The pursuit of dignity in dying

One consequence of the national debate around the so-called ‘assisted dying’ bill, regardless of what your views on it might be, is a renewed focus on end-of-life care. 

It has even been suggested that the movement towards assisted dying is itself a reaction to an awareness of how far away we are from where we want to be in this area.

As doctors, we are trained to manage disease and extend life, and death is often seen as a failure of medical care. 

At the same time, death is something that we all have to face the reality is that, across almost every specialism, there are conditions which will sooner or later result in the death of a patient.

Comfort, dignity and agency

Rather than this being the preserve of a small number of clinicians who specialise in palliative medicine, the question of how we work with these particular patients and their families to plan and prepare for the eventuality of dying in a way that maximises comfort, dignity and agency, is something that we all need to think about.

Death is the one thing that we all share, and everyone will have their own stories to tell, both positive and negative.

My own experience of the passing of my grandmother is an example of what we should be aspiring to. Suffering from deteriorating dementia and aged 88, she received excellent care in her final months, supported by our family GP. 

"When either ourselves or a loved one is critically unwell, even when we are aware that they are terminally ill, we feel impelled to seek out medical intervention for them, usually by calling an ambulance"

At the end, she fell ill with pneumonia and a decision was made to not prescribe antibiotics, based on the slim chance of her recovering and the fact that she had very limited quality of life. Instead, the focus was on keeping her comfortable. The GP took the lead and guided the family through the process, providing full support to the care home and ensuring palliative care drugs were prescribed and in place over the festive period. She died in her own bed in residential care setting surrounded by family.

I am all too aware that for many this is often not the case. When either ourselves or a loved one is critically unwell, even when we are aware that they are terminally ill, we feel impelled to seek out medical intervention for them, usually by calling an ambulance. 

That final stay in the hospital does not prevent deterioration, deconditioning, resuscitation attempts or, in a small number of cases, a decision to not resuscitate. Nor does it prevent the same end that would have occurred had they been outside of hospital. 

We need a paradigm shift in the way that we as a health service, and as a society, approach the concept of dying. 

But, despite the undoubted care and compassion of my fellow clinicians, we have a system that is heavily focused on treatment within hospitals and a determined avoidance of death. So, rather than working with patients and their families to enable a peaceful, planned, managed death in a familiar environment, we are often putting patients through an impersonal and traumatic process, both physical and, in the case of someone with dementia like my grandmother, confusion and all of the associated psychological harm. 

It’s worth saying that there are starting to be movements in the opposite direction, not least through the drive to shift care out of hospitals into the community, and positive initiatives for those that do access hospitals, such as the last 1,000 days concept which aims to improve the experience of older people in the final years of life through a focus on patient time.

Nonetheless, we need to go much, much further and I see this as a personal mission.

We need a paradigm shift in the way that we as a health service, and as a society, approach the concept of dying. 

A big part of this is identifying what works well. 

There are two strands to this: clinical care itself in terms of treatment plans and, parallel to that, how we engage with patients and their families to understand their wishes and how those are communicated and enabled. For example, we know that ReSPECT forms, living wills, and DNRs all have the potential to return agency to patients, but each have their own drawbacks, and both uptake and understanding of these options are very limited.

Turning discussions into recommendations

This is something we have already discussed as part of the NHS Confederation’s Acute Clinical Reference Group, and we are now taking this further with a roundtable that will bring together a wider group of stakeholders – patient groups, care providers, medical schools and others to develop a series of recommendations.

It has been hinted by Wes Streeting that end-of-life care will feature as part of the ten-year plan. The terminally ill adults bill itself, in its current form, stipulates a requirement for a national assessment of the availability, quality and distribution of appropriate health services to persons with palliative and end-of-life care needs.

That is all positive, and it is important that our ambitions are supported at a national level. But fundamentally, the change we want to see will be realised at the level of services, and particularly at the level of clinicians. That process of change can begin now.

Dr Chris Pickering is a consultant in emergency medicine at University Hospitals of North Midlands NHS Trust. He supports the NHS Confederation’s Acute Network as a clinical adviser. You can connect with Chris on LinkedIn.