A Case Study in Patients, Patience and Bioethics, all you Have to do is Change

Last week I enjoyed a bike ride through France with a fabulous group of people. In the group we had a nurse who referred to herself as the princess, and her husband, an entrepreneur who left home at sixteen to travel the world and went on to build a successful business. There was also a lawyer and, lastly, a singer who went from opera to performing on Broadway; she entertained us with songs on our last evening.

Today’s topics:

– When you are in the right environment, magic is possible
– How your approach can influence the outcome
– A case study in patients, patience and bioethics
– All you have to do is change

When you are in the Right Environment, Magic is Possible

Something we are not taught at school is that, while getting good grades and working hard are essential to success in our jobs, getting on with other people and the environment we are in, are also very important factors.

Last week I visited a monastery. The chapel is famed for its great acoustics. Visitors are encouraged to whisper to each other to experience how well sound travels. Finding myself alone, I started to sing. I used to take singing lessons; I have been told I have a beautiful singing voice and it is something that I enjoy, but I do it rarely. And as I sang in that chapel, I did not want to stop. The way my voice sounded in the room, clean and pure, clearer than I have ever experienced it, made me want to stay and sing. To experiment with different melodies, to marvel, at how even the softest notes filled the entire room.

Working with the right team and in the right environment can bring out the best in us. Naturally we need to work on ourselves too, in order to bring the best of ourselves to our work, in the same way a voice needs to be trained in order to perform at its best, but the combination of our best effort and the right environment can lead to incredible results.

How your Approach can Influence the Outcome

A few years ago, I renovated my flat and had a new floor installed. I had my doubts about the result of the work, but the company foreman assured me that it had been fitted well. I reached out to the owner of the company. He came to my house, had a look at my floor and said, “I am terribly sorry, we have done substandard work for you, please accept my apologies.” Later that night he called and said, “I have discussed the situation with my partners. We have agreed that we will redo all your floors for you. Whenever it suits you, just tell us when you want us to start.”

On my bicycle ride through Cognac and Normandy I met an American litigation lawyer who focuses on the construction industry. I told him my story. His response? “No, that is impossible, that never happens.”

Often our expectations of a situation impact the outcome. Going into situations expecting a no, influences how we communicate, which in turn influences the reaction we are likely to receive. There is a German saying: the way you shout into the forest, dictates the echo you will hear.

A Case Study in Patients, Patience and Bioethics

I once gave bioethics training to a group of senior medical affairs leaders from emerging markets.

I presented a case study with the blessing of a close family member, who had been enrolled in a clinical trial at a Swiss university hospital.

The trial protocol required quarterly bone marrow biopsies. Two years into the trial, a friend who is a practicing oncologist, told me that PCR is the method of choice to monitor CML, not regular bone marrow biopsies. I called the hospital to ask why they hadn’t adapted the protocol. They said, “You are correct, however we like to have access to the data and the cells, so we didn’t amend it.” It took another few years for them to amend the protocol. My relative decided to remain in the trial despite this, because he had grown to trust the team who was managing his treatment. Years later my family member was informed by phone, “Your CML has progressed, please double the dose of your medicine starting from tomorrow.” When I called the hospital asking to speak to the physician in charge of the clinical trial, I was told there wasn’t one. When someone called me back, they started the conversation with: “So you are the difficult family member? Well, I have some good news, your relative’s CML has not progressed. Please inform them they don’t need to change the dose.” Years later, when progression finally did occur, my relative informed me that a bone marrow biopsy was not planned. I called the hospital again and was told: “We thought a biopsy would be tough for an older patient to tolerate.” I asked if they had discussed it with my relative, they said, no. So, the decision was taken without discussing the pros and cons with the patient.

I used this case study as part of my bioethics training because I know the case intimately. The message I wanted to convey was: if this happens in Switzerland, it can very possibly happen elsewhere. I wanted senior medical affairs leaders to see how things can go wrong. And to highlight that if we want patients enrolled in clinical trials, we need to make sure these things don’t happen.

The reactions in the room were varied. The discussion was rich. However, one reaction I received that remains unforgotten, because it astonished me, was the following: “You realise you cannot sue the pharmaceutical company who produces the product?”

Putting patients at the centre of what we do makes sense for the patient, but it also makes sense for the business. Focusing on the patient ensures that clinical research is tailored to patient needs, and that the products that are developed address the real problems not the ones we think are important. This in turn will impact how a product performs in the marketplace. Focusing on patients is an ethical imperative that also makes absolute business sense. It seems obvious to me, however, the lesson I learned that day is that it is still not obvious to everyone. Not the doctor, who called me an annoying relative, nor the individual, who called my relative to tell him, that his cancer had progressed, and not the medical affairs director, who thought, I was interested in making money out of my relative’s predicament, when the reason I shared it, was to highlight areas, where there are gaps, in the hope, that anyone involved in research is sensitised to potential issues so that less patients will experience what my relative experienced.

All you Have to do is Change

As an executive coach and a member of the ISPSO (International Society for the Psychoanalytic Study of Organizations) team dynamics, personal growth and career advancement interest me. As we all know we cannot change others, we can only change ourselves.

Knowing what we want to change can be easy. Test results and 360-degree feedback forms are useful tools here to support the identification of areas for growth but using this information to achieve meaningful growth can be challenging, unless the feedback makes sense to the recipient. For example, telling someone based on 360-degree feedback test results that they need to be more empathetic, more outgoing, communicate better, have more gravitas, etc., in order to be a better leader, is ultimately rarely useful because behaviours, that are exhibited at work, are behaviours that have been developed throughout years of living, and in all aspects of a person’s life. In addition, nobody works in a vacuum.

In order to change anything, an individual can benefit by exploring not what they want to change, but ultimately why. Questions that can help include: why do I interact in this way? How does my behaviour impact me and others? How do others perceive me? How do I perceive them? And the biggest question of all: do I truly want to change? And why? How will a change in this area lead to an improvement in my life overall?

These questions are critical to understanding both behaviours and motivation. Unless changes occur within, none are sustainable.

I hope, as ever, that my blog provides you with some useful insights. I look forward to hearing your thoughts. And of course, if you have a challenging project or would like to discuss coaching to help you achieve that next level, do reach out and we can arrange to chat.

Very best wishes

Isabelle C. Widmer