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  • When healthcare harms – who cares?

    Summary

    Sidney Dekker says when there has been an incident of harm, we need to know "who is hurt, what do they need, and whose obligation is it to meet that need?"

    In this series of blogs commissioned by Patient Safety Learning, Joanne Hughes, hub topic lead, will develop our understanding of the needs of patients, families and staff when things go wrong and look at how these needs may be best met and by whom.  Using Joanne's expertise and informed by her personal experience and engagement with many others who have suffered second harm, this series of blogs seeks to clarify the care needs for harmed patients, their families and for staff when things go wrong. It aims to highlight the chasm between what is needed and what is currently delivered.

    As the blog series progresses, it will build up evidence and suggestions, inviting feedback from readers. The aim is to find a shared way forward that seeks to ensure that when things go wrong, and for as long as needed after, everyone’s needs are both recognised and, crucially, met to support and allow all those affected the chance to heal the best they can.

    Content

    “After he died, the little plastic ID band that was around his tiny wrist should have been slipped onto mine. There was nothing more that could have been done for him, but there was plenty that needed to be done for me. I needed an infusion of truth and compassion. And the nurses and doctors who took care of him, they needed it too." 
    Leilani Schweitzer[1]                                       

    When someone is hurt, it is reasonable to expect the healthcare system to provide care to alleviate symptoms or to cure. It is also reasonable to expect those providing the care to be adequately trained and supported to do so. Yet, when harm is caused by healthcare, the spectrum of harm suffered is not well understood, care needs are not fully recognised and, therefore, the care needed to facilitate optimum recovery is not being provided.[2]

    In fact, with outrageous frequency, at a time when exceptional care is so desperately needed, those hurting describe how they are further harmed from ‘uncaring’ careless and injurious responses.

    Healthcare harm is a ‘double whammy’ for patients

    Healthcare harm is a ‘double whammy’. There’s the primary harm itself – to the patient and/or to those left bereaved – but there is also the separate emotional harm caused specifically by being let down by the healthcare professionals/system in which trust had to be placed.[3] This additional emotional harm has been described as being the damage caused to the trust, confidence and hope of the patient and/or their family.[4]

    Trust – you rely on professionals to take responsibility for what you cannot do yourself.
    Confidence - you believe that the system will protect you from harm.
    Hope – you have the conviction that things will turn out well. 

    Anderson-Wallace and Shale[4]

    For the patient and family to be able to heal from healthcare harm, appropriate care must be provided not only for the primary injury and any fall out from this, but also this additional emotional injury (being let down by healthcare) and any fall out from that.

    For example, a parent who loses a child as a result of failures in care will need help to cope with the loss of their child and all of the processes that occur as a result. But they will also need support to cope with having had to hand over responsibility for their child’s safety to healthcare professionals, only to be let down, and all the feelings and processes associated with that. Much needs to happen to restore that parent’s trust, confidence and hope in our healthcare system and the staff within it. This is different to the parent of a child who has passed away from an incurable illness despite exemplary healthcare. A parent let down by healthcare has specific additional care and support needs that need to be met to help them cope and work towards recovery.

    Healthcare harm also causes emotional harm to the staff involved

    In 2000, Albert Wu introduced the phrase ‘second victim’ in an attempt to highlight the emotional effects for staff involved in a medical error and the need for emotional support to help their recovery.[5] The term has recently been criticised, since families should be considered the second victim,[6] and the word victim is believed “incompatible with the safety of patients and the accountability that patients and families expect from healthcare providers.[7] While the term itself may be antagonistic, or misrepresentative, the sentiment – that staff involved in incidents need support to cope with what has happened, and to give them the confidence to do what is needed to help the patient/family heal – certainly stands.

    When staff are involved in an incident of patient harm, they may lose trust in their own ability and the systems they work in to keep patients safe, and they may worry about their future.[5],[8] They need care and support in order to recover themselves and, crucially, so that they feel psychologically safe and are fully supported to be open and honest about what has happened. They need to feel able to do this without fearing personal detrimental consequences for being honest, such as unfair blame or a risk to their career. This is essential to the injured patient/family receiving the full and truthful explanations and apologies they need in order to regain trust, confidence and hope, and, ultimately, to heal as best they can.

    So, in addition to patients and families there should be a ‘care pathway’ for staff involved in incidents of harm.

    A google search on ‘second victim’ reveals a wealth of research on the emotional effects of medical error for staff involved and the best ways to provide support for this, and this is resulting in the emergence of staff support provision to aid recovery.[9] In contrast, very little research has been done into the emotional effects and support needs of families and patients.

    How is ‘care’ for emotional harm given?

    The ‘treatment’ of the emotional harm has been described as ‘making amends’ – by restoring trust, confidence and hope.[4]

    Once a patient has been harmed by healthcare, every interaction (physical, verbal or written) they have with healthcare after that will either serve to help them heal or to compound the emotional harm already suffered.

    Trew et al.[10] describe harm from healthcare as a “significant loss” and conclude that “coping after harm in healthcare is a form of grieving and coping with loss”. In their model, harmed patients and families proceed through a ‘trajectory of grief’ before reaching a state of normalisation. Some can move further into a deeper stage of grief and seemingly become stuck in what is referred to as complicated grief. They can display signs of psychiatric conditions "if there are substantial unresolved issues, or where there is unsupportive action on the part of individuals associated with the healthcare system and the harm experience”.

    At the point of the harmful event, the patient/family experiences losses, including a drop in psychological wellbeing. From this point on, healthcare staff and organisations have opportunities to respond. If the response is supportive it may be helpful for the patient/family in coping with the losses. If the response is not supportive, this may cause ‘second harm’ complicating the healing process, leaving the patient/family with unresolved questions, emotions, anger and trust issues. The patient’s psychological wellbeing and ability to return to normal functioning are severely affected.

     “Most healthcare organizations have proved, in the past at least, extraordinarily bad at dealing with injured patients, resorting at times, particularly during litigation, to deeply unpleasant tactics of delay and manipulation which seriously compounded the initial problems. My phrase ‘second trauma’ is not just a linguistic device, but an accurate description of what some patients experience.” Charles Vincent[11] 

    There is no shortage of individuals who have suffered extensive ‘second harm’ sharing their experiences in the hope this will lead to better experiences for others and some help for themselves to recover. Many are, wrongly, being ‘written off’ as historical cases that can no longer be looked at. This cannot be right – when these people are suffering and need appropriate responses to heal their wounds.

    The extent of suffering that exists now, in people who have been affected by both primary trauma and then second harm from uncaring defensive responses, or responses that have not taken into account the information patients and families themselves have, or relevant questions they ask, is no doubt nothing short of scandalous.

    There is a pressing urgency for the NHS to stop causing secondary trauma to affected patients and families.

    ‘Patient safety’ has to start applying to the harmed patient and their family members’ safety after an adverse event, and not just focus on preventing a repeat of the event in the future. Yes, future occurrences must be prevented, learning is crucial, but so is holistically ‘looking after’ all those affected by this incident. If they are not looked after, their safety is at risk as their ability to heal is severely compromised; in fact they are in danger of further psychological trauma.

    These same principles apply to affected staff.

    Avoiding second harm: what happens now and what is needed?

    This series of blogs will highlight that every interaction a harmed patient or family member has with staff in healthcare organisations (not just clinical staff) after a safety incident should be considered as ‘delivery of care’. With this view, the ‘care interaction’ should be carried out by someone trained and skilled and supported to do so, with the genuine intention of meeting the patient/families’ needs and aiding the patient/family to recover and heal (restore trust, hope and confidence). The interaction / response must not cause further harm. Stress or suffering, and the content of the interaction, for example a letter, should not have been compromised, as often occurs, by competing priorities of the organisation to the detriment of the patient/family.

    Thus, these blogs will look at:

    • The processes that occur after an incident of harm (Duty of Candour, incident investigation, complaint, inquest) with the aforementioned focus.
    • The care the patient and family need and the obligation (that ought to exist) to meet that need.
    • Processes that are core to the package of ‘care’ to be provided to the harmed or bereaved and to be delivered by skilled and supported ‘care providers’. 

    The blog series will seek to show that meaningful patient engagement in all of these processes is crucial for restoring trust, confidence and hope; therefore, aiding healing of all groups in the aftermath of harm.

    “It is important to respect and support the active involvement of patients and their families in seeking explanations and deciding how best they can be helped. Indeed at a time which is often characterised by a breakdown of trust between clinician and patient, the principle of actively involving patients and families becomes even more important.” Vincent and Coulter, 2002[3]                             

    It will also consider the additional care and support needs that might need to be met alongside these processes in a holistic package of care, such as peer support, specialist medical harm psychological support and good quality specialist advice and advocacy. It will describe what is currently available and what more is needed if healthcare is to provide adequate care for those affected by medical error in order to give them the best chance of recovery.

    Alongside this, the needs of the staff involved will also be considered.

    We welcome opinion and comments from patients, relatives, staff, researchers and patient safety experts on what should be considered when designing three harmed patient care pathways: for patients, families and staff. What is the right approach? What actions should be taken? How can these actions be implemented? What more needs to be done?

    Join in the discussion and give us your feedback so we can inform the work to design a harmed patient care pathway that, when implemented, will reduce the extra suffering currently (and avoidably) experienced by so many.

    Comment on this blog below, email us your feedback or start a conversation in the Community.

    References

    1.   Leilani Schweitzer. Transparency, compassion, and truth in medical errors. TEDxUniversityofNevada. 12 Feb 2013.

    2. Bell SK, Etchegaray JM, Gaufberg E, et al. A multi-stakeholder consensus-driven research agenda for better understanding and supporting the emotional impact of harmful events on patients and families. J Comm J Qual Patient Saf 2018;44(7):424-435.

    3.   Vincent CA, Coulter A. Patient safety: what about the patient? BMJ Qual Saf 2002;11(1):76-80. 

    4.   Anderson-Wallace M, Shale S. Restoring trust: What is ‘quality’ in the aftermath of healthcare harm? Clin Risk 2014;20(1-2):16-18.

    5.   Wu AW. Medical error: the second victim: The doctor who makes the mistake needs help too. BMJ 2000;320(7237):726-727. 

    6.   Shorrock S. The real second victims. Humanistic Systems website.

    7.  Clarkson M, Haskell H, Hemmelgarn C, Skolnik PJ. Editorial: Abandon the term “second victim”. BMJ 2019; 364:l1233.

    8.   Scott SD, Hirschinger LE, Cox KR, McCoig M, Brandt J, Hall LW. The natural history of recovery for the healthcare provider “second victim” after adverse patient events. Qual Saf Health Care 2009;18(5):325-330.

    9.   Second victim support for managers website. Yorkshire Quality and Safety Research Group and the Improvement Academy.

    10. Trew M, Nettleton S, Flemons W. Harm to Healing – Partnering with Patients Who Have Been Harmed. Canadian Patient Safety Institute 2012.

    11. Vincent C. Patient Safety. Second Edition. BMJ Books 2010.

    About the Author

    Joanne’s daughter Jasmine died in 2011 following failures in her care. Soon after Joanne set up Mother’s Instinct with the ambition to provide a source of support specifically for families whose children die following medical error, and a platform to share their stories and experiences for learning to improve patient safety for children, patient engagement in patient safety, and care of avoidably bereaved parents.

    Since setting up Mothers Instinct, Joanne has partnered on various patient safety projects, in research, and has been a member of committees and working groups related to the aims of Mothers Instinct.

    Joanne is passionate that patient engagement is key to patient safety improvement – during care to avoid error, after serious incidents occur to ensure optimum learning and appropriate care of those affected by the incident, and as part of the safety infrastructure of healthcare settings.

    Joanne speaks regularly on these topics, and her experiences, at both National and Local Patient Safety Events.

    3 reactions so far

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    What a fantastic summary of the issues - and highlighting that harmed individuals and families need attention - and reminding us that it is not only about learning and improving care for the future - I'm currently co-leading a study called DISCERN looking at how improvements can be make in NHS maternity care in disclosure and discussion with women and families after a harmful event - I am so interested in the development of a harmed care pathway for women and families - how this can be designed, who delivers/provides this, how this is shaped to changing needs of people over time - it would be great to have a longer conversation about this!!! thanks for this great piece Joanne!  fantastic!! Mary 

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    Really interesting article and one that resonates deeply with me.  Before I continue I’d like to say my heart goes out to all who have lost love ones, so tragic and I’m so sorry.

    i had catastrophic surgical complications which left me unable to eat or drink ( I was vein fed for months but I can now eat ), spent months in hospital, suffered respiratory failure and sepsis.  Five years on im still broken physically and mentally ( I have a very complex abdominal fistula, a sight threatening eye condition which is linked to the bowel problem  and PTSD, depression and anxiety.  When it happened it was somehow normalised and I was made to feel I should be grateful to be alive not sad my health had been so severely compromised.  I never pursued it as I was too traumatised. I suppose there are two types of harm, where someone is to blame or when it’s ‘one of those things’.  I was even told ‘ well you signed the consent form’ ( not by my consultant who is very kind).  It’s been hell on Earth and still is yet there is no help. I’m now so traumatised about going back into hospital , I keep putting a much needed procedure off. 
    I think things will get worse for people like me after Covid as there will be a lot of traumatised people out there.   I am told ‘oh what happened to you is very rare’ ( so it doesn’t count ), to which I sometimes say ‘it’s only rare until it happens to you’.  
    sorry if my comment isn’t appropriate, I can't imagine how it feels to lose someone through harm and don’t pretend to.  I have lost myself though in all of this and my husband has lost his wife.  I feel invisible and irrelevant. 

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    MaryAdams thank you for your feedback. I'm glad that you found the content useful. I will be expanding further on the needs of harmed patients and families and how we meet them in this blog series over time. With 3 small children at home and no childcare opportunity since the end of March progress has been stalled, but it is in the pipeline! I'd be very delighted to have a chat with you about your work and my views on how we treat harmed patients better, ...and as discussion/development for pathways unfolds do make sure you are a part! Jo

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    Blodwen, I am so sorry to hear of your suffering and some of the appalling things that have been said to you. To be harmed by healthcare is a 'trauma' that is not properly understood (except for those of us that are suffering from it) , and in particular differentiating this trauma from the physical injury or loss suffered. It's obvious to us the help we should receive and that the worst thing is abandonment, and dismissal. What happened to anyone harmed by healthcare one would hope would be 'rare' so that's certainly no excuse is it?? Your comments are not irrelevant and are welcomed. Have you had any support at all? I am aware of two counsellors who specialise in this kind of trauma, they themselves have suffered which is helpful. https://www.maureeninsight-services.co.ukhttps://burnbankcounsellin.wixsite.com/burnbank-counselling. Sending strength x

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    Hi Joanne,
    Thank you for your comment.
    It’s a very long story but in answer to your question, no I haven't had support specific to what happened.  The operation was carried out in a private hospital 100 miles from where I lived.  When it was evident my bowel had perforated,  I was transferred to a NHS hospital under same consultant where I remained for three months being being vein fed.  It was recommended I have counselling on my discharge but there was a mix up and in all honesty I was too traumatised to chase things up .  Plus I was told my condition was temporary and I would heal so I spent two years sat on my bed afraid to move as every time I did faecal matter spilled out of places it shouldn’t.  The much awaited repair in 2017 resulted in respiratory failure and sepsis.  Three years on I’m still unwell and the condition I have ( Enterocutaneous fistula ) I truly believe is killing me but no one can do anything as they know more surgery probably will kill me more quickly than the fistula itself.
    I have had some systemic counselling as my husband and I are also falling apart.  I think the psychologist can see I need more help as I’m just not coping but where I’m from help is just not available, especially now with Covid.  I’m very alone with this as is I suspect most people who have suffered harm as there is nothing out there.
    I will check out the links you kindly included
    thank you 
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