Compassion in Dying and Molly Bartlett wrote for us about the benefits of sharing and recording end-of-life wishes digitally.

Molly’s story

Twenty years ago, I was diagnosed with kidney cancer and had a nephrectomy (an operation to remove my kidney). By 2013, I had three more tumours and decided not to pursue treatment. I decided to turn down active (non-curative) medical treatment and enjoy this crucial time in my life.

It was a huge choice to make but I felt time was very precious and there was still much to enjoy even though time may be limited.

After my decision, I was referred to my local hospice and with the help of their skilled team I was able to record my wishes for future treatment. My plans included:

– A DNACPR (do not attempt cardiopulmonary resuscitation) form

– An advance decision to refuse treatment (often called a living will)

– A detailed advance care plan and preferred priorities of care

– A ReSPECT form

For me, and for my partner too, getting these things in place at the time was really important and reassuring. It helped us to feel stronger and more in control. We were able to get on with living our days.

In an emergency, my wishes were known

I had an acute emergency recently and had to go to A&E. I ended up seeing a urologist, and because he’d read my advance care planning documents, there was no pressure to get me back into hospital, do more tests and explore any treatment options.

Several days after this episode, I collapsed at home and had to call an ambulance. The ambulance staff had read all my advance care planning paperwork and the ReSPECT form on the way to the call.  On arrival, they already realised I wanted to be made comfortable at home and be firmly on the palliative route.

I absolutely believe that completing the process of advance care planning and importantly the forms well in advance can help you to get what you want and make it more likely to happen.

The Palliative and End of Life Care Information Standard

Molly’s story demonstrates the positive impact of electronic end-of-life records, when implemented correctly and used by clinicians.

However, research carried out by the Professional Record Standards Body (PRSB) and Compassion in Dying in 2021 showed that too often electronic end-of-life records don’t work as they should or simply aren’t used.

The strongest message from the 1,700 people we spoke to, was that they experienced considerable anxiety that their end-of-life wishes and health information would not be known when it mattered. People were worried about:

– Paramedics not knowing their wishes and decisions

– Hospitals not knowing important information about their medication

– Cardiopulmonary resuscitation decisions not being communicated across settings and geographical boundaries

People told us crucial paper documents, such as advance decisions or DNACPR forms, were often lost or not uploaded to a shareable electronic record. Other times a person’s electronic record was not available to all the clinical specialties who needed to see it. And several people said records did not travel across geographical boundaries when they needed to.

They also told us that:

– Electronic records need to communicate people’s health information and end-of-life wishes seamlessly across care settings.

– Electronic records need to travel across geographical boundaries.

– At a minimum, people want to be able to view their end-of-life record to see what information is available to health and care professionals.

– Paper documents like Advance Decisions or DNACPR forms must be easily visible in someone’s electronic end-of life record to all health and care staff.

– People want to feel reassured that a healthcare professional will have the time to look at their electronic record

The existence of the Palliative and End of Life Care Information Standard is an important step forward to ensure that everyone has the same positive experience as Molly. Its implementation will be critical to achieving the change that people approaching the end-of-life need, if their wishes are to be known and respected when it matters most.

We share these experiences to support healthcare leaders, trainers and commissioners to embed the new Palliative and End of Life Care Information Standard in a meaningful way into clinical practice, in which people are at the centre of decisions about their care.