The new ReSPECT (Recommended Summary Plan for Emergency Treatment and Care) process was made public last week. Central to the ReSPECT process is a two-sided form, which allows clinicians to record a summary of discussions with patients about how they want to be treated in an emergency. Crucially, it allows patients to indicate the extent to which they want to prioritise sustaining their life or prioritise being comfortable and pain-free.
By incorporating a patient’s wishes and providing a level of detail beyond ‘do’ or ‘do not’ attempt resuscitation found in widely used DNACPR forms, the ReSPECT form was developed with the aim of facilitating person-centred care, and improving public and media perception of how resuscitation decisions are made.
The ReSPECT process is a welcome step towards person-centred decision-making in emergency situations and at the end of life. For people to have the death that is right for them it is essential that they are involved in decisions about their care and that they are empowered to make choices, know what questions to ask their doctor and feel able to make informed decisions. We hope that ReSPECT will help to achieve this by ensuring everyone is given the opportunity to discuss their preferences and goals for the end of life.
The wishes of the individual being treated must be central to any clinical decision. We know from speaking to our service users that the voice of the patient is not always heard. Many people report that doctors are sometimes unwilling or unable to discuss the realities of dying, others report that doctors do not have the time needed to have sensitive conversations.
We recently commissioned Britain Thinks to interview dying people. Their findings reveal that there significant failings in some end-of-life communication:
‘When you ask a question [the doctors] just don’t answer it. They go on to a different topic. They don’t want to be face-to-face when you say what happens when this fails – like they just look at each other and change the topic.’
‘I have never had a doctor or a nurse really that is happy to sit and talk about how long they think [I have left to live]. And whether it’s about protection or whether it’s difficult or uncomfortable for them, it is probably a little bit of both.’
In 2014, the Court of Appeal ruled that people with mental capacity have the legal right to be notified when a do not attempt cardiopulmonary resuscitation (DNACPR) order is placed on their medical records. This ruling was made following the death of Janet Tracey in 2011, who was given a DNACPR order without clinicians informing her of their decision. In a recent BMJ article, Janet’s daughter, Kate Masters, illustrated that the challenge of getting doctors to buy-in to a person-centred approach goes beyond issuing new guidelines and developing new processes:
‘Since the end of the case in June 2014 I’ve spoken to many doctors who say that this legal duty causes them problems.
For example: “Why should we discuss something that won’t work?” “We don’t have time.” “There’s no privacy.” “We can’t get hold of the relatives.” “It always happens in the middle of the night.” “Patients get upset when you talk about death.” “It’s hard to talk about death when we’re trained to save lives.” “CPR isn’t like it is on Holby City.”’
ReSPECT is a positive step in the right direction, but the barriers that need to be overcome are evidently widespread and often deeply ingrained.
It is vital that ‘authority’ over decision-making is not held exclusively in the hands of doctors. ReSPECT is a clinician-led process and therefore key to its success will be ensuring that it is implemented in a way that truly puts the patient at the heart of decision-making. It cannot be part of a rushed or tokenistic conversation and healthcare professionals should not brush over the process with jargon or euphemisms.
New forms can be designed to prompt conversations and make them easier, but they don’t change attitudes towards death and dying, neither amongst clinicians or the public. A change in practice and culture is needed to enable person-centred end-of-life care. If that is to happen we need to respect people’s right to self-determination and champion the patient’s voice in all that we do.