Paternalism at the end of life: a narrative from two angles

The Liverpool Care Pathway (LCP) debate has brought to the surface an ever-present concern that doctors have a tendency to make decisions unilaterally. The suspicion that important decisions are being made without the involvement of  patients or relatives has led to accusations of paternalism and arrogance. My intention in this article is to show that this perception is, in some instances, mistaken. This is because behaviour may be interpreted incorrectly, and there may be insufficient understanding of the decision-making processes behind those apparently arbitrary behaviours.

 

A chain of events will be described from two points of view:

– a dying man’s daughter

–  a junior doctor involved in the decision to commence the patient on the LCP  

 

First, we hear the relative’s version.

“I knew my Dad had incurable cancer, we all did. He was two weeks out from his latest course of chemo when I heard from my brother that he had gone downhill. We went to see him and he looked awful, but he was talking, chatty even. And eating well. A bit yellow, which he hadn’t had before.

 

“We called an ambulance and I stayed with him for seven hours while he was seen, going through A & E (quite quickly actually), then arriving on the admissions ward. He was given fluids and these really perked him up. The doctor said he might have developed some kidney damage, and the blood tests showed definite liver damage. But we knew about the secondaries in the liver…they had looked stable on the last scan though. I went home. Next day I went in after work to see him and he was on the same admissions ward.

 

“I didn’t see the consultant in charge of that ward, it was very busy, but a cancer doctor we hadn’t met before did come to see him, or so I heard. He cancelled the next chemo session which wasn’t surprising. After that I don’t know what happened. He was transferred to another ward that night. I rang the next morning to see how he was getting on, and the nurse on this new ward said he was worse, more yellow, more drowsy. She didn’t talk about him dying. I said I would be in after work, and I got there by half-six but it took me another half an hour to find out where the new ward was. And he looked awful, really dehydrated. And more yellow.

 

“The nurse asked me if I had spoken to the doctor, and mentioned that the consultant had come round that morning. But no-one had called me. And there were no doctors on the ward, I think they’d gone home by then. I asked about the kidneys and she said they had got worse. The bag of fluid was gone, and I asked about that. The nurse said his cannula had come out accidentally, and because he was on the LCP they didn’t want to put another one in. That’s the first I heard of the LCP.

 

“That’s why I’m complaining, no-one spoke to me about it. They just decided, on their own, these doctors who had never even met him before. They decided that it was time for him to die. He was supposed to have another two chemo sessions, we were still hopeful. The papers are right to bring this up, it’s awful. He died the next day, early in the morning. I spent the whole night with him, they didn’t mind on the ward…but he was asleep…I hope he could hear me.”

 

The medical background

Mr Penny is known to have advanced bowel cancer with liver metastases, and despite ongoing chemotherapy has been admitted with a swollen abdomen and jaundice due to increasing burden of disease in the liver. Infection is quickly ruled out, but there is significant renal failure, likely due to dehydration. No other reversible causes for his deterioration can be found. The patient appears to have entered the final stage of his illness. 

 

The medical admission unit team contact his oncologist, who agrees over the telephone that no further life prolonging treatments are possible. He offers to visit Mr Penny after his morning clinic, and documents in the notes that further chemotherapy is inadvisable. Although Mr Penny can hold a brief conversation it is not possible for him to engage in a detailed discussion.

 

Mr Penny has now arrived on a medical ward after one day on the medical admission unit. The time really has come to focus on his comfort and not be distracted by other treatments or interventions that will bring about no meaningful improvement. He has stopped eating, but does sip at tea now and again, and occasionally nibbles on biscuits. To receive enough nutrition for his bodily needs, from a calorific point of view, a tube would have to be inserted in his nose.

 

The junior doctor’s narrative

The medical consultant responsible for the ward embarks on a ward round with his SHO (qualified for 18 months). They approach Mr Penny’s bedside. He is thin, jaundiced and sleepy – semi-comatose in fact. As the consultant leans over he asks if Mr Penny can hear him.  Mr Penny opens his eyes, meets the doctor’s gaze and appears to focus, but after thirty seconds he drifts off again. Pressing on his abdomen the consultant feels an enlarged, knobbly liver beneath the layer of fluid.

“He’s dying isn’t he?” he says, having edged away to where the curtains separate the bays.

“That’s what was handed over to me.” says the SHO.

“Observations?”

“Stable actually.”

“Do you know when the last CT scan was?”

“Two months. Stable disease then.”

“Well it’s not now. Has he been properly awake sister?”

“A few groans.”

“He should be on the LCP shouldn’t he?”

“I think so. He looks as though he’s got a couple of days at most.”

The SHO nods too.  She hasn’t seen many people die, but Mr Penny certainly looks close. All agree that the LCP is appropriate.

 

The consultant checks the drug chart and crosses out any irrelevant or unnecessary medication. These include a course of antibiotics for a chest infection that the admitting doctor thought he might have, but which was not confirmed on X-ray. There are also four cardiac tablets that were prescribed seven years ago when he had a heart attack. They will make no difference to him.

 

The consultant asks the nursing sister which family members have been seen on the ward. There is a daughter who attends when she can, usually later in the day. She is fully aware of her father’s terminal condition but the nurse has no idea if she knows how close to death he is. It is arranged that the paperwork will be completed by the SHO after the ward round, but her consultant emphasises how important it is for the daughter to be informed. Then the small team moves onto the next patient.

 

At the end of the ward round the consultant leaves and the SHO examines her list of tasks. There are many of them…and it was made clear to her that the urgent clinical tasks should be prioritised. It takes her two hours to complete them. When she returns to the ward, after lunch, the nurse in charge gives her a fresh LCP document and asks her to complete the medical sections. She looks at those paragraphs that remind and require the medical team to check that the next of kin has been informed and are in agreement, but she cannot fill them out or tick those boxes because she has not yet spoken with the patient’s daughter. Nevertheless she feels that it is important to complete the document because the decision has been made, and the care that her patient requires is encapsulated within it. She asks the nurse to contact the patient’s daughter and request that she attend as soon as possible. A message comes back that the daughter will be arriving at 6:00 or 6:15. The SHO was planning to leave at 6:30, having committed to a Zumba class (she is aware of the juxtaposition, of the trivial and the grave, and accepts that she may miss it).

 

At 4:30 the SHO passes Mr Penny’s bed and focuses on the task of communication again. Should she ring the daughter? She sits at the nurses’ station, opens the notes and reads the home, work and mobile numbers. She lifts the phone, but hesitates.  What if Mr Penny’s daughter is in an office, with colleagues?  Or in a meeting?  What are the right words? She will be here in two hours, at the latest.  Should you tell someone, over the phone, that their Dad is dying?  She puts the phone down, and stares out the window, flummoxed. Her bleep goes off.  Another patient, on another ward, has become unstable and it takes an hour to administer urgent treatment and transfer the patient to intensive care. This causes delays in all the other tasks and by 6:00 the SHO is well behind. The conversation with Mr Penny’s daughter has been relegated.

 

The SHO arrives back on the ward until 6:30. She has tried to hand over some of the jobs to the doctor covering the evening shift. She cannot find someone else to have the conversation, for it requires someone who knows the patient well. It crosses her mind that the consultant could have offered, but he made it clear that he was in meeting at lunchtime and in clinic all afternoon; to be fair he did say he could speak with the family at ten o’clock next morning.  Should she not complete the LCP?  Mr Penny has been comfortable all afternoon and has required only one small injection of morphine for abdominal pain due to the swelling with his liver. The LCP is not needed for morphine to be given, its absence does not stop any palliative treatment.  But the nurses keep asking for it to be done…that was the plan on the ward round, that is what is expected.

 

At 6:30 the junior doctor walks up the ward to see if the Mr Penny’s daughter has arrived but the chairs around the bed are empty. She knows that the parking is terrible around the hospital. And then her bleep goes off again and she is called away. She never comes back to the ward. She leaves for home at 7:30 and in all honesty the arrival of her dying patient’s daughter slips to the back of her busy mind. She hopes that when the daughter arrives a well-informed nurse will talk through the current situation. There were no indicators that the man would deteriorate quickly overnight. The necessary conversation can be had next day. It can wait.


Next day the junior arrives for work and suddenly remembers the importance of her mission. She walks past the nurses’ station and heads to the end of the ward. She sees that the bed is empty. She asks the nurse what happened and sees that she has a grim expression.

“What happened?”

“He died early this morning, around 8:30. His daughter came in last night, you missed her I think, and she stayed all night.”

“Was she OK?”

“No. She got quite distressed when she found he could hardly speak…and his breathing had become really shallow. She was present when he died at least, but looked really unhappy when she learnt that he was on Liverpool Care Pathway. Said the decision to do this had been taken without her consent or knowledge. I think she’s going to complain.”

 

 

[This is a fictional but illustrative case.]

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