Sue Hogston: “We only have one chance to get it right, so why are some still getting end of life care so wrong?”

Sue Hogston_Today’s report by the parliamentary and health service ombudsman demonstrates that end of life care could be improved for up to 355 000 people a year; highlighting tragic cases where people’s suffering could have been avoided or lessened with the right care and treatment.

Issues identified in the report as the most common within end of life care were:

• Poor communication, with families losing the chance to say goodbye to their loved ones;
• Poor planning leading to uncoordinated care;
• Inadequate out of hours services;
• Poor pain management, meaning that people spend their last days in pain when it can be avoided.

Poor communication and losing the chance to say goodbye

Timely, clear, and effective communication between the dying person and their loved ones is absolutely essential and what we have always believed to be the cornerstone of compassionate care. The importance of linking up people with services, and ensuring that the service they receive is timely and appropriate, is clear from the case studies in the report.

Across Sue Ryder, we help people to have difficult conversations every day and encourage people to talk openly about dying, death, and bereavement. This means that honest discussions take place earlier with patients and families about management options and place of care decisions, providing the opportunity for the dying person to communicate their practical and personal wishes directly. Ultimately, this provides more choice and control when the time comes and gives loved ones the opportunity to say a proper goodbye.

Recognition and acceptance of the inevitability of approaching death is a skill that all palliative clinicians have, however, this is not always something that those on the frontline of NHS care are comfortable or have enough experience and expertise with. Addressing this within the NHS requires a rethinking of the management of end of life patients—particularly as their needs are more often about care than cure, which can be difficult for acute services.

Investing in and training frontline NHS staff

It was over a year ago that “One Chance To Get It Right” was published, which set out five “Priorities for Care for Dying People.” These priorities sought to personalise decision making for dying people and their loved ones, giving guidance for hospital staff to ensure that they gave people who are dying the same sort of high quality care that people receive in a hospice as an inpatient or in their own home.

Today’s report demonstrates that those at the frontline of NHS care delivery still need to be better equipped to deal with and provide care for those who are at the end of life. The only way this can truly happen is to address the skills gap of frontline NHS care, and for proper investment in education and training to become embedded within the culture.

Uncoordinated care and inadequate out of ours services

A good death can be achieved through coordinated, personalised, and compassionate care.

Coordination is particularly critical, because when someone is diagnosed as end of life, they often have many healthcare services involved with looking after them. Without proper coordination, this can be an impossible situation and can lead to the kind of unacceptable experience highlighted by the ombudsman’s report.

Sue Ryder’s Partnership for Excellence in Palliative Support (PEPS) helps to make coordinating care as easy as possible for the patient and their family, providing a single point of contact through a 24 hour telephone service and coordinating care between 15 different organisations.

PEPS has enabled over 3000 dying people to receive coordinated care around the clock and has helped more people to avoid unnecessary hospital admissions; alleviating demand on the NHS and helping people be cared for and die in the place of their choice.

Dying doesn’t work 9 to 5

At Sue Ryder, we know firsthand how essential and beneficial 24/7 coordinated support services, such as PEPS, are for people and their loved ones at the end of life, but the reality is that a staggering 92% of areas lack the appropriate support services that people need and deserve. This lack of provision leaves people scared, alone, and desperate for help during times of need.

This is why we have been calling for the government and local areas to prioritise access to 24/7 coordinated support services with our “Dying doesn’t work 9 to 5” campaign. With three million people expected to die over the next parliament, we need to ensure that suitable end of life care provision and support becomes a reality now, as we cannot afford to get dying wrong.

Sue Hogston is chief nurse at Sue Ryder. 

Competing interests: None declared.