Dear Mike and Kelly,
I wanted to let you know how valuable having an Advance Health Directive has been for my husband Chris and I.
In early 2013, Chris began experiencing excruciating pain in his right ear. After several months and many doctors this was eventually diagnosed as otic variant glossopharyngeal neuralgia. In other words, a blood vessel had wrapped itself around his 9th cranial nerve and was compressing it, causing the overwhelming pain.
Chris eventually ended up with nine specialist doctors, five allied health personnel and community care support. He was hospitalized nearly 50 times in a four year period and that included three craniotomy operations. He needed the strongest narcotic pain relief available and adjunct pain management strategies such as electronic nerve stimulators implanted in his brain. Despite all of this he still had pain and developed a range of additional health problems as a result of the narcotics.
The third craniotomy Chris had was to surgically cut through his ninth cranial nerve so it could not deliver pain messages to his brain. This worked, but unfortunately Chris lost the ability to swallow in the process and had his tenth cranial nerve permanently damaged. He swapped one version of living hell for another. A week after his surgery Chris suffered a respiratory arrest, was returned to ICU and placed on a ventilator. It transpired that his ability to swallow had been overestimated and the fluids he had been given to drink had gone into his lungs, not his stomach. He was given an emergency bronchial lavage (airway washout) but the damage was done. He left hospital without his original nerve pain but with new nerve pain, a very limited ability to swallow, permanent damage to his lungs and extensive damage to his brain and body from the lack of oxygen that occurred during the respiratory arrest. Both the quality and quantity of his life had been dramatically reduced. I had to leave work to become his full time carer.
Only two of Chris’s doctors, and not the primary ones, mentioned the chance that his life span might be shortened. Chris had also noticed that when being admitted to hospital, he was being asked if he had documentation such as an advance health directive. He decided he wanted to pursue this further and was strongly encouraged to do this by our daughter. You helped him to create an Advanced Health Directive that included him expressing his wish not to receive life sustaining treatment in the future.
Chris discovered that producing the AHD on admission to hospital usually created an opportunity to talk further about his challenges and how he wanted to deal with them. He then felt more relaxed that his wishes were being heard and respected. It also prompted many conversations between the two of us about how and when his death might occur and how I would deal with it. Again, this allowed Chris to express his wishes and be reassured they had been heard and would be respected to the best of my ability.
Chris had become terrified of being admitted to hospital and refused to go on many occasions. His GP explained to him that this may lead to his death and Chris responded that he wasn’t worried about that. He wanted to die at home, with me at his side and if that was sooner rather than later, that was fine by him. The GP explained that it would be important to regularly review his wishes at subsequent GP visits. This was something we had not realized was required. Chris and his GP went on to have several conversations about his status and ongoing wishes.
Finally, five months ago, I woke to discover Chris was unconscious and not breathing. Despite all our planning and preparation, I was in shock and very worried. I knew his AHD would be respected in a hospital but I didn’t know what would happen if he died at home. I was the sole beneficiary of his will and thought someone in authority might question me not providing CPR. I hadn’t worked out who to ask about this and it was now too late to find out. I phoned the ambulance service who predictably talked me through CPR and the use of our home defibrillator. The defibrillator advised that no shock was advised and this reassured me that Chris’s heart had stopped. Just as the ambulance crew arrived I explained to the call centre operator on the phone that Chris had not wanted CPR and had an AHD. She told me to show it to the ambulance crew.
While they began working on Chris, I went to retrieve the AHD from his home medical file and then showed it to the crew. They immediately stopped active resuscitation treatment, made Chris comfortable and let him rest in peace. One of the ambulance crew then phoned the GP who confirmed he had discussed the AHD contents with Chris and I and was happy to write the death certificate. This meant that a coroner was not required and Chris could stay at home until the undertakers arrived. I was able to talk to him while providing the final acts of caring for him such as washing his face and kissing him goodbye in a calm, quiet and most importantly, home environment.
My only regret was that I didn’t tell the call centre operator for the ambulance service about the AHD when I first called them. I think then that I might not have been instructed to commence CPR. I did apologize to Chris for doing it at the time but knew he would understand.
Although I always believed AHDs were important, I hadn’t realized just how much until faced with the experiences of using one. I will therefore be completing mine very shortly.
15 January 2019