My beautiful husband Michael was just 37 years old when he was diagnosed with stage 4 pancreatic cancer. I remember the shock we both felt when we were told that there was nothing that the medical profession could do for him and that our only option was a referral to palliative care. What! palliative care? Isn’t that for people who are dying? We could not believe that this was our only option and initially Michael refused to make the call.
I contacted palliative care within two weeks of his diagnosis, simply because I didn’t know what else to do, and told the staff that Michael was reluctant to engage. When I explained this to them I got the feeling that they felt the same way. They told me that when he wanted to see them they would come to our home and see us both together.
I understood at the time that Michael wasn’t ready to give up and he felt that if he accepted their support he would need to acknowledge that he wasn’t going to make it. I struggled however to make sense of their lack of support of us. Wasn’t that their job? We withdrew into our own private world and tried to fight this horrible disease. We did not hear from palliative care again until seven months later when we were both exhausted from the fight and realised that we had no option but seek their support. I see now that their lack of support was because they were so over worked that they felt it was better to support other families who wanted their help.
I remember the day that Michael gave in and told me to call the outreach palliative care team. He was struggling with the very painful symptoms of his advanced cancer, he couldn’t sleep or eat and I had recently made the decision that it was time for me to leave my job and become his full time carer.
Initially we received a couple of home visits from the nursing staff, however these were brief and did not alleviate his physical suffering in the way that I had hoped. Michael was still not really engaging but I felt that at least there was someone I could call if I needed help or advice. I soldiered on as only one who is fighting for the love of their life could, but the battle felt very lonely. As Michael deteriorated I realised quite quickly that the level of support that we would need to keep him at home was just not available, and I wondered if I would be able to see this through to the end. I did of course, but the journey was one that I believe could have been very different.
I want to say from the outset that what I have written here is in no means a reflection of the staff who work in the system, but a problem with the system itself. I can see now that funding is where the real problem lies, and I hope that my speaking out now, some five years after Michael’s passing, will in some way help other families who are living the same nightmare that we were.
At the time we were surviving day to day and I was so caught up in trying to be everything for him, and to be there for our children that I was not in a position to take on an underfunded system. And really, nor should I have had to.
I was exhausted, confused and completely out of my depth. I was not a nurse, I had never done personal care before. I did what I could, but it would have been helpful to have had staff come not just to check on Michael’s pain management, but to show me how to perform his personal care needs in a way that did not cause him more pain and helped to retain his dignity. They were always in a hurry, needing to rush out the door on their way to see another patient.
It is the same story in end of life care as it is in rest of the health system, too many patients and not enough time; this is the crux of the problem. How can one nurse possibly spend the time that is needed with each family to address the myriad of issues that arise when someone is dying? What if that one nurse needs to see ten patients and their families in one day? How do they allocate their time in such a way that everyone’s needs are met? People who are dying and their carers need not just practical support but emotional support as well. It is unrealistic to think that a 30 minute home visit once a week will address all these issues.
Our experience got tougher over the last three months of Michael’s life, and the system’s failure to provide support created more angst and more pain for a family who really were suffering. I could easily give examples of situations that arose where the support that we needed was not available. I am happy to relay those examples to anyone who is prepared to listen. Once again it is not the staff, but the lack thereof that needs to be addressed. People who are dying, and their carers, need a whole range of services to ensure that they have some quality of life.
As Michael’s primary carer I was a nurse, occupational therapist, physiotherapist and social worker. In reality, I was really just a wife who was witnessing the very painful and slow demise of the man that she had thought she would spend the rest of her life with. We needed so much more than we received, and it has taken me five years to gain some semblance of perspective on this.
During the time that Michael was dying, I was grieving the loss of my husband and trying to survive myself. I didn’t have the mental or physical strength to advocate for him as much as I should have. But now I do.
I hope that someone will read this and acknowledge that dying is a serious business, one that impacts not just on the patient but on the whole family. I hope people who read this understand my intention is to not take away from the wonderful staff who work hard everyday to deliver a service that is compassionate and practical and do the best they can in what can only be an extremely stressful profession. They are as let down by this systemic issue as much as the families are.
Michael’s story came to us through Palliative Care Australia, the peak national organisation representing the interests and aspirations of all who share the ideal of quality care at the end of life for all. For more information about Palliative Care Australia please visit their website at www.palliativecare.org.au