There is something horrifying about being harmed, or indeed causing harm, in an environment of care and trust. Both for patients and staff, safety is the emotional heart of healthcare quality
Charles Vincent
I have written and spoken before about healthcare harm being a ‘double whammy’ for patients and families – the physical injury or bereavement itself, and the emotional injury – the ‘horror’ ..the shock and disbelief that this could have happened..the loss of trust and confidence in the healthcare system and it’s staff to ensure you come to no preventable harm whilst in their care.
The emotional & psychological impacts suffered by those affected by patient safety incidents can be a severe injury with wide ranging short and long term consequences for patients i ii including loss of trust and confidence iii in healthcare, neglect, isolation, fear, anger, despair, guilt,iv trauma, depression and anxiety, which may all get worse if left ‘untreated’
Clinical and non-clinical staff, and organisational actions will influence the short and long term outcomes for these emotionally injured people v – so providing the right care and treatment for emotional and psychological harm in a safe, compassionate and patient centred way is essential for their safety and prognosis.
Providing the care they need to aid recovery from the emotional & psychological harm, and being careful not to cause more of it, might better enable the patient / families natural trajectory of recovery from the physical injury or bereavement they have suffered, and could help them to cope. Failing to help the emotional harm or worsening it, might interfere with this natural trajectory and inhibit ability to recover and cope. For example, the grieving process can be stalled, or develop into ‘complicated grief’ where it may not have done.vi
It is thus essential to their ‘safety’ (ability to cope and recover from all their injury as best they can) that harmed patients and families receive the care they need, in the way they need it to be delivered. Patients / families harmed by healthcare should expect nothing less than absolute dedication to care provider actions and behaviours that help them recover as best is possible from an avoidable incident.
With this perspective it is unspeakable that while effort may be put into the safety of future patients after an incident of harm, the care needed to enable the recovery (hence safety) of those affected by this incident remains mostly inaccessible, and frequently actively denied to them. Healthcare systems need to act in equal measures to both enable the recovery of patients and families it has harmed, and to protect future patients.
Healthcare organisations exist, to provide care to make sick or injured people better and/or minimise their pain and suffering. This is the purpose of healthcare. For the majority, it is not just a job but a vocation
Yet providing what is set out in the Duty of Candour to harmed patients has not been framed asproviding care to make sick or injured people better and/or minimise their pain and suffering,
The Duty of Candour Legislation (Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Regulation 20)vii reads as follows;
- Registered persons must act in an open and transparent way with relevant persons in relation to care and treatment provided to service users in carrying on a regulated activity.
- As soon as reasonably practicable after becoming aware that a notifiable safety incident has occurred a registered person must—
- notify the relevant person that the incident has occurred in accordance with paragraph (3), and
- provide reasonable support to the relevant person in relation to the incident, including when giving such notification.
- The notification to be given under paragraph (2)(a) must—
- be given in person by one or more representatives of the registered person,
- provide an account, which to the best of the registered person’s knowledge is true, of all the facts the registered person knows about the incident as at the date of the notification,
- advise the relevant person what further enquiries into the incident the registered person believes are appropriate,
- include an apology, and
- be recorded in a written record which is kept securely by the registered person.
In the CQC Duty of Candour guidance documentviii, next to ‘reasonable support’ it suggests that “Providers must give the relevant person all reasonable support necessary to help overcome the physical, psychological and emotional impact of the incident.”
I think provider behaviours to date suggest that they often only recognise an obligation to help patients overcome any physical impact of harm events. What if that sentence in the guidance was moved and placed firmly at the top of the Duty of Candour regulation? If not literally, then at least in all of our hearts and minds. With this reframing, the harmed patient is seen as the whole person, and disclosure as a core element of the care necessary for their recovery, not something that is separate to it.
Providers must give the relevant person all reasonable support necessary to help overcome the physical, psychological and emotional impact of the incident. This includes:
- Registered persons must act in an open and transparent way with relevant persons in relation to care and treatment provided to service users in carrying on a regulated activity.
- As soon as reasonably practicable after becoming aware that a notifiable safety incident has occurred a registered person must—
- notify the relevant person that the incident has occurred in accordance with paragraph (3), and
- provide reasonable support to the relevant person in relation to the incident, including when giving such notification.
- The notification to be given under paragraph (2)(a) must—
- be given in person by one or more representatives of the registered person,
- provide an account, which to the best of the registered person’s knowledge is true, of all the facts the registered person knows about the incident as at the date of the notification,
- advise the relevant person what further enquiries into the incident the registered person believes are appropriate,
- include an apology, and
- be recorded in a written record which is kept securely by the registered person.
Healthcare organisations exist, and staff go to work every day to provide care that enables recovery and minimises pain and suffering. They must do that for the patients that they unintentionally harm by getting disclosure right every time, and supporting access to (not necessarily providing) specialist healthcare harm support. (The wider system and commissioners have a large role to play here too).
Could reframing the Duty of Candour and revealing that disclosure is a necessary part of care provision, help healthcare staff and organisations more readily put the harmed patients /families interests before their own?
Could it help commitment to provide the information (care) to harmed patients, even if doing so is difficult, or traumatic, for staff?
Could it help commitment to minimise the trauma staff experience and provide support for their wellbeing, so they can provide what the harmed patient needs from them?
Could it spur as much research interest in understanding harmed patient needs and providing for them, as there has been for understanding and providing for the needs of staff involved in incidents?
Could it make it obvious that providing or accepting advice, in any form, to withhold what the harmed patient / family needs is so obviously against everything healthcare exists for?
Could it help us get to a point where interfering with, withholding information, or pressuring others to do so in the aftermath of harm, is recognised as the ‘reckless behaviour’ that it is, and always responded to with the severest sanctions?
Could it call into question the current involvement and ‘advice seeking’ of legal teams in the aftermath of harm?
Could it help commissioners and regulators take the safe fulfilment of Duty of Candour as seriously as the safe provision of clinical care?
Could it help ensure that training for Duty of Candour is so much more than knowing what it says and what is expected ?
Could it help to stop harmed patients from being ‘notified’, ‘processed’ or ‘dealt with’’ and instead make sure they are ‘cared for’ ?
Could it help the move toward relational approaches to disclosure, designed to pave the way for restoration of trust and confidence as processes progress?ix
Could it help spur enthusiasm, and urgency for understanding and providing for the full package of care needed for emotional and psychological recovery, so that those parts perhaps best provided independently to where the harm occurred, such as a fully funded and resourced programme of quality peer support, specialist psychological support, and access to high quality information and advocacy?
I hope so. The time has to be up for this system wide failure to support the recovery of harmed patients and families. There is not enough shame around the numbers of harmed patients there are who have been abandoned. Our NHS must remember its purpose: to provide safe good quality care to all to minimise suffering and aid recovery….. it can’t go on denying this care to people it harms.
Joanne Hughes
16.10.2020
i Bell, S.K., Etchegaray, J.M., Gaufberg, E., Lowe, E., Ottosen, M.J., Sands, K.E., Lee, B.S., Thomas, E.J., Van Niel, M. and Kenney, L., 2018. A multi-stakeholder consensus-driven research agenda for better understanding and supporting the emotional impact of harmful events on patients and families. The Joint Commission Journal on Quality and Patient Safety, 44(7), pp.424-435.
ii Ottosen, M.J., Sedlock, E.W., Aigbe, A.O., Bell, S.K., Gallagher, T.H. and Thomas, E.J., 2018. Long-term impacts faced by patients and families after harmful healthcare events. Journal of patient safety.
iii Anderson-Wallace, M. and Shale, S., 2014. Restoring trust: What is ‘quality’ in the aftermath of healthcare harm?. Clinical Risk, 20(1-2), pp.16-18.
iv Delbanco, T. and Bell, S.K., 2007. Guilty, afraid, and alone—struggling with medical error. New England Journal of Medicine, 357(17), pp.1682-1683.
v Trew, M., Nettleton, S. and Flemons, W., 2013. Harm to Healing: Partnering with Patients who Have Been Harmed. Canadian Patient Safety Institute.
vi Prigerson, H.G., Maciejewski, P.K., Reynolds III, C.F., Bierhals, A.J., Newsom, J.T., Fasiczka, A., Frank, E., Doman, J. and Miller, M., 1995. Inventory of Complicated Grief: a scale to measure maladaptive symptoms of loss. Psychiatry research, 59(1-2), pp.65-79.
vii https://www.cqc.org.uk/guidance-providers/regulations-enforcement/regulation-20-duty-candour#full-regulation
viii https://www.cqc.org.uk/guidance-providers/regulations-enforcement/regulation-20-duty-candour#guidance
ix Moore, J. and Mello, M.M., 2017. Improving reconciliation following medical injury: a qualitative study of responses to patient safety incidents in New Zealand. BMJ Quality & Safety, 26(10), pp.788-798.