Heavenly Beverley : Let's Talk About Death

I do wonder what kind of reaction I will receive from posting about this topic. Death. There - I spoke the word. Out loud. Will I cause revulsion, indignation, outrage, disgust, fear or sadness? Will I be viewed by five or fifty or five hundred people? In my opinion, we need to think and talk about death. Somebody famous once quipped that none of us is getting out of here alive.

Believe it or not, there is a method in my madness. I had a very interesting phone conversation this morning with Natalia Marais, who is the Customer Quality Coordinator at SJGMPH. I was quite surprised she had rung me, given my obvious displeasure clearly stated in my response to the letter from the CEO, Glen Power. If I was her, I would have thought twice about ringing this rather outspoken Beverley Hillbilly. So, gold star for courage to Natalia.

We drew relatively friendly swords about various issues. I wasted no time in letting her know that the difference between "between a specialist palliative care service and provision of end-of-life or palliative care" was just semantic twaddle. What had happened to just good care, regardless of the setting?

I also discovered, today, nearly two months after Lucky's death, that the reason he could not be transferred to the Private Hospital from ICU was due to a procedural flapdoodle. Lucky was meant to have stated, within twenty-four hours of entering ICU, that he wanted to be treated as a Private patient. Otherwise, he was doomed to stay in the Public hospital. Now that was information that would have been handy to know. Alas, we were meant to be mind readers.

Then, there was the harrowing nature of terminal restlessness. The first notion I had of this term, with its associated horror, was provided by Lesley Brown, a nursing superstar friend of mine, with about three hundred years of experience in the hospital system. After Lucky had died. And considering that between 25% and 85% of terminal patients will suffer from this horrible agitation (Glen Power's statistics), this lack of information was a terrible oversight.

We had no idea what was happening to Lucky in those horrible hours before his death, let alone that this condition was common and had a name.

The lack of available nursing staff was another bugbear. Michael and I were left on our own to care for Lucky as best we could. To quote Glen Power, "The caregiver did acknowledge that, on occasions, she did not enter the room and made her observations from the window of your father in law's room." How can a nurse adequately make observations on a dying patient from a darkened hallway through a window into a dimly lit room? And what about checking on us?

1B appeared to be understaffed. In a rehabilitation ward, I expect the workload would be quite onerous. One of the night shift nurses complained that she had eight patients to look after and the other nurse had seven patients. Lucky did not seem to be on her radar as an actual patient. And yet, there we were.

Then, there was the kerfuffle I raised about Lucky needing a subcutaneous line inserted for medications. To be told that episode only caused minor fleeting discomfort was not well thought through by Dr Power. I hope he doesn't use that line again.

Back to my conversation with Natalia. She and I looked for consensus. She asked me to consider meeting with her and other representatives from the hospital. After initially thinking "over my dead body (!)", I have reconsidered her proposal.

What if some good can come from Lucky's death; from all those other deaths that have sparked despair and hopelessness in the stories I have received over the last couple of months.

Ladies and gentlemen, it is time for consultation and (Ye Gods) even change. For the better. How we treat those dying, regardless of the location? How to ensure a smooth handover of patients from ICU to another ward or home or to a hospice? How to support the families of the dying? How can we share information to make the whole scenario less scary for all concerned? Stop this "secret society" attitude - such as the ridiculous time limits set to request being treated as a private patient? How can we discover the answers if we don't know the questions? Enable us all to ask any questions and have reasonable answers. And stop using bloody acronyms.

Thirty years ago, my baby Christopher died on the Neonates ward at Princess Margaret Hospital. In my arms, surrounded by staff. My then husband and I were allowed free access to him over the next few days. We were even asked if we wanted to take him home. He was transferred to the morgue after his death. He had an autopsy. Then I nearly caused a major international incident by requesting I bath and dress him on the day of his funeral. The morgue staff just about had apoplexy. Fortunately, I was being supported by a social worker named Kaye (I'm sorry I don't remember your surname. You were like gold). She liaised between the morgue and me. She asked what was the big deal. All I wanted was somewhere private, a baby bath, a bucket of warm water and a couple of towels. On the day of Little Chris' funeral, I was welcomed into the morgue by a vast array of towels, a blue bath and enough buckets of warm water to bath several babies. My wish to mother my baby, after his death, was fulfilled.

And yet, death is still this huge taboo. Lucky's dying was made all the worse by the lack of support on 1B. We are an ageing population and a whole lot of us are going to die. The way and the process of dying and the care of the family should be of paramount importance. We are learning to celebrate death through funerals. How about the dying person receives the "best" death possible and their family feels supported and encouraged before their family member's death?

When Michael is ready, I hope to accept Natalia Marais' offer to meet with the hospital. And I understand that some of our ideas may be stymied by the lack of the almighty dollar. However, I would hope that we can work together to introduce some long overdue changes.

I would be really grateful for any comments or suggestions to add to our list.

introduce allied health support (social work/psychology/generic or ecumenical services) available to support families, the dying and the nursing and medical staff, during all shifts.
produce a clear, simple, dot point pamphlet for families outlining what to expect during a loved one's death with clear options about who and how to ask for help
a "special" or floating member(s) of the nursing staff, available to assist the dying person and their family at times of staff shortages or at night.
opportunities for professional development of nursing staff facing the dying of one of their patients, including input from bereaved families.
a family advocate available to debrief/support/assist with families following the death of their family member, either immediately or at a time of mutual choosing.
an opportunity to spend time with the family member who had died. This actually happened after Michael's mum died in the hospital and we were very grateful. However, we were not offered this option after Lucky died.
every hospital to offer a quiet setting where families may spend time with the person who has died for twenty-four hours after the death
have adequate accommodation options on each ward to allow more than one family member to stay overnight. This could be as simple as a few folding beds allocated to each ward.
nursing staff to monitor the family's wellbeing and be proactive during a patient's death. A dying patient, regardless of their status, should have as much importance as a patient who will recover and leave alive.
A family's request to have an RMO review a dying patient to be given the same weight as any other patient. In my opinion, the nursing staff should advise and explain, but not have the final say as to whether an RMO attends a dying patient. If the family requests a medical review, then this service needs to be given out of courtesy, if for no other reason.

Another lengthy tome to ponder. Still really worthwhile.