Hospitals in London are beginning to adopt a cloud-based clinical service that helps exchange information for end-of-life care.

The hospitals are part of a wide range of caregivers able to access records and data in the system, part of a clinical service called Coordinate My Care (CMC), a service of the country’s National Health Service, which is using the cloud to improve end-of-life care for patients and to help save money at the same time.

Coordinate My Care is a clinical service of the National Health Service that coordinates with physicians, nurses, social workers and emergency service providers to ensure that patients’ end-of-life clinical care needs and care plans are accessible to any provider digitally.

Coordinate My Care lead Julia Riley
Coordinate My Care lead Julia Riley

The service was started in 2012. Through the use of downloadable information other web-based information, CMC educates patients and families about end-of-life care choices then helps them work with healthcare professionals to create a digital urgent care plan.

The approach solves a vexing problem—sharing treatment plans and patient preferences for care at the end of life widely. Typically, this information is paper-based or, if in digital format, may not be available to providers using different electronic health records systems.

Pressure is growing in the U.S. to improve the process for sharing information on advanced directives and other end-of-life care instructions.

To enable this information sharing in England, CMC uses HealthShare, a health informatics platform from InterSystems Corp. That product uses the cloud to hold health-related information and share it in a digital record format that is accessible to providers and emergency personnel who are signed up with the system and have been given permission by patients to access their records. InterSystems is the cloud provider for the service.

The platform permits easy access to patient records, says Julia Riley, CMC’s clinical lead. Hospitals that want to partner with CMC and participate can do so through interfaces from the InterSystems-based system to their records systems. Information is either available via web access or through alerts pegged to the electronic records of patients who have records on file.

“Fewer than four weeks after we launched the new system [with HealthShare], we had our first NHS Foundation Trust hospital, Hillingdon Hospital, connected,” Riley says.

Hospitals and other providers that link with CMC are able to use the HealthShare platform to securely and easily access information. For example, Hillingdon has an automated lookup capability for patients coming in, and alerts on its electronic patient records indicate that there is a CMC urgent care plan available for a patient.

The capability of accessing patients’ urgent care plans provides a variety of benefits to hospitals and other care providers. It improves care to patients and provides better service in meeting their wishes; and it conserves resources and saves money on care that may not be wanted or necessary, in the case of patients who don’t want extreme measures done or don’t want to be resuscitated.

“Most people want to share their wishes and preferences [about end of life care] somewhere,” says Riley, who is also a palliative care consultant for Royal Marsden and Royal Brompton Palliative Care Services.

Without coordination and access to records, it is difficult for the various providers on a care team–especially emergency care providers–to deliver the care a patient wants.

In a palliative care setting, where it is most likely that the patient will die, the decisions left to be made are “how” the person dies, where they die, and whether or not their wishes regarding their death are respected. It’s not surprising that most people choose to die at home, yet the vast majority of people don’t, typically because they were unable to communicate or to transmit their wishes in an effective way, says Riley.

Their doctors may not know what patients’ wishes are, or the family may disagree with the wishes or may not even know them. A unified way to deliver these wishes is very important, she says.

According to Riley, so far, 79 percent of CMC patients who have died have done so where they wanted to die. Only 17 percent died in the hospital, compared with 59 percent of patients overall.

The sample size is admittedly small—CMC has created only 25,000 care plans detailing their wishes for specific situations that may arise in their last days of life, such as whether they want to be kept in a hospital or whether they want specific types of life-sustaining measures. Results for that small population has been significant, in that the British National Health Service has saved the equivalent of $35 million in U.S. dollars.

Kathleen Aller, director of HealthShare business development at InterSystems, says it won’t be long before the U.S. follows England’s example. Aller expects end-of-life care coordination to take off soon in the U.S. For example, the Centers for Medicare and Medicaid Services (CMS) announced plans this year to pay for discussions between patients and providers about the patient’s wishes for end-of-life care.

Last October, when CMS issued plans to pay for short conversations on advance care directives, CMS Acting Administrator Andy Slavitt said the agency was persuaded to do so by the "large number of comments" supporting it.

End-of-life care also has significance in terms of streamlining expenses. Medicare pays out roughly one-quarter of its total reimbursement to beneficiaries who are in their last year of life, and this has been true for decades, according to the Kaiser Family Foundation. The high cost for care at the end of life is not surprising, given that many who die have multiple serious and complex conditions.

Policy and federal incentives for the use of advance directives are still in the early stages, but they are gaining traction in the national discussion. In a 2014 report on death and dying, the Institute of Medicine (IOM) said electronic storage of advance directives "holds promise for improving access to and effectiveness of these materials."

The IOM called for professional medical associations to establish quality standards for this advance care planning. "Payers and health care delivery organizations should adopt these standards as a necessary component of high-quality care for individuals with advanced serious illness and their families and enable them to seek these services from their physicians and providers," the report said.

The difficulty of meeting a patient’s wishes is particularly prevalent in end-of-life care, “where patients are seeing a variety of different teams, perhaps having to repeat their wishes over and over and during a time where physically and emotionally they are under a lot of stress,” Riley says.

Riley has very personal reasons for her involvement in CMC. Her twin nephews were christened in April 2007, and the very next day, her sister-in-law was diagnosed with a malignant melanoma. Seven months later, she died. The tumor had spread to her spinal cord and brain. As a young mother with four children, she wanted to be given palliative care at home. Painful headaches required her to be given high doses of opioids for pain.

“When we called out-of-hour services for help, they'd take one look at her doses and say, no, you've got to go to hospital, we can't prescribe these,” Riley says. “I cannot describe the problems we had with coordination of her care. And it didn't matter how many times we contacted the hospice or the hospital or the [physician], it was an ongoing battle to keep her at home.”

As far as the future goes, Riley says CMC and InterSystems are working on plans to expand the interface for patients to use directly. “Currently, the system is focused on health professionals as the drivers behind urgent care plan creation and maintenance. However, we believe that it is the patients who have the appetite to express their clinical wishes and initiate the creation of their own urgent care plans,’ she says. “[We] really believe it will be a huge step forward.”

But more than CMC’s contribution to healthcare savings and technological advances, Riley is pleased with how it affects an individual’s quality of life to the last day. ‘Dying is not a medical event. Dying is a social event. It’s a spiritual event. It’s a family event,” she says.

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