I’m a patient advocate for Guys and St Thomas South East London Consumer Research Panel for Cancer (SELCRP) cancer program in London. My husband was treated for stage IV small cell lung cancer (SCLC) at this excellent hospital.
Patient advocates advise on research and written materials for proposed or actual trials to try to give a patient or caregiver perspective on treatments at an early stage of development. We also offer help on patient information for grant applications. Mostly, we are lay people with a lived experience of cancer, rather than clinicians or medical researchers.
At the 2025 World Conference on Lung Cancer, I participated in a panel where I spoke about the patient and their caregiver experience after being diagnosed with cancer—what it is like from the first assessment of illness to treatment, navigating offers of trials, and, in our case, dealing with the progression of terminal disease. Our personal experience involved two different hospitals—one poor, one good.
We learned how vital communication is, in relation to this journey, and how that is handled by a clinician and how that is heard by a patient and their caregiver. It seemed to me that this was the issue that could make the biggest single difference in improving the experience of care from our perspective.
However good a clinician or researcher one might be—and the world is full of fantastic, capable people in these fields—it is critical for patients that healthcare professionals remember the following:
- The patient is a person, not an illness. Patients are not a set of replicating cells. First and foremost, they are a being with a history and a future—a future that includes you. They have family, loved ones, colleagues, and friends. They have dreams and fears. From the outset, engage with the person rather than talking to them as if they are a series of symptoms or treatment needs. Find out who they are before treating them.
- Clarity of language. Ask yourself how clear you are when you are explaining the diagnosis. Acronyms and medical jargon are difficult for patients and their families to understand. The experience of a cancer diagnosis is frightening. Avoid using words that may be unfamiliar to patients and caregivers. Consider how to explain things in an understandable way from your first encounter through the subsequent stages of illness and treatment. How would you explain a diagnosis and treatment plan to your own family member in a way they can understand?
- Speed the release of information. How much time do you take when you communicate with a patient or their caregiver? It may take patients much more time to absorb medical information than clinicians realize. Thus, you may have to repeat things. You may have to carefully control how and when you share information to avoid overwhelming patients. Not all of what you say will be heard the first time you say it. Consider the experience for the patient; how much of it is possible to mentally process and understand at any one time?
- Compassion. The “how” of communication is key, the tone and intent with which you convey what you need to. Can you imagine the impact of what you need to say to a patient or their caregiver? Can you put yourself into their shoes? Are you always ‘kind’? The stress of a diagnosis like this is unbelievable, as are the large amounts of information they will have to absorb from the moment they have their illness explained to them, to the plans and progress of treatment, side effects, and results. How compassionate are you when you communicate?
- Choices. Do you always treat the patient and caregiver as if they have choices? Do you ask them or tell them information? If they do not want a prognosis, are you prepared to allow them not to hear what may happen? If they want to have certain types of treatment or do not wish to, do you always listen to their wishes? Having a cancer diagnosis removes many normal choices in life; it is important that patients are allowed to still make decisions about what happens to them.
- Care. Do you communicate the whole picture of care to a patient? Do you just tell them about illness and treatment, or do you also make them aware of how striving for “health and well-being” may help them? Do you talk to them about optimal nutrition, about exercise, and about keeping a positive outlook and continuing to lead as full a life as possible? All these things are part of the total package of care the patient and caregiver need to know. These are things that they can use to help themselves. Are you making this part of your discussions with them?
- Courage. Do you encourage patients and carers to be optimistic? Do you understand that we all need hope to move forward in life, whoever we are and whatever may be afflicting us? Do you know how unbelievably courageous patients and caregivers are? Do you encourage their courage to look into the future? This will not only extend their life, but it will also increase the quality of it. In the words of David Bowie: “It’s not how long your life is that matters, but what you do with it that counts.”
Beyond each of these seven tenets about good communication, I want to share with you another final one: humor. This is often neglected by everyone caught up with a cancer diagnosis, yet it sustains us through the dark comedy that is life, with all its vicissitudes. For both clinicians trying to heal, and patients trying to survive, it’s helpful to remember that amidst all the difficulties of illness, it’s humor that keeps us all human.
