Why the care system makes a 'good death' so difficult

Evidence on end of life care repeatedly reveals major shortcomings, and a recent report into the care of people dying in hospitals highlighted some familiar issues.

As Jane Collins of Marie Curie Cancer Care observed in the foreword to the report by the Royal College of Physicians and Marie Curie Cancer Care, “we only have one chance to get end of life care right and sadly sometimes we don’t”.

My father died on 1 April this year. He was 84 and had been ill for some time with the rare blood condition myelodysplastic syndrome, where the bone marrow fails to produce enough healthy cells. It is a condition that is managed and supported rather than cured, and for Dad that meant blood transfusions every few weeks.

‘The days that followed took us on a bizarre and unpredictable journey where we often had little idea of what was happening’

Dad was relatively lucky; he had almost five years from the time of his diagnosis and for much of that time he was fairly well, although increasingly frail, gaunt and lacking energy, bruising and bleeding at the slightest knock. The big risk with the condition is infection. The immune system is compromised and the body has little ability to fight off infections. 

It was always likely that the end would come with an infection, and so it proved to be. Dad had wanted – as most people do – to end his days at home. He dreaded being “put away” in a care home and was fearful that if he went into hospital, he wouldn’t come out again. Sadly, that was what happened.

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Traumatic events

Admitted to hospital as an emergency with a suspected psoas abscess, we were told that his system was septic and organ failure was beginning to take hold; the best plan would be to keep him comfortable and hydrated. We were advised not to leave the hospital if we wanted to be with him at the end, and that he was unlikely to survive the night.

We agreed that in view of his frailty and poor prognosis, if he suffered cardiac arrest, resuscitation should not be attempted.

This was the start of a traumatic, rollercoaster period and the days that followed took us on a bizarre and unpredictable journey where we often had little idea of what was happening or what we could realistically expect.

‘We told the furious doctor that the clinical trial was not going to involve Dad, who had endured enough’

Intravenous fluids and antibiotics were set up, and slowly Dad seemed to respond. He made it through the first night and then through others. We saw multiple people over the days that followed and there seemed to be less clarity the more people were involved.

Having prepared ourselves for the worst, we were confused to find Dad apparently making progress, but we were given no clear information about where it was all leading.

Different teams proffered varying and conflicting diagnoses and prognoses. The surgical team continued to discuss surgical interventions; one consultant seemed to disregard everything about Dad’s symptoms and condition and announced that the future needed to be about “getting you eating properly again, get you up and about and back home”. This seemed unrealistic at best and ill informed at worst.

Other clinicians cautioned us that the antibiotics were probably masking the situation and that the improvement we were seeing would not be sustained. His own haematology consultant told us that he thought it unlikely Dad would survive.

Upsetting behaviour

Amid all the confusion, another doctor recruited Dad to a clinical trial for treating his infection with a combination of antibiotics. He assured us that Dad was able to give consent and had done so, and that he was informing the family “as a courtesy” but didn’t need our permission.

On reading the protocol for the drug trial, it was apparent that it would require Dad to swallow large tablets – when sipping water was about the only thing he was able to manage – and that there would be regular blood tests every few days to monitor impact.

‘We could never get a clear answer from the consultants and registrars, many of whom had no discernible social skills’

At this stage in his illness, Dad had tubes attached everywhere. His arms were a patchwork of black and purple bruises, and getting needles in for blood or to give fluids was becoming increasingly distressing and painful.

We told the furious doctor that the clinical trial was not going to involve Dad, who had endured enough; a nurse remarked privately to me that she thought the doctor’s behaviour had been “completely inappropriate”.

Over the next few days, things deteriorated. The problem with the psoas abscess returned and Dad was clearly in a lot of pain, which oral and injected morphine were doing little to alleviate. He would groan and grimace even when asleep.

Increasingly he was sleeping, but when he was awake, he was distressed and confused. Dad’s agitation and obvious pain was hard to witness. It was finally resolved following a visit from the Macmillan nurse, who requested a syringe driver be set up to deliver morphine at a constant level, although it still took time for it to be organised, as a doctor was not available to write it up.

It meant Dad was not fully conscious for most of the remaining time, but he was certainly calmer. The end came shortly after 11am on 1 April, and he went peacefully and almost imperceptibly. He was breathing small fluttery breaths one moment, and then he wasn’t. 

Dignity in dying

Was it a good death? I still don’t know if Dad knew he was dying. He spoke about feeling better and going home, but I think we all colluded in that.

Dad received excellent nursing care from compassionate, caring and gentle staff, who also showed the family great care, understanding and enabled us to be at the bedside any time of day and night. We are hugely grateful to them.

But – with some notable exceptions – we could never get a clear answer from the consultants and registrars, many of whom had no discernible social skills or any idea how to communicate with Dad or the family.

‘The confusion about whether Dad was dying or experiencing an acute episode was hard to make sense of’

End of life is a notoriously difficult event to predict with any certainty and we didn’t expect to know exactly what was happening from hour to hour, but the confusion about whether Dad was dying or experiencing an acute episode was much harder to make sense of.

We were lucky to have time to say goodbye, and to tell Dad we loved him and that he was safe, and I hope he heard all that and felt secure and unafraid. But it would have been better for us all if the doctors had told a consistent story from the start, which recognised the uncertainty of the situation but the likelihood of terminal decline, and which avoided the awful extremes of false hope and grim despair. 

Melanie Henwood is a health and social care consultant at Melanie Henwood Associates