Digital approaches to advance care planning: How are they used, and what else is needed?
Advance Care Planning is a process that ‘enables individuals to identify their values, to reflect upon the meanings and consequences of severe illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family members and healthcare providers’.
If patients’ preferences are readily available to healthcare providers at the point of need, it can significantly impact the care they receive.
Digital systems have the potential to revolutionise advance care planning. They can support real-time documentation of patients’ advance care planning information, which is then securely stored directly in their digital health records. These digital approaches can capture and store elements of advance care planning information, from advance statements of wishes and preferences to details of lasting power of attorney.
National end-of-life care policy advocates for using digital systems to facilitate advance care planning in all palliative care settings. Users’ perspectives are crucial in ensuring these systems are user-friendly and effective. Our project was developed with this in mind, aiming to improve the quality and efficiency of care for patients with progressive chronic illnesses.
What we did
We heard from 737 potential users of these systems, including community and hospital-based healthcare professionals, patients, and caregivers. They told us about their experiences using these systems and how they anticipated these systems would support advance care planning.
What we found
Nationally, there is widespread variation in the types of systems available and how health professionals use them to support advance care planning. There is also debate about whether systems should be available to people nearing the end of life or for anyone in case of future need.
Digital systems supported the documentation of advance care plans but were less helpful in sharing them. Care homes, ambulance teams and some hospital teams were the least likely to have access to electronic advance care plans and needed to find other ways to share this information.
We do use to some extent the PEACE plans, proactive elderly advanced or anticipatory care plans. They can be created either electronically or in paper format and uploaded to the patient electronic record. Most care homes in our area don’t have direct access [to shared digital system] so we are sending patients out from hospital to care homes with paper PEACE plans.
Specialist palliative care nurse (Acute Trust)
Patients and carers wanted their plans to be seen by health professionals who don’t know them but wondered if this would happen based on previous experiences where their medical information had not been viewed when expected. They talked about non-governmental organisations – Compassion in Dying, AGE UK and Macmillan – who had supported them with creating advance care plans. However, there was reluctance and uncertainty about transferring these plans to digital systems being used by healthcare professionals.
I don’t want to bother my doctor with it because it says the next stage, take this to your doctor and have it registered. I have a long and very happy relationship with my doctor and I’m sure he would do that but he’s incredibly busy as most GPs are.
Patient
Patients wanted to record personal information that would enable them to receive better care in various situations and care settings.
I think these records need to have a more rounded view of what makes this person tick. I’m not just my NHS number. I’m not just stage 4 prostate cancer … there are things that I haven’t needed to do before, things that I haven’t needed to think about before I’m now having to do and think about, it’s changed my life but nevertheless I’m much more than my diagnosis and any medical practitioner needs to know that.
Patient
Patients wanted access to their own records to check the accuracy and relevance of their stored advance care planning information. They also wanted to be able to allow access rights to designated family members or informal carers.
They [family] could access it and process it … ‘cos then everybody can look at it and everybody can keep abreast of what’s going on as well ‘cos one of the hardest things I find is you tell the same story. So, I go to the hospital and then I discuss it with [husband], I discuss it with the children, I discuss it with my brother.”
Patient
Recommendations
Healthcare organisations should co-design local guidelines with healthcare professionals, patients and carers, to specify who digital advance care planning systems are intended for and how they should be used in care delivery.
Organisations should invest in technology to enable interconnectivity between systems. Interconnectivity will allow authorised health and social care workers in various care settings to access their patients’ GP records.
It is crucial that any limitations of sharing digital information between services should be clear to health professionals and communicated to patients, promoting transparency, and managing expectations.
Systems designers may consider developing functions that would enable patients to view the advance care planning information documented about them. Enabling access for patient-designated others may provide support for families advocating on their behalf.