Have you had the discussion about your healthcare support in the future?

Written by: Dr Juliet Spiller, Consultant in Palliative Medicine, Marie Curie Hospice Edinburgh

Published: 27/03/2018

ReSPECT is a new approach to thinking ahead about how we would like to be cared for in the event of unexpected medical emergencies.

The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process involves people and healthcare professionals discussing and recording agreed recommendations for their care and treatment. The process, which has never been attempted before on a UK-wide scale, represents a significant improvement to existing practice, when quick decisions have to be made in the absence of a record of personal wishes.

The ReSPECT process is being developed in response to recent publicity and increasing awareness around the need for all of us to think about what we want to happen if we, or our loved ones, experience an unexpected health care crisis.  This is often referred to as advance care planning and is particularly relevant for those living with complex and long term or life-limiting illness.  Advance or anticipatory care planning (ACP) is often associated in people’s minds with planning for end of life care and may therefore not seem relevant or even desirable for those who feel that particular part life’s journey is still a long way off.  However, a healthcare crisis can happen to anyone at any time of their lives. In the midst of an emergency, clinicians (doctors, nurses or paramedics) have to make very rapid decisions about what to do at a time when you may be too unwell to make your wishes known.

This is especially challenging as emergency clinicians rarely know the patient they are called to see and may not have access to vital information.  Even when a person does have an ACP or an advance directive  (‘living will’) these paper documents may not be easily accessed or readable in a crisis.  Family or friends may not be present, but even when they are, they often later reflect how traumatised they felt by being asked to be decision-makers in an emergency.  Many report feeling panicked by the sudden reality of possible death of their loved one. This may result in more aggressive medical treatments being asked for, which perhaps the person would not have wanted.   If the person dies in the ambulance or in the emergency department of a hospital, loved ones can struggle with guilt, feeling that they were not supported to do the right thing when it really mattered.

At the heart of the ReSPECT process is the conversations that take place between individuals, their carers and families, and professionals.  At the moment, people seldom have these conversations unless prompted by health or social care professionals, but it is important to know that professionals can support us all to make more realistic and individualised decisions that fit with what matters most to us. A health care professional who knows the person can explain how certain treatments might or might not help achieve their wishes, especially in an emergency situation.

The ReSPECT form which emerges from these conversations, records the types of care and treatment that that a person would or would not want, whilst taking account of what is clinically realistic and possible.

The ReSPECT process aligns with and supports all existing ACP initiatives and has been developed by a wide range of stakeholders including patients, bereaved carers, doctors, nurses, and ambulance clinicians. Although the ReSPECT process is for anyone, it may be of more benefit to people living with complex or specific health needs, people who may be nearing the end of their lives, people at risk of sudden deterioration or cardiac arrest, or people who want to record their care and treatment preferences in case of an unforeseen emergency.

The ReSPECT process is currently being trialled and evaluated in several sites across the UK, including two health boards in Scotland. However, once the process has been adopted and implemented in local healthcare areas, it will be available to all of us through healthcare professionals.  Work is progressing to ensure that the information gathered through the ReSPECT process can be shared and safely communicated electronically so that it is available wherever the person is and whatever record system emergency clinicians are using.

More information, resources, guidance and supporting documents can be found at www.respectprocess.org.uk (this link will take you away from our website).







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