Patrick Kelly: An Appreciation

Addressing a Marie Curie organised conference on palliative and end of life care, Derry nurse, Linda Cooper, spoke movingly about her late father, Patrick Kelly (85), who died at home in June.

The focus of the event, which took place in Stormont this week, was the urgent need for a new palliative care strategy for the North and the resources to implement it fully.

Sharing her insightful experience of end of life care, Linda said: “In 1948, the NHS was created by Aneurin Bevan to meet the needs of everyone, free at the point of delivery, based on clinical need and not the ability to pay. Sir Winston Churchill coined the phrase, ‘care from the cradle to the grave’.

“We all put our trust in the NHS system and believe that when our time comes we will be cared for and have a pain-free and dignified death.

“When I started to train as a nurse, a while back now, the one thing that stuck with me over the years was that we had a duty to provide care to all our patients to aid their recovery and when this was no longer possible assist them towards a dignified and pain-free death.

“In NI, death and dying is still a taboo subject. None of us wants to think about our own mortality and our fragility and inevitable death. However, none of us can escape it, therefore, the first experience many of us have with palliative and end of life care (PEOL) is when we are in the centre of it. Often it is found lacking and not what we expected,” said Linda.

Linda said even she had not fully understood the difference between palliative and end of life care.

She added: “Palliative Care is provided to those patients whose condition is no longer treatable. It aims to treat symptoms and provide support for patient and family, whilst they come to terms with this realisation, and allows the patient to live their life to the fullest taking into account the restrictions they have by providing both physical, spiritual and emotional support.

“End of life care is just that. Providing care and support for the patient, and their family, as their life draws to a close. This often includes the provision of physical care such as washing, feeding and administering medication. Also, most importantly, pain management which can be a fine balance to control pain whilst allowing the patient to spend their last days with their loved ones in a meaningful manner.

“We only learned and understood this whilst our father was in the middle of this process.

“Our dad had been ill for many years with various health conditions, including heart-failure following a heart attack almost 20 years earlier, but in the last year of his life his condition slowly deteriorated. He lost weight, had a poor appetite, mobility decreased and experienced what he thought were side-effects from his medication.

“However, in hind-sight he was displaying the symptoms of chronic heart-failure and his medication became less effective.

Through all of this his mind remained sharp and he held out hope that eventually the medications could be changed to control these symptoms as he wanted to live until he was 100,” said Linda.

In May 2022, Linda’s father was hospitalised again with distressing symptoms of vertigo and breathlessness.

“Following investigation, his consultant explained to him and us that there was nothing else that could be done to control his symptoms. He was moving towards the end of his life,” recalled Linda.

“This was a very distressing and emotional time for everyone, but dad understood and made his peace with it. We were told it could be days or weeks but probably not months. All he wanted now was to go home.

“He was now added onto the palliative care register. Palliative care quickly became End of Life care for dad.

“We were preparing for him to come home, a hospital bed was in place and we discussed plans amongst the family.

“Prior to discharge we were given very little information regarding how palliative care worked, in fact we had to seek out the information for ourselves.”

Linda’s father was discharged home on Wednesday, June 1, 2022.

He arrived home in pain 8/10.
Linda said: “We then had to contact Out Of Hospital (OOH) to speak to someone to get him pain-relief urgently.

“Contacting OOH consists of phoning and providing basic details and then waiting for a call back, which can take some time, from the clinical co-ordinator who then advised that either the Marie Curie nurse or GP would attend.

“No timeframe was given. Of course, because dad was in so much pain we assumed that this would be an urgent call and help would arrive soon. The GP phoneD dad’s house and said that a prescription for morphine would have to be collected from OOH and filled before he arrived to administer it.

“He also said that due to dad’s weak condition, administering morphine may cause him to pass away. Our family were not all in Derry at this time and we were distraught that he might pass away without us having had a chance to see him, due to covid19 visiting had been restricted in the hospital. Those of us not in Derry had to then travel home whilst in a distressed state.”

Linda’s dad eventually got his morphine 1.5 hrs later and survived.

Over the next four days Patrick’s family had to attend OOH to collect prescriptions on five further occasions and have the prescriptions filled.

This meant they had to leave Patrick’s beside and visit several pharmacies to get the drugs.

“All in all dad was only home for less than 100 hours before he died and for 10 of these hours we weren’t with him. What would you do if you only had 100 hours left? You would want to be with the ones you loved,” said Linda.

“We were fortunate as a family that we had access to cars and enough of us that dad wasn’t left alone. Again, we were fortunate that we could afford to use the car to collect the prescriptions and the drugs. What happens to those people who do not have a family or don’t drive or can’t afford a taxi?

“Having the prescriptions filled involved visiting several pharmacies as not all pharmacies had all of the required drugs. You can’t split the prescription and get one drug here and another there. Also, as 20 ml amps of saline were unavailable due to supply issues the pharmacy wouldn’t issue us with 10ml amps instead as they were not prescribed.

“At no time during all of these pharmacy visits did anyone offer to phone around to check supplies to save us an unnecessary journey.

“One night over the weekend, due to exceptional circumstances, there was no Marie Curie nurse available. That night dad was again in acute pain and the on-call GP said he would come to the house to administer pain-relief. As dad was in acute pain we assumed that when we were told the GP would be out that it would be soon. It was two hours later, after another phone call from us, before he arrived. He was also carrying out home-visits for all other patients as well as looking after PEOL patients.

His call sheet noted that dad’s call was urgent and two hours was noted in the box. At no time were we told that it could take two hour, all the while dad was in acute pain,” said Linda.

Linda acknowledged that the nurses who cared for her dad in his final days were caring and compassionate.

“However, it was evident that they were stressed because they couldn’t deliver the care that they knew he needed.

“The PEOL ‘Living Matters, Dying Matters’ strategy talks about a holistic approach to individualised care but this is impossible to deliver when you have to travel up to 30 miles between patients to deliver the basic care.

“There is little time for emotional support for the patient and family when your next patient is waiting for you, possibly in pain too.

“On Sunday, June 5, it was finally decided that dad needed to have a syringe driver for pain relief. The drugs protocol stated that a patient had to receive Morphine 3 times in 24 hours before a syringe-driver would be considered. Whilst, I understand the reasons for protocols, this protocol was very rigid and not flexible to the needs of the patient, our dad. It was obvious from early on that he would require a syringe driver at some stage. However, not all of the drugs that were required were in our house. So, on the very day that dad died we were again away for two hours. His syringe driver was erected at 1pm and he died at 3.15pm,” said Linda poignantly.

Linda stressed none of the services or staff started out with the intention to cause obstruction/delays,

“However, the system was set up in such a way that these were inevitable,” she said.

“Every service and staff member that we encountered, although professional, caring and compassionate, didn’t seem to realise how their role was key in delivering the care needed to the patient, our dad. There was no real sense of a joined up approach, just different cogs all doing their thing but not really engaging.

“There are national strategies for: Maternity Care, Cancer and Mental Health. Most of us will never have to access these services. However, the one service that we will all be exposed to in one way or another, PEOL, doesn’t have a current strategy.

“Its 5 year strategy expired in 2015. To ensure that services are delivered when and where they are needed, strategies need to be LIVE and reviewed regularly to ensure they are still relevant. There is a great urgency for a new strategy for PEOL particularly now post-Covid 19 where new challenges, gaps in the current services and care needs have been identified.

“The strategy needs to be created with input from service users to ensure it delivers what the patients need. Its focus needs to be on working together for a common purpose.”
Linda said change did not have to be big.

“Small changes can have a big impact for example: Direct contact with the GP for the nursing staff; nurse prescribing; prescription delivery service; and electronic prescribing, some of which are currently being piloted.

“A telephone tree or online medication stock availability system; central, fully-stocked pharmacy 24/7, possibly located in healthcare facility; adequate staffing based on workload and clinical priorities; Robust and flexible drug protocols in place; and raising public awareness of PEOL and how they can be part of it, are also needed.”

Linda’s dad, Patrick, was born in 1937 (was 85)

“He was one good looking guy,” added Linda. “He met and married mum in 1962 and when she died in 1979, he raised seven daughters single-handedly. Some going I tell you, surrounded by women.

“He went to the Derry dances in his youth and loved to jive. He played snooker and his nickname was ‘Cautious Kelly’ he could make a snooker match last for hours.

“He was at the Bogside on Bloody Sunday. He was there when Dana won the Eurovision Song contest. He met Bill Clinton in 1995 and wrote a poem that was published.

“He loved his garden, roses were his favourite. He was a DIY fanatic and lived by the motto: ‘If it moves and it shouldn’t: use duct Tape; If it should move and it doesn’t: use WD40’. He also believed that Sudocrem was a cure-all

“He was a great storyteller and loved a good laugh. He dressed up at Hallowe’en, Christmas and parties. He had an encyclopedic memory and was always up to date with current affairs. Although he was grumpy sometimes, and who isn’t. He was our dad and we loved him.

“In his last days he was in extreme pain. He asked to die. Every pain, every scream and every tear, tore through our hearts and souls. Never to be forgotten. Both we and the GP promised him he wouldn’t be in pain and we failed him and the system failed us.

Now imagine that was your loved one. Please don’t let anyone else suffer unnecessarily.