Valid patient consent — The struggle to put patients in the driver’s seat of medical decision-making

In the era of advanced medical and surgical procedures, involving the patient in the decision-making process has become an ethical imperative. But modern health care systems should go one step further, according to patient rights advocates like Nadine Montgomery, who delivered the Sir Robert Macintosh Lecture titled Informed Consent: The Pursuers Perspective today, during the opening ceremony. Not only should the receivers of medical care understand their options, benefits, and risks associated with any proposed treatments, but the decisions regarding their care should ultimately rest with them.

Montgomery became an advocate for patients’ choice and informed consent after her son Sam was born with cerebral palsy in 1999, following a complicated delivery. “Although it was a very tragic story, it is one that I am always willing to share, if it will help in understanding the importance of patient choice and informed consent, or, as I prefer to call it, valid patient consent,” she said.

Montgomery, who has been living with type I diabetes since early childhood, explained that personal experience has taught her about the perils of withholding relevant information from patients. During a high-risk pregnancy in her early 20s, she had repeatedly expressed concerns about being able to have a safe vaginal delivery, given the large size of the fetus. Those concerns were never properly addressed, and her doctors did not discuss alternative options for delivery or potential complications. Labor was induced at 38 weeks and, after failure to progress, the medical team decided on a forceps-assisted delivery. The mother-to-be was asked to sign a consent form without truly understanding the proposed procedure or any potential complications that could arise during what is known as an instrumental delivery.

“I felt that I had not been given the information that I was entitled to, nor been allowed to be a partner in the decision-making process with regards to my care and the delivery of my child,” Montgomery explained. “It did not seem right that decisions were being made for me but without me.”

Decades later, Sam and his mother still live with the consequences of those decisions. After experiencing an obstetric complication known as shoulder dystocia, which occurs when the baby’s shoulders get caught above the mother’s pubic bone, Sam suffered hypoxic encephalopathy and head trauma. Shortly after birth, he was diagnosed with left-sided Erb’s palsy, a condition characterized by arm weakness and loss of motion that typically results from injuries sustained during delivery. At three months of age, he received a diagnosis of cerebral palsy. Sam’s condition translated into a lifelong struggle, with many physical and social challenges and the need for specialized care. Although the recent college graduate has overcome many obstacles, the cold hard fact is that his condition was preventable, his mother explained.

Montgomery’s medical team had withheld vital information about factors that increased her risk for shoulder dystocia, including type I diabetes, short maternal stature, fetal macrosomia, failure to progress, and instrumental delivery. Extensive research, with help from her sister, an anesthesiologist, revealed that Montgomery’s providers had fallen well below the standard of care in explaining the risks of her pregnancy and the options for delivery. “It was actually the specialty of anesthetics that played an important part in initiating this journey which led to the change in the UK law regarding consent,” Montgomery said.

After Scottish civil courts upheld the previous standards for informed consent, Montgomery took the fight all the way to the Supreme Court in London, leading to a 2015 landmark decision that codified the ethical and legal obligations of obtaining valid consent from patients. Patients’ ability to understand their options and their voluntary acceptance of the treatment plans now play a central part in consent guidelines across the United Kingdom. Montgomery’s efforts were not directed at placing blame, rather, she strived to understand the reasons behind her traumatic experience and to prevent other families from going through similar experiences. Upholding the previous, unfair practices prevented health care professionals from learning from their mistakes and improving patient care, the speaker said.

“Following the Supreme Court decision, valid patient consent is now essential for medical professions, thus protecting the rights of individual patients, leaving medical paternalism far behind,” Montgomery added. While medical paternalism is far from being extinct, this decision marks a significant step in the direction of supported decision-making. Montgomery’s voice has joined a chorus of initiatives across the United Kingdom and around the world that advocate for placing the patient at the center of the decision-making process. Unlike shared decision-making, supported decision-making assigns medical professionals the role of supporting their patients in making decisions regarding their own treatment, emphasizing patient autonomy.

“The rights of the patient now need to be heard and respected, with patients making their own informed decisions with the support of their doctor,” Montgomery concluded. “After all, it’s the patient, not the doctor, who has to live with the consequences of those decisions for the rest of their lives.”

Nadine Montgomery has a law degree and a Diploma in Professional Legal Practice from the University of Strathclyde, and a BSc in Molecular Biology from the University of Glasgow. While working as a trainee solicitor in clinical negligence, she also serves as an ambassador for multiple organizations that champion women’s autonomy and consent in childbirth and promote improved doctor-patient communication.

More details about her journey can be found in our pre-congress interview:

Nadine, can you please tell us a little bit about your journey and what led you to become an advocate for patient choice and informed consent?

Twenty-three years ago, my son Sam was born with Cerebral Palsy after a traumatic delivery. This experience compelled me to seek improvements in patient care. Throughout my pregnancy, I had expressed concerns about delivering a large baby, given my status as a person with type 1 diabetes. However, these concerns were dismissed, and I was never informed of the risks or given options for delivery. This lack of communication and involvement in the decision-making process had devastating consequences.

Can you please explain how you discovered the information that had been withheld from you?

After the events, I wanted to understand why this had happened. With the help of my sister and her husband, both anaesthetists, we researched medical guidelines and scientific papers. We discovered that as a person with type 1 diabetes, I had a significant risk of experiencing an obstetric emergency called shoulder dystocia. Shockingly, this information was never disclosed to me, despite my repeated inquiries. I realised that my care had fallen well below standard, and I was determined to prevent this from happening to others.

What steps did you take to bring about change and ensure that patients are properly informed?

I first visited my lawyer in 1999, and after a long and arduous journey through the courts, we reached the Supreme Court in London. The landmark ruling affirmed the importance of patient rights and the need for doctors and patients to make decisions together. The court emphasised the duty of doctors to ensure patients are aware of material risks and alternatives. This decision not only vindicated my case but also established ethical guidance on valid consent as a legal requirement for doctors.

How do you feel about the impact of the ruling on patient autonomy?

I am immensely grateful that the law now protects patients’ right to autonomy. While I never received a formal apology, the knowledge that the law has changed brings me comfort. It ensures that no one else will have to endure what I went through. This victory is not just mine; it is a victory for every patient in the UK. It signals a shift away from paternalistic medicine and towards a system that respects and values patient choice and informed consent.

As you address the audience at the ongoing Euroanaesthesia Congress, delivering the highly anticipated Sir Robert Macintosh Lecture titled “Informed Consent: The Pursuers Perspective,” could you kindly express your insights regarding the significance of this subject? Additionally, we would appreciate it if you could outline the key messages you intend to communicate to the attendees during your lecture.

To healthcare providers, I would emphasise the importance of open and honest communication with patients. Recognise that patients are partners in their own care and involve them in the decision-making process. Share information, discuss risks, and respect their autonomy. To patients, I urge you to ask questions, seek information, and be an active participant in your healthcare. Your voice matters, and you have the right to be fully informed and involved in decisions that will affect your life.

It is my hope that by raising awareness and promoting dialogue, we can create a healthcare system that truly prioritises the well-being and autonomy of patients.