The importance of asking questions about care

By Sheila O'Kelly

27/3/2014

Pat McEnroy's wife, Jane, developed type 1 diabetes as a child, but sadly died at the end of 2012 after developing renal failure.

Jane was in her 50s. She had been very ill for some years and she and Pat found it a great struggle to get clear diagnoses and to negotiate the healthcare system.

Pat would advise all patients and their families to ask questions. "A lot of us engage with medical services and we say nothing. We just take the diagnosis and the prescription and we go away," Pat said.

People with diabetes also need to ask about issues relating to quality of life and long-term complications, said Pat.

"I was in and out of hospital regularly, but I felt there was no connection with me about clinical conditions or clinical conversations."

Jane had severe kidney problems and was on dialysis for some time. It was only when it was clear that Jane was nearing the end of her life that staff told Pat that for some time they had noticed her deterioration.

Pat would have liked to have been told this earlier so that he could prepare himself better.

"It's not that I could have changed anything, but I would have had an awareness that while I was very busy at work, I might have to shove that aside and maybe do something else. That part of a lovely life was going, which I didn't realise. I feel that has not helped in the sense of grief closure."

Jane was always conscientious about measuring her blood sugars and taking her insulin, but in the early to mid-1990s she began to feel unwell. This included having unexplained severe hypos (episodes of extremely low blood sugar).

At first, Pat said, Jane was told: "Well Mrs McEnroy, you've had diabetes for so long what do you expect?"

Jane then switched to a new consultant, who she felt she could communicate with very well. He sent her into hospital for 10 days' of tests. Jane was diagnosed with coeliac disease. When Jane went on a gluten-free diet, the hypo problems reduced considerably.

Jane was very happy with her new consultant, and it was a severe blow to her when he retired. She then moved to another consultant, but neither she nor Pat felt the same sense of empathy with him.

At this stage Jane's overall well-being was deteriorating. She was very tired and had to move to part-time work and then had to stop working entirely. She felt nauseous a loft of the time and was dry retching. She would stay in bed in the mornings and get up at lunchtime.

For two consecutive years, Jane was in hospital for a few weeks over Christmas.

When Pat visited Jane one night in the hospital he found her in tears because a scheduled test was cancelled.

"I'm here for weeks and nothing is happening," Jane told Pat.

They built up strong relationships with some nurses. Pat felt that other nurses carried out their clinical functional duty, but their people skills were lacking.

The nausea stopped for a period and Jane was discharged home. However, it came back and Jane and Pat felt they did not have a clear diagnosis of what was wrong.

The nausea and dry retching began again and Jane was readmitted. Tests were being done but they did not make it any clearer to the couple.

"What was really happening, and we didn't know it at the time, was that Jane was coming into end-stage renal failure," said Pat. "The doctor said to Jane on a Friday: ‘You can go home now, but I won't push you, you make your decision'." Jane chose to stay.

"The doctor came in on Monday morning and read the nurse's chart. He could then see that Jane had been vomiting on Saturday and Sunday. And he was going to discharge her on the Friday...this was very puzzling to us," said Pat.

Jane was discharged a short time later.

"A few days later the whole scenario came up again and she went back to the outpatient clinic and said, ‘I'm still the way I am'. Her life quality was really going down. She was going around everywhere with her little plastic bowl. I felt we were getting nowhere and I didn't know what to do," said Pat.

"Jane was readmitted to hospital and a renal (kidney) ultrasound was done on a Thursday. Over time Jane began to have dialysis for three hours, three times a week. She felt better on dialysis. She stopped being nauseous,"

"With the end-stage renal failure, life dramatically changed.  With diabetes she could manage and she was mobile. The human thing - she enjoyed weekend breaks, she loved travel."

"When we came into the renal stage a lot of that went because she was tied to dialysis three days a week for four hours,". Jane became severely ill again and was readmitted to hospital.

"I found with the renal ward, there were nurses who were lovely that you had a strong relationship with; and there were other nurses who were just clinically functional. You got to know them."

Pat left the hospital one Sunday morning and returned in the afternoon to find Jane's sister visiting and that Jane had deteriorated.

"The clinical communication was nil. There was no one assigned to say 'talk to that person'. All I know is that Jane's sister was very upset when I came on to the floor. I realised something was amiss."

"Nobody said anything and I felt that clinical communication with me was very very poor. Looking back on it, the warning signs were there - I didn't see them. I would have liked if someone had said ‘Pat, this is the situation'.

"The thing that hurt me was that when she was in this state from Sunday until about Wednesday at about three o'clock. No one said anything to me."

"I wasn't strong enough to ask the questions. Jane was always stronger than me in life."

"I was in the hospital on Wednesday afternoon and she suddenly came back to normal."

"On the Thursday night around half 11, just before I left the hospital, we had our usual coffee, went into the television room to watch the 9 o'clock news. She put her head on my shoulder and said 'Pat I'm not able for this, I want to go back to bed'."

"The following morning at half nine I got a call from a nurse who said Jane had a bad night."

"Things weren't well. I knew she wasn't well, but I didn't expect what I saw. I walked into her ward and a man had taken her place in her bed."  Pat was told that Jane had had a bad turn during the night and she was being transferred to ICU.

"I still didn't mentally realise what was happening. I was then brought to see Jane. What I saw was that she was on a ventilator. She was on an insulin pump, various contraptions and a heart monitor, and a renal dialysis machine."

"ICU was a totally different scenario; you could only have two people allowed in at either side of the bed. There were times that Jane had to be changed and washed. I felt it. She could not manage for herself. Emotions were high," said Pat.

The following Monday Pat asked the doctor 'Is Jane at end-of-life stage, what's happening in ICU?'.

"He said: 'Pat, we do not have a diagnosis. She's in a holding capacity, she's induced into a coma to allow the body to rest, to relax the whole situation and we're waiting. You and I will have this conversation again on Friday morning'."

"So I was no wiser as to what was happening. I was aware they were doing a detailed MRI scan on the Thursday evening."

I had asked Jane's two brothers in to come to the hospital.

"On the Friday morning I met the doctor and he said: ‘Yes, Jane is at end-of-life stage now'. That was a shock. I said is there to be any rescue attempt? But the MRI had picked up phenomenal damage in the brain."

"I went back to see Jane and put my arms around the nurse I knew there and cried. She cried with me. I thought that was very human. This nurse was one of a number of nurses that Jane and I had a very strong rapport with."

"In ICU I built up a very strong relationship with the nurses during the week. And I was on first name terms. They were saying to me, 'Pat, you are here till half two or three in the morning, would you not consider getting plenty of sleep and eating adequately - you may need your strength at a later date'. They were subtly dropping hints to me, which I did not want to take on board. They were very kind to me," Pat said.

During the week, Pat got chatting with the family of another man who was also dying. On the Wednesday night a priest was called when this man died.

"On the Friday night at about half two, one of the nurses I was friendly with put her arms around me and said, 'Pat I'm going off duty and I might not see you when I get back on Monday'. We both cried. You build a relationship with nurses. On Saturday it was totally different. The weekend staff - I had no relationship with anyone," said Pat.

"I came in on the Saturday morning and there was a nurse I had never met before. The first thing she said to me was, 'Pat I'll have to arrange for you to see an ICU doctor about the timing of taking out the tube'. I felt this was very clinical and without sensitivity," said Pat.

One of the doctors Pat and Jane were comfortable with was very helpful. He told Pat there would come a time during the day when they would have to make the decision.

"You will not be able emotionally, I will have to make the decision for you," Pat said the doctor told him. "He did that. I was grateful and very thankful."

"The fateful hour arrived. When I heard the priest being called I knew. A nurse I did not know took out the tubes and disconnected all the machines."

"Towards the end Jane was breathing, then there would be a sudden stop, then the pace would reduce, then at 4.45, she was gone. Jane's sister-in-law told me later that she spotted the doctor in a corner in the room crying. Very human," said Pat.

"About twenty to eight I looked out. There were all these beds, Nurses at their stations, life was going on. I was broken. //The lovely life extinguished. I went over to the nurses' station, there was a nurse there I didn't know, Jane's file was on the desk, I was looking through it. All the nurse said to me was: ‘You know that file will go into archive and after a number of years it will be destroyed'."

"I said to myself, I am looking for something emotional from someone, and about to leave Jane for the last time. Nobody offered me a cup of tea, or put their arm around me."

"I went back into the waiting room where my two brothers and Jane's sister were waiting for me. I was broken- hearted and I felt an emptiness," said Pat.

"We were leaving the hospital to go for something to eat and I said, 'no', I'm going back into the renal ward. They said 'they'll be busy with the change over, leave it'. I said ‘no. I'll follow you'. So I went back up and round to the renal nurses' station where they were all sitting doing the day and night handover."

Some of the nurses he knew had come on duty.

"I got a hug, I got a lot of support, a lot of sympathy. I felt what I lacked leaving ICU, I got in spades in the renal ward. I felt I could not leave the hospital, the way I was leaving, without some degree of emotional support. It meant kind of a closure," said Pat.

Pat was very touched to receive a sympathy card from a doctor that they had only had a little contact with. It was the only card he received from a doctor. Pat goes to visit Jane's grave every week and talks to her.

Her headstone reads: Now in the next life with family and friends gone before, looking out for those of us who remain, the treasured memories of a lovely person will remain strong with us for ever.

(This article also appears in Diabetes Ireland magazine, published by Medmedia)


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