Providing consistent and humane end of life care

As a family, we have been through an experience with my dad that has highlighted there is still much to be done to more consistently offer services that help people to manage their own illness in a way that improves efficiency for the NHS.  

NHS England advocates reducing unwarranted variation in clinical quality and supports patients’ care at lower costs by integrating health and care using information and technology. All well established, sensible and effective measures.  

Variation across England in delivering these improvements is a detriment to better care and simple changes can make a big difference.  

Right to choose the right care

Towards the end of his life, my dad wanted to maintain his dignity and avoid medical heroics. In the last few months of his life, he struggled with his list of long term conditions, severe dementia and a number of chest infections.  

As his son and a life long NHS worker, I have reflected on both the impact on my dad from the lack of choice and the cost to the NHS; a link that is still contentious to some.  

My dad’s story isn’t about making an active choice to die, but rather the ability to recognise when the end of life is close and to choose the right care that is respected and communicated. Simply, he wanted to stay in his care home which felt safe, comfortable and calm.

I share his story to argue that we need to be more consistent in reducing clinical variation, using technology and offering choice whilst efficiently utilising NHS resources

With any trip away from home, he became scared and more confused. So, I share his story to argue that we need to be more geographically consistent in reducing clinical variation, using technology and offering choice whilst utilising NHS resources more efficiently.  

As with many with the devastating disease of dementia, my dad had been an independent and proud man. When his existing health problems were added to with dementia and he lost his independence, he was a very different man.  

Effectively sharing care plan

He lived in a wonderful care home but the support to keep him there wasn’t available when his needs changed.

So, as a family, over time, we agreed a care package that kept him at home and to let nature take its course and for no active treatment. Unfortunately for him, the care package wasn’t respected or effectively shared and the default was always to rush him to hospital.

Four times he ended up in an ambulance going to accident and emergency and being admitted to the high dependency unit, on various mechanical ventilation aids with painful blood gas analysis – the two things that caused him most distress.  

This was exactly what he didn’t want. The easiest option for clinical decision makers always seemed to be the availability of 24/7 emergency care, rather than out of hospital care that would have kept him at home or at a minimum a care record that was available, communicated and acted upon.

The last time he struggled with his chest in the care home, the latest different GP was called without having seen his records, a new ambulance team arrived resulting in a disposition to A&E.

The easiest option for clinical decision makers always seemed to be the availability of 24/7 emergency care, rather than out of hospital care that would have kept him at home

The junior doctor in A&E referred him to the respiratory team and he ended up in the high dependency unit and yet again mechanical ventilation started. Little notice was taken of his family or learning from the previous admissions. 

The problem was that the needs of an elderly man with complex health needs and his wish to be at home were not the priority, but a man with abnormal blood gases and a recurring chest infection. Whilst his chest infection was treated, my dad wasn’t.

Our aim for dad was for him to be pain free and comfortable but this contrasted with the medical team who were focused on reducing his carbon dioxide levels. When we discussed what a good outcome looked like with the doctors, we had vastly different views.

The aim of my dad’s care plan was to keep him safe and at home, which would have been better for him and more cost effective. The systems where my dad died were perfectly designed to pull him into the emergency pathway and alternatives seemed absent.  

Providing consistent care

Whilst the cost to the NHS is obvious with four seemingly inappropriate admissions to hospital, what is far more important is that we offer consistent care to everyone.  

Thus, enabling others to make choices, then supported in this care and avoiding unnecessary acute care. This is at the same time as being more efficient.

Reducing variation in clinical quality by respecting and communicating my dad’s care plan would have avoided his death in an acute bed

Reducing variation in clinical quality by respecting and communicating my dad’s care plan would have avoided his death in an acute bed and it would have freed a significant amount of staff time, resource and cost to the NHS.  

Redesigning out of hospital services and offering choices to access services like community nursing or hospice at home or innovative technology or an accessible patient record would have been better for my dad and more cost effective for the NHS.  

These are things that are well rehearsed but too much variation still exists.