Justice for Lucky?

Lucky died at around five o'clock on 28 March. He died in a secluded room within Midland Hospital. He had been admitted to the Intensive Care Unit two Saturdays previously. Initially given a very bleak prognosis, he seemed to rally for twenty-four hours.  Faint hope for his recovery gave way to the unpleasant inevitable; Lucky was not going to survive this admission.

Whilst resident in ICU, he was given medication to support his blood pressure and heart rate. Daily blood tests painted a poor picture. As long as Lucky remained on a drug regime that needed to be closely monitored, he stayed in ICU. Lucky rebelled against his fate, battling to understand what was happening to him. Eventually, he accepted that all that could be done to maintain his life had been done.

Ceasing the supporting infusions took two days. Lucky was eating and drinking very little. He was also becoming increasingly agitated at night. Whilst he remained in ICU, there were nurses available to tend to him and give comfort to his family. Sandra and Darryl had stayed overnight with him, but they had not been left on their own with Lucky for any extended period.

One of the consultants on ICU whom we liked and trusted talked a great deal about three words - comfort, dignity and family. She assured us that  Lucky would be treated palliatively in an environment that would concentrate on keeping him comfortable and dignified.

This was not the care that was delivered on Ward 1B.

The first casualty of my complaint was the distinction drawn by Dr Glen Power, Chief executive officer "between a specialist palliative care service and provision of end-of-life or palliative care. While this hospital does provide palliative care, it also works cooperatively with the specialist palliative care service in our region, based at Kalamunda Hospital".

So, obviously, people need to check their options whilst they are dying and be admitted into an appropriate "specialist palliative care service".

But there's a catch. "SJGMPH...can refer patients to Kalamunda Hospital for palliative care as long as the predicted time of death is estimated to be greater than 48 hours...I am aware that your father in law passed away 27 and a half hours after he was transferred out of ICU and therefore this option was not available in the circumstances".

And at no stage did any of the medicos treating Lucky give us a time frame for his death. That was the situation we faced for ten days.

Placed in a room accessed through an airlock, the afternoon 1B staff received very little information from ICU. Lucky, not us, had requested a room in the Private Hospital.

"I am sorry that we were unable to meet your request as your father (in law - my italics) has been admitted to ICU from Emergency Department as a public patient during his episode of care."  Huh? Does that statement mean he couldn't then be transferred to a private ward on exiting ICU?

 The first nurse we saw expressed his frustration with the lack of a plan. Michael and I had agreed to stay with Lucky overnight. There were other family members coming in and out during the day. One of the registrars remarked that this was the time to say goodbye. No acknowledge of these points was made in the letter from Glen Power to me.

We were informed that the staff would no longer be performing observations. Unless we rang the nurses' bell, there would be minimal nursing support. "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."

All his drip lines had been removed in ICU. By late afternoon, Lucky was finding drinking increasingly difficult. so swallowing was an impossibility. We realised that he would need a line inserted for pain medications. "The ICU Head of Services has advised that the indwelling catheter (IDC) and Central Venous Catheter (CVC) were removed as they were no longer in use and posed an infection risk." Lucky had other lines in ICU. We were not talking about the IDC or the CVC. And infection risk? Give me a break. He was dying anyway.

As the evening wore on, Lucky became increasingly vocal and agitated. He was thrashing around in his bed, hitting his unprotected legs repeatedly into the bed rails.

With the intervention of the ward coordinator, we had been provided with two recliner chairs but sleep was impossible for any of us. Lucky moaned and cried and tossed and turned. Around midnight, we requested drugs to help his obvious distress. A subcutaneous line was inserted into his abdomen. The last word we heard Lucky say was "ow". "I am advised that the insertion of the subcutaneous line does not cause a significant level of discomfort, and any discomfort is temporary."

The 1B staff expressed their concern about giving him too much morphine. No acknowledgement by Glen Power.

We requested extra medication. After an hour, the nurses gave him a calmative as well as another half dose of morphine. We were berated for ringing the bell. One of the night nurses complained she had eight patients to look after and the other nurse had seven patients. We were asked - "Do you know it's only half an hour since you rang the bell?" No acknowledgement by Glen Power.

Lucky was soiling his pad frequently. We watched two of the night nurses changing him. They spoke forcefully to him to let go of the bed rails. They moved him backwards and forwards like a sack of potatoes. We struggled to recognise any decency in their treatment of him. "The medical record shows that your father in law received pressure area care and was repositioned with the use of a slide sheet and had his incontinence pad changed during the shift." 

We then asked for an urgent review by the night doctor and an increase in Lucky's medication. This was refused. Finally, another dose of morphine started to sooth him. Or he was spent. Sometime between three and four o'clock in the morning, his cries became softer and subsided and his body ceased his frantic movements. "I am advised that the nursing caregiver contacted the night RMO and he made the clinical decision (how!) not to attend or alter the medication regime ordered by the treating team based on the clinical information provided by the caregiver."  Give me strength.

One of the night nurses was outstanding in her compassion. She listened empathetically to us in those grim small hours of the last night, offered us a cup of tea and coffee and obviously spoke to the other nurses about our concerns of Lucky's care. Around four thirty, one of the other nurses came into the room, washed Lucky's face and swabbed his mouth.

We both slept fitfully for a couple of hours. Morning shift began. Sandra arrived to be with Lucky. Michael was shattered. I was not much better. We grabbed tea and coffee in the cafe. Michael was so upset he could not return to Lucky's room. We decided to go home for a sleep. We drove away, grieving not for Lucky's approaching death but for what had been the last night of his life.

Sandra rang us to let us know when Lucky died. We were incredibly sad. And we were so angry. Where had been the comfort and dignity for Lucky that we had been promised? After nine days in ICU, Lucky was taken and effectively dumped in a place that appeared to have received insufficient handover. And his last night on earth was harrowing. Just as well the two of us were with him. With scant support from the nursing staff, we were continually challenged to prevent Lucky from hurting himself further in his high state of agitation.

"I am very sorry that you believe your father in law's terminal restlessness was not managed well. To clarify, terminal restlessness is a common system during the terminal phase and it is estimated that between 25 to 85% of patients will experience some level of restlessness or agitation." Ye Gods. My only information about terminal restlessness was given by a nursing buddy, not by SJGMPH.

"Please be reassured that caregivers were monitoring your father in law's level of agitation and restlessness and the treating team had prescribed the appropriate medications." How could they be monitoring Lucky's condition if they didn't come into his room?

This is our reality of Lucky's decline. Michael and I remain very concerned about some of the attitudes communicated to us. The staff's overwhelming desire seemed to be following all medical protocols, rather than easing Lucky's suffering.

St John of God Midland Public Hospital is not a hospital for all. I am appalled at Lucky's suffering and equally appalled with this response. I only made this complaint to prevent other families experiencing such awfulness. I have been inundated with stories of similar deaths.

Lucky expressed a desire that I do not make him famous. The hospital system has fulfilled his wish with alacrity. He has become another invisible statistic. His death appears to have been in vain.

"Mrs Sofoulis, our caregivers endeavoured to provide a high standard of care to your father in law during his time at our hospital. SJGMPH are deeply concerned to learn that, despite having your father in law and your family's best interests at heart, we were unable to meet your expectations at all times."

If this is your sincere opinion, Dr Power, then perhaps your team could work harder, explain better, liaise more effectively, and endow comfort and dignity to patients and their families and have simple procedures and policies in place to inform patients and their families.

Otherwise, your letter to me, Dr Power, is only filled with political correctness, false compassion, an overwhelming desire to cover the hospital's arse and a dictionary of wank words.

And the moral of this story...this advice was given by a nurse. Ring the bell. Ring the bell. Keep ringing the bell. Until we are heard.