IT solutions critical to new end-of-life care services

Innovative IT solutions are expected to become a crucial tool helping to co-ordinate future end-of-life care following the Government’s decision last week to axe the controversial Liverpool Care Pathway (LCP).

The Department of Health has revealed the palliative care system will be phased out over the next 6-12 months and replaced with an individual approach for each patient agreed with a named senior clinician.

The move follows an independent inquiry headed by Baroness Julia Neuberger looking at the impact of the LCP on patients and their families. Her report found ‘substantial and shocking failings’ in the care of the dying, adding that patients were left in ‘considerable pain’ and suffering distress because expert palliative care teams did not work in the evenings or at weekends.

Some of what we uncovered was truly dreadful, especially for those patients whose condition deteriorated at the start of a bank holiday weekend, when consultants were off on holiday and junior doctors left in charge

“Some of what we uncovered was truly dreadful, especially for those patients whose condition deteriorated at the start of a bank holiday weekend, when consultants were off on holiday and junior doctors left in charge,” she said.

Now the Department of Health has demanded all hospitals undertake clinical reviews of all care given to dying patients, led by senior clinicians; and put arrangements in place for each patient to have a named clinician responsible for their care in the final hours and days of their life. NHS England will also work with GP clinical commissioning groups to end local financial incentives for hospitals to promote a certain type of care for dying patients.

The LCP will be replaced with personalised care plans backed up by condition-specific good practice guidance agreed with a senior clinician. The Care Quality Commission will undertake a thematic review into end-of-life care and three new chief inspectors will consider the issues as they develop their new approach to inspections.

In order to help clinicians monitor their patients and the end-of-life care they receive, innovative IT solutions are currently being developed. An example of this is the London-based Coordinate My Care (CMC).

The system is an NHS service currently only available in London and hosted by the Royal Marsden NHS Foundation Trust, one of the country’s leading cancer centres.

It captures the wishes of patients with life-limiting illnesses and places them at the heart of all care decisions - allowing them to electronically record their wishes for care and treatment, including preferences for resuscitation, place of death and organ donation. The programme can then communicate their wishes to anyone delivering the patient's care, inside and outside of normal hours.

More than three quarters of the people who have died while on the Co-ordinate My Care programme have died where they've wanted to, and that's provided tremendous peace of mind for them and their loved ones

The solution was recognised in Baroness Neuberger’s report as an example of how innovative solutions can support patients’ end-of-life care choices.

Dr Julia Riley, clinical lead of Coordinate My Care and head of palliative medicine at The Royal Marsden and Royal Brompton NHS trusts, welcomed the Government’s move, adding: "Currently, in England, the majority of people die in hospital. However, when Coordinate My Care is used to create a care plan and establish their preferences, only 20% die in hospital. Significant numbers of patients can fulfil their wish to die at home, in a care home or in a hospice.

"More than three quarters of the people who have died while on the Co-ordinate My Care programme have died where they've wanted to, and that's provided tremendous peace of mind for them and their loved ones.”

She said one of the key strengths of Coordinate My Care is that records are created by a trained clinician who sits and discusses options with the patient.

"When a new record is created, the emergency services are immediately alerted,” she added. “The record can only be accessed by those who have a legitimate relationship with the patient, including the patient's GP, community nurses, hospital team, out-of-hours doctors, specialist nurses, the London Ambulance Service and NHS 111. This ensures the patient's wishes are fully documented and transparent."

Recently, £1.5m has been secured from NHS England (London Region) and the three London Local Education and Training Boards (LETBs) to support further development of Coordinate My Care's IT system so it can ‘talk' to all other clinical systems in the country and also for ongoing teaching and training of clinical staff on how to communicate and create care plans. This will further allow CMC to facilitate a system-wide approach to improving end-of-life care.

This means that the default response of the healthcare system isn't always that the patient is taken directly to A&E. The patient is taken where they wish to go

"Should a patient suffer a crisis and an ambulance is called, the Coordinate My Care record is automatically flagged, allowing the medical professionals involved to quickly understand the condition of the patient , the treatment they wish to receive and where they want this given," said Dr Riley.

"It may mean they are given treatment at home or they may immediately be transferred to the hospice or similar unit they have chosen in their locality for symptom control. This means that the default response of the healthcare system isn't always that the patient is taken directly to A&E. The patient is taken where they wish to go."

A subsequent benefit to this approach, which will be shown in soon-to-be-released research data, is that Coordinate My Care is succeeding in decreasing A&E attendance and hospital admissions.