Toespraken bij presentatie boek Adrienne Cullen Deny, dismiss, dehumanise: what happened when I went to hospital

Dr Jean van Sinderen-Law: public relations University of Cork

Dr Volkert Wreesmann: ENT medical consultant Portsmouth, UK , formerly UMCU, zie hieronder

Sophie Hankes LLM: chair foundation SIN-NL and IEU-Alliance

Just a short word, as patient safety advocate on behalf of the foundation SIN-NL.
My name is Sophie Hankes, lawyer and founder of SIN-NL.
My condoleances again to you Peter husband of Adrienne, family and friends.
 We met a few times. Adrienne was a very kind and special woman.

Compliments to editor van Brug, Mr Jan Willem Gerth
.
The book shows Adrienne Cullen as a strong patientsafety advocate exposing the deny delay dismiss culture of hospitals and doctors.
Adrienne followed in our footsteps in her own respectful and persistent way and with her own priorities ao the banning of the gagging clause.

SIN-NL has been publishing for years and years about the horrible position of victims of medical errors due to the refusal of information and remedial care to in spite of the ethical, professional and legal duty of care of doctors.

Compliments to dr Wreesmann, who choose to be a whistleblower to protect patients from the UMCU. Your lecture was impressive and interesting.
May I add that there have been important developments on Open Disclosure and I offer you the Protocol Tell and Repair, signed by the Inspectorate of Healthcare 2007, based on a report from 2006 16 Harvard Hospital When Things Go Wrong.
This has undoubtedly been the basis for the Law Kwaliteit, Klachten, Geschillen Zorg 2016 which states explicitly that doctors are obliged to inform victims of medical errors about the error and to offer follow up medical care. Experience still shows enormous reluctance of doctors ……
As we learnt from Adrienne Cullen s suffering cuased by the UMCU, doctors need to focus on the interests of victims of medical errors and give empathy and care. This presents a win-win situation maintaining the doctor-patient relationship.
As indicated before doctors usually refuse info, remedial medical care for fear of accountability, thus financial compensation is a rare exception.
One personal example out of thousands of harmed patients.
After an implant at my brainstem in 2000, experimental without informed consent, I became almost fully physically disabled.
I receive:
a disability allowance,
home care allowance,
allowance for an electric wheelchair,
allowance for a regular wheelchair:
thousands of euros almost for 19 years!
But Dutch neurologist dr K and Dutch doctors as well as judges deny the consequences of the experimental neurosurgery without consent which result from the implant by worldrenowned neurosurgeons, a space occupying process compressing the brainstem and blocking the perfusion in the right vertebral artery.
I am not the only victim of medical errors which is totally ignored by doctors, there are thousands and thousands of victims!

I call upon all present to focus on the improvement of Patient Safety, to make this our common goal, in order to prevent unnecessary harm and loss of precious human lives.
Adrienne, may you rest in peace.

Dr. Jean van Sinderen-Law Associate Vice President, Director of European Relations and Public Affairs,
University College Cork, Ireland.

On the occasion of the launch of Deny, Dismiss, De-humanise – by Dr Adrienne Cullen.

Amsterdam, March 2019.

Goede middag dames en heren. Het is mijn absolut genoegen en voorrecht om u vanmiddag te word te staan.

A Dhaoine Uaisle, ba mhaith liom cead mile fáilte a chur roimhe uilig um thrathnona. Is mór an onóir domsa bheith anseo inniu.

Distinguished guests, ladies and gentlemen. My name is Jean van Sinderen-Law, Associate Vice President, University College Cork, Ireland, I am truly honoured and deeply humbled to officiate on this very special occasion.

Ireland and her people have had an impact on modern civilisation from the fourth century to the present day which is vastly disproportionate to its size and population.  This impact continues to resonate at global level not just in the business, literary and musical worlds, but in areas such as conflict resolution, economic revival, human rights and indeed wherever intellectual discourse is heard.

For as long as the Irish have been distinct as a race, emigration and separation have been part of our  experience. It is of note that today fewer than 7M people live on the island of Ireland but approximately 73M throughout the world describe themselves as Irish.

A preoccupation with identity has been central to that experience.  The Irish, native and descended, consistently have asked a number of questions of ourselves over the centuries:  What are our distinguishing characteristics as a people? What does it mean to be Irish? Why do I call myself Irish?  And what is it that as Irish men and women we can impart to our children so that they too can understand and subscribe to Irish identity?

Today we celebrate an Irish woman, a woman who took pride in her identity and in the foot steps of many of her forefathers and mothers, she took a stance. Dr Adrienne Cullen, born in Ireland, died in the Netherlands, lived her life to the very end subscribing to what the great Philosopher Aristotle said “Know thyself” and she lived her life to those values, values deep rooted within her as an Irish woman, an immigrant in this country.

Her values were those of Empathy, compassion, honesty, to question, respect, courage, forgiveness all governed by a resilience and a tenacity to ensure that right is done.

As an immigrant she was challenged with cultural differences, language differences and most of all lack of family support and contacts. That is a very testing environment in which to find oneself when healthy, not to mind when ill. She did not know anyone, had no connections, apart from Peter she was alone.

This is a story of a woman, an Irish woman who took on a system which had failed her in a foreign country with courage and tenacity but which as a result of her life will hopefully not fail others. Adrienne was an educated woman, a questioning woman, a worldly woman, a woman. As a woman myself  I believe her vulnerability was amplified because her illness was cancer of the cervix, the very core of her femininity. All the while she was battling cancer and dealing with surgery and treatment she was courageously writing this book, she had to write it, it was her experience. It was her outsiders view of the Dutch system. It was her experience of illness as she presented with a disease to be addressed by a system run by humans and governed by rules. Humans can make mistakes and flaws can be unintentional or deliberate.

As a result of her work lessons of far reaching significance have been learned, Adrienne’s life has made a difference.

As alumni of the same University, a university with a tradition of independent thinking., Adrienne and I walked the same corridors, ate in the same restaurants, shared the same history and were always encouraged to speak up. Our voices, our female voices mattered. I met Adrienne just once when she received her honorary doctorate at UCC in December 2018 just three weeks before she died, that day we welcomed her home, home to the place which had given her an education, preparing her to be world ready and work ready, which has helped instill in her the values of knowing herself and taught her about those who has gone before her who had made a difference in this world and provided her with an education which was as it is for all students a ticket to freedom, her ticket to the world.

It was also there that she met fellow UCC alumnus Peter and began a relationship, a friendship, partnership which no one could ever have predicted would take this unique route…At this juncture I want to pay tribute to Peter for his unstinting support and love of his Adrienne, in sickness and in health until death do us part…. Their journey has also been exceptionally difficult on him – we salute you Peter.

We know of Adrienne’s story because she told that story. Today we launch her book, Deny, Dismiss, Dehumanise – A complicated uncompromising description of what happened to her. Through her creativity and her ability to write, we now have insight to her journey, her life and a far deeper understanding of cervical cancer and of all this book has revealed in terms of systems and courage and lack of it. She told her story, her struggle for the truth and justice and for open disclosure on system failings to ensure that what happened to her will not happen to another.

She had the courage to speak her mind even if her voice shook and to act on behalf of others who lack the courage and ability to speak out.

In medical schools we teach diagnosis, prognosis etc, but we don’t teach the experience of illness. What is encompassed between the covers of this book is the experience of illness, the people involved, the lives it affects, the pain, the suffering, the fears, the uncertainties. Adrienne said that she is just “one small voice. What I’d like to do is blow away the silence that surrounds the patient experience and get us all discussing medical harm and its consequences openly. I’m hoping my book will do that.’’

When looking back, we tend to impose super-human status to those who stood up for their beliefs.

For some of them, the decision to act was conscious defiance of the status quo. For others, they were simply in the right place at the wrong time and found themselves acting on behalf of others lacking the courage to speak out. Fear and courage are sisters. Courage is about doing what you are afraid to do. Courage does not always roar, it moves silently but steadily. Many people show courage in reacting, few show true courage in acting.  We should rightly remember these people. But we should also remember that they were (or are) ordinary human beings, who made a choice.  And just like them, the rest of us have the opportunity to choose to engage in creating a better world.

Adrienne’s name will be as familiar to our descendants as the names of Rosa Parks, Malala Yousafzai, Nadia Murad, Jodi Kantor Meghan Twomey, Vicki Phelan, Stephanie Sinclair, Marie Curie, Emily Pankhurst, Grace O Malley, Maria Edgeworth,  Hannah Sheehy Skeffington, Rose Hackett, Helena Moloney, Countess Markievicz, Dr Kathleen Lynn, Mary Robinson to name but a few…

Fearless, inspirational women.

What is done cannot be undone, but one can prevent it happening again Anne Frank wrote in her diary while trapped in Amsterdam during the German occupation of the NL during WW2. I know what I want, I have a goal, an opinion. Let me be myself and then I am satisfied. I know that I am a woman, a woman with inward strength and plenty of courage. I believe it is fitting to imagine that those words could also be the words of Adrienne if she were standing here. She can’t stand here for reasons known to all of us, so as her sister, a fellow Irish woman, I feel strongly that the words of Anne Frank, a German woman living in this country are sounding today but today they are expressed through me from my sisters, Anne and Adrienne who have left extraordinary legacies.

“Bad men need nothing more to compass their ends, than that good men should look on and do nothing.”


Volkert B. Wreesmann MD PhD Head and Neck Surgeon

Portsmouth Hampshire UK

DENY, DISMISS, DEHUMANIZE

What happened when I went to Hospital

Adrienne Cullen

BOOK REVIEW

An Irish national, expatriate Adrienne Cullen works in Amsterdam when disaster strikes: a medical test report which indicates early cervix cancer gets lost in a Dutch University Hospital. Two years later the report accidently resurfaces and she is diagnosed with late stage disease, which soon proves to be incurable.

Shocked and devastated, Adrienne embarks upon a journey to determine what happened. Although she expects to be met with empathy and support, she instead encounters bureaucracy and indifference. She soon discovers that her doctor has been disqualified from counselling her, while still in charge of her treatment; a treatment that she is not allowed to choose herself. Instead, her case is referred to the legal department where it is quarantined, while legally-mandated notification of the Healthcare Inspectorate is not performed.

When Adrienne submits a report from an independent medical expert which confirms medical negligence, the hospital can no longer deny responsibility. However, prospects of adequate compensation remain limited by Dutch Law, which discourages immaterial reparations and favours out-of-court settlements over objective evaluation by a judge.
What follows is a 2-year ordeal in which her privacy is meticulously dissected by a hospital-appointed loss-adjuster, in order to determine her material damage. Her dignity is further jeopardized by lack of personal attention or apology from the hospital leadership, their refusal to perform a root-cause analysis, and their demand for her signing a gagging clause before any financial compensation is considered.
Pushed to her ultimate limits, she is driven to go public and involve a newspaper in her case.
One day after a TV program airs an unrelated story about patient and employee safety issues at the hospital, a limited compensation is finally agreed upon. Adrienne passes away 3 years later, in the presence of her caring husband, free of resentment towards her doctors, whose evolving support has led her to forgive them. Root-cause analysis results remain pending however.

Adrienne’s’ desolate struggle for justice is illuminated by an array of adversaries she meets and beats along the way; each Pharisees in their own right:
a hospital CEO who is happy to accept his elevation into Royal Knighthood, while disembarking the hospital in a storm after an incident-ridden tenure,
his successor who publicly markets herself as a supporter of transparency, while allowing pressure for a gagging clause behind the scenes,
a Dutch senator and professor who lectures ethics to medical students at Adrienne’s’ hospital, but is uninterested to help resolve Adrienne’s ethical issues with the hospital leadership,
and Health Inspectorate officials who are happy to accept that their surveillance of hospital bosses is based upon trust, but are suspicious when quality of care is questioned by patients or doctors.

It is not so much the choices that these individuals make, but the stark contrast offered by the kind and caring support of many others which really sets the stage for Adrienne’s relentless conquest. The “coming of age” of her gynaecologist and his departmental chief, who manage to break free from their superiors and choose Adrienne’s side, is an exemplary story of forgiveness and redemption in this regard, and it demonstrates the importance for doctors and patients to stick together after medical incidents.

The reliability of Adrienne’s experience is independently confirmed by multiple whistle-blowers and journalists who revealed an array of seemingly avoidable medical incidents at the hospital. These incidents are attributed to a suboptimal hospital culture marked by fear, distrust, repression, and disengagement among employees.
A recent Health Inspectorate investigation suggests that this atmosphere reflects a compensatory reaction to a lack of direction and control perceived by employees.
Primary hallmarks of inadequate organisation include a vertically-oriented top-down command structure and resultant quenching of vital informational exchange within the bureaucracy of its multiple middle-management layers, marginalization of employee assistance and participation programs, and insufficient surveillance by internal and external regulatory bodies.
It is these issues that fuel insufficient communication within the hospital and caused Adrienne’s demise, rather than the short-sighted belief held by some hospital officials that the incident merely related to a transition from paper to electronic medical files.

For these reasons, I would argue that this book is not just another story of good people versus bad people. Rather, it documents how well-intentioned people can make the wrong choices when part of a defective organisation. It is this realization that may provide us with an opportunity to improve the system and prevent future cases like Adrienne’s.
It seems that the common denominator of the problems in Adrienne’s hospital is an organisational focus upon centralization of power rather than a more democratically arranged, decentralized governance structure.
Although the former may seem more efficient, the question is whether it is an optimal choice in the healthcare setting as it not only tends to increase the power difference between hospital employees and their superiors, but also between patients and their health care providers.
These consequences may fuel suboptimal healthcare outcomes due to employee disengagement and reduced patient autonomy respectively.
This is well illustrated by Adrienne’s experience, and the lack of regard she suffered in the hospital. Not only was she not informed that biopsy tissue had been removed from her body without her consent, but the remainder of her journey was marked by a general disregard for her autonomy.
A pertinent example includes the pressure she received to sign a gagging clause, a clear human rights violation of her constitutionally granted Freedom of Speech rights.
Patient-centred policies such as “Duty of Candour” and “Open Disclosure”, which are widely accepted in the USA and UK, were surprisingly non-existent in The Netherlands before Adrienne addressed these.
Such guidelines are meant to provide an ethical and legal requirement for healthcare providers to be open and honest when something goes wrong, with the aims to maintain patient autonomy. Being well informed avoids occurrence of “second harm”, which includes the secondary psychological harm that affects patients affected by medical incidents when their grief is dismissed.
The absence of such policies in the Netherlands, suggests that patient autonomy problems are likely not limited to Adrienne’s hospital alone. In fact, not only Adrienne’s experience in other hospitals, but a range of media publications over the last few years suggest that these problems are widespread, and may be resolved through decentralization of authority.
For this reason, I think this book may serve as an important warning to patients, physicians, hospitals leaders, regulatory authorities and politicians.
In a time in which western societies are increasingly affected by political choices that favour centralization of power at the expense of rights and liberties of its individual citizens, Adrienne’s Orwellian struggle is a clear example of the grave consequences such policies may inflict.

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