"Need for better communication when a family member is dying."

A year or so ago my elderly father was admitted to the Gippsland Base Hospital with severe cellulitis. I made the trip from interstate to visit him in hospital and to assist my elderly mum who can only get around using a 'wheely-walker' or wheelchair.

When I saw Dad in the hospital his breathing was laboured and bubbly. His leg infection was very red, swollen and so painful that he could not bear to have the sheets resting on it. He constantly pushed the sheet off and lay uncovered on the bed. He was, mercifully asleep much of the time.

When I brought Mum in to visit Dad she asked if the nurse could organise a frame or leg cradle to go over Dad's legs so that he would not be so cold and uncovered or have to bear the pain from the sheet touching his leg. The nurse arranged some pillows to raise the sheet but the next day the pillows were gone and Dad was uncovered again. GBH is a large hospital - surely a frame could have been found and a note put into Dad's record to allow for this small alleviation of his pain and discomfort and to protect his dignity? 

Over the next couple of days I brought Mum in a wheelchair to visit Dad. No one was telling my mother or I anything about Dad’s condition so I made sure that my next visit coincided with hospital rounds so I could find a Doctor who could talk to me about what was happening to Dad.

I arrived at the hospital to find about 8 people standing around my sleeping father's bed. I was vaguely familiar with one of the support staff who had coordinated my Dad's previous care but everyone else was a stranger to me. I was identified as my father's daughter and asked to join the group. A doctor introduced himself and told me that Dad's infection and fluid build-up was severe and putting great strain on his heart and other organs. He was not responding to the treatment, but as a last resort, they could take him to ICU for medication that would speed his heart up and possibly help to reduce the fluid build-up.

Standing by my father’s bedside, on my own and surrounded by strangers, as I was being informed, in a round-about way, that my father was dying and asked to decide on-the-spot whether to authorise intensive treatment or to let him die – to let nature take it’s course.

I remained as calm as possible and said that our family's highest priority was that Dad be kept as comfortable as possible and that he was a very private man who would find the conditions in the ICU very stressful. My decision was accepted, I was given tacit approval and that was that... They moved on.

I walked away and with no other support than a sympathetic look from a nurse, I tried to compose myself. A short while later I saw the support staff person walking away down a corridor. I waved to them and they very briefly returned to speak to me, telling me I had done well in there and that my father would be put into a private room and that my mother and I could visit at any time, day or night. (From this I gathered that they definitely thought Dad was going to die. ) This person then hurried off. Apart from the nursing staff, who came and went without being able to tell us anything, that was the only contact either my mother or I had with any of the hospital medical staff.

A day and a half later Dad passed away, alone, during the night & just before my siblings arrived from interstate. I was not there either, having taken my mum home and neither of us being aware that this was to be Dad's last night. The two nurses on night duty were kind and thoughtful in their preparations for me to see Dad's body late that night.

During this whole process no one was deliberately unkind - what still distresses us as a family is that we were utterly left on our own, amidst all the hospital busy-ness, to try to understand and manage the dying of our much loved dad and husband.

Even now my Mum is still haunted by the fact that nothing was done to help Dad with the pain from the sheets on his inflamed leg or to help with his heavily laboured breathing. She feels bad that she didn't think to make more of a fuss and try to know what questions to ask or services to insist on (even though she was in the process of loosing her husband of almost 60 years).

After I picked up Dad's belongings from the hospital I found that the hospital staff person who had packed up my Dad's things had not bothered to put my Dad's heavily soiled pyjama top into a plastic bag before putting it into his overnight bag. I guess the hospital staff were too busy...

Too busy to put his soiled pyjama top into a plastic bag first.

Too busy to ask to speak to or even ring my Mum to let her know that her husband was dying.

Too busy to ask me to sit down somewhere private before asking me to decide whether to treat or let my father die.

Too busy to sit down with my Mum and I to explain how it goes when someone is dying.

Too busy to get a frame that will keep the sheets of Dad's leg or to make a note about this.

Too busy to ask if we are OK of if we have any questions.

Too busy to offer any palliative care, services or support.

One of the nurses on the ward said to me later when I went back for Dad's things: 'It's harder for family because, while we see this a few times a week, it's all new to you. ’

Death is not 'business as usual' for family members.

We need hospital staff to communicate, to take the initiative to offer some guidance, services or resources to help family through the process. To take the time to personally talk with us and tell us that our loved one is dying.

As a family that was grieving we could not be brilliant at knowing what to ask or how to be appropriately assertive. Our family was given no other support than the very basic care for my father as he died. The ongoing painful memories and regrets we have around the events of Dad’s death at the Gippsland Base Hospital could have been make so much more bearable had much better systemic communication and support protocols been activated in behalf of my Dad and his family once there were no further treatment options.