engaged with the request that I knew would come from hospital staff - because of the advance health directive (AHD) we have in place - as to whether mum should be treated with antibiotics to cure the infection when it came. This had happened last time. It would again be my decision to make.

The nurse told me that it might be possible to put in place an alternative AHD. She also suggested having a meeting with the deputy director of the nursing home and also the GP so that we are all on the same page regarding mum's health care, when it comes to making decisions in future about it. She said she could organise this meeting for next week and asked what day I would be available. I checked my calendar and said I was pretty much free the whole week.

The reason I think it is important to have this kind of meeting is to make sure that mum's wishes - as expressed in the AHD - and common sense are adequately allowed for. Take the way the hospital has been handling mum's case since her last admission. Not only did they call me to ask if antibiotics should be used - because the AHD says not to use them for terminal illness - but to ensure that there is a degree of common sense around her treatment. In this case I like to keep in mind that the hospital kept mum in the ward for a second round of IV antibiotics because she obviously needed them, but also because the only way they could be administered when she is in the nursing home is through a pick line: a tube inserted in the arm and into the body for the fluids to enter the body through. A pick line was clearly thought to be too invasive, and so they chose the less invasive option.

Even in the best cases there are invasive treatments involved in hospital admission, including for example the catheter that is inserted in the urethra when the patient is still unconscious in the emergency ward. Then there are the cannulas - which mum is always wont to take out of her hands because she forgets what they are for when they are not plugged into a bag of antibiotics. Cannulas are like small plastic devices that accept the IV feed and direct it into the vein, but they can easily be taken out of the vein by busy fingers. The number of cannulas mum needed this time is attested to in her case by the extent of the bruising on her hands and arms. (The poor woman has devised a fantasy - she was in the back of a car with horses - to explain how the bruises came about. "The horses smelled," she said. "You couldn't make that up," she told me, looking in my eyes, as though seeking agreement.)

Poor mum. She was sitting there while I was having these detailed discussions with the nursing staff about her life. On occasion she said, "I'll just go," as though this might make the decision any easier in future. I felt terribly touched when she said "I'll just go" because I know she is saying it to avoid burdening me with any more responsibility. Not that she really wants to die. (Not that she really wants all that terribly much to live either: we talked briefly about voluntary euthanasia and how it is dealt with by the state in Australia today.) But it is a terribly hard conversation to have - the conversation we had today - because when it comes down to it you are dealing with an infection that can only be treated by antibiotics available in IV form, and that only hospitals can dispense. In mum's case therefore you come down to admitting her again and again and again to hospital, and getting her out for a week or two at a time in between. What kind of a life can that be?