The human side of a cancer diagnosis

Why does one person respond to a cancer diagnosis with determination, while another falls silent and hesitates? In this interview, Professor Peter Pype shares his expertise.

Prof. Dr Peter Pype is a general practitioner and palliative care physician. He is affiliated with the Department of Public Health and Primary Care at Ghent University, where his academic work focuses on interprofessional collaboration, interprofessional education and communication in healthcare. He obtained his PhD in Health Sciences in 2014 with research on workplace learning for general practitioners in palliative care. Alongside his academic work, he has remained closely connected to daily clinical practice as a GP.

People generally respond differently to a cancer diagnosis. Are there nevertheless recognisable patterns?

"As human beings, we tend to want to simplify things, because it helps us feel we have a better grasp of the world. The impact of a cancer diagnosis is complex. And although we may want to simplify this as well, it is not that straightforward, because every individual is different.

Everyone has a different history and a different experience of being ill. Someone who has been living with symptoms for some time does not arrive in the doctor’s waiting room as a blank slate. Most people will already have thought about it and spoken to others. Depending on the ideas they have formed beforehand, the diagnosis will affect them differently. People who have been coughing for a while, for example, but are not worried, may be completely overwhelmed when it turns out to be lung cancer. People who have had a persistent cough and have smoked for many years may be much less surprised by a diagnosis of lung cancer. They will probably already have considered that possibility.

The only real constant in a cancer diagnosis is that people respond with emotion. In my view, that is the only pattern. As general practitioners, we need to try to recognise and acknowledge these emotions, and talk about them, before we even begin to provide information. That is not always easy. If someone is quiet, does that mean they are taking the news calmly and well, or are they in fact paralysed by fear and sadness? But acknowledging those emotions is essential to prepare for what comes next: the treatment."

Why do some people follow their treatment blindly, while others refuse treatment?

"That question is framed from a doctor’s perspective: people who do what we say versus people who don’t. But that is not how it works. It is not 100% one or the other. People find their own way, sometimes together with their doctor, and sometimes partly without them. This is completely understandable, because people do what is feasible for them. An 80-year-old widow who receives a cancer diagnosis may perhaps prefer less intensive treatment than a young mother with three children. She may have a different view of, and different expectations for, the life that still lies ahead of her.

As doctors, we need to recognise that what is scientifically recommended is not always what is best for the patient. We also need to take the human dimension into account and therefore allow for various intermediate options."

What if someone turns to an alternative treatment, and in doing so undermines conventional treatment?

"Well, homeopathy, for example, will not cure cancer. The consequence for the patient is that he or she will die sooner. But that person may also go through life without the burden of a heavy treatment. As a doctor, you may feel disappointed, and that disappointment may come across as a judgement of the patient’s choice. So, the doctor must discuss everything through: is this a well-considered, conscious decision? And important, the doctor must always remain available, whatever choice the patient makes."

After a cancer diagnosis, people sometimes experience anxiety and depression, which can lead them to postpone treatment. What is your experience?

"If the initial emotions, after the diagnosis has been communicated, are not sufficiently acknowledged and discussed, they can become chronically present. Anxiety, for example, needs to be taken seriously and addressed thoroughly. Persistent, underlying feelings of anxiety can develop into a fear of life itself and lead to depression. And then treatment may be interrupted. So, from the very beginning, the doctor must take the time needed and prevent the patient from being left alone with their emotions."

Is there always enough time for that?

"I find it very difficult when a lack of time is used as a reason not to do something. Is it not simply a matter of planning? If, as a doctor, you discuss care planning with the patient from the start and set it out clearly, then yes, a few hours may be needed. But it is worth the investment. A conversation that takes time now will save a great deal of time in the future. Shared decision-making, in which patient and doctor decide on the treatment together, makes the pathway clear and means that there is no need for constant discussion along the way. The difficult part is planning those few hours, but it is absolutely worth it."

Let us take a closer look at shared decision-making, where the patient and the doctor decide together on the treatment. What do people need to make decisions they will not regret later?

"It is not always easy to convince patients that they have the right to take part in the decision-making process. Often, people expect the doctor to make the decisions. But alongside the doctor’s medical expertise, there is also the patient’s personal expertise, and both are equally important. After a good shared decision-making conversation, both the patient and the doctor will respect the decision they have made together. What matters here is that the patient knows that the final responsibility remains with the doctor. The patient is not responsible for the outcome of the treatment; that responsibility remains with the doctor."

Someone who is told they have cancer needs someone to hold on to. Is the general practitioner best placed to take on that role?

"People are relational beings. A recent study into the most important qualities of a general practitioner found that people mainly prioritise availability and a listening ear. Medical expertise is, of course, important, but in this study, it only came in fourth place. That said, the person who provides this support does not necessarily have to be the general practitioner, nor does it have to be just one person. It can change over time. What matters is that, along the way, you have someone you can trust. That is what it is all about."