Medical Matters: Illness, disease and the introductions inbetween

I am occasionally taken aback by the disparity between a patient’s description of a hospital stay, and the facts laid out in a detailed discharge summary.

On the one hand is the professional description of a good outcome following a visit to an emergency department, in which a comprehensive diagnosis is followed by appropriate investigations and apparently prompt treatment.

But when you speak to the patient and their family, and despite a full recovery, they may be convinced they had a terrible experience during the hospital stay.

Why such different views of the same hospital visit? Who is right? The doctors and nurses who provided what they regard as exemplary care, or the patient and family who believe they were treated badly?

Illness and disease

I suspect a key element in this apparent discordance is due to the difference between illness and disease.

Illness is a person’s experience of having a particular disease; it is subjective and varies widely between people. Disease, on the other hand, is an objective and scientific diagnosis.

The symptoms and signs of diabetes, for example, are taught to medical students. They learn what investigations to carry out to confirm the diagnosis, followed by possible treatment options depending on to what stage the disease has progressed.

As a wise medic once said: “Illness is what you have on the way to the doctor or hospital; disease is what you have on the way home.”

In the case of an acute emergency, it is a good thing for healthcare professionals to focus on objective measures. But they are not enough, and the patient may feel they are being treated as a disease to be cured rather than as someone who needs to be looked after in a more holistic way.

A simple courtesy, but one of huge importance to patients, is for doctors and nurses to introduce themselves.

There is currently a campaign in the NHS called “My name is . . .” It was started by a young doctor after she was diagnosed with cancer last year. Dr Kate Granger became frustrated with the number of staff who failed to introduce themselves to her when she was an inpatient with post-operative sepsis.

Dr Granger, who is unfortunately now terminally ill, started a campaign on Twitter asking NHS staff to make a pledge to introduce themselves to their patients in future.

“This felt very wrong so, encouraged and supported by my husband, we decided to start a campaign to encourage and remind healthcare staff about the importance of introductions in the delivery of care.

“I firmly believe it is not just about knowing someone’s name, but it runs much deeper. It is about making a human connection, beginning a therapeutic relationship and building trust.

“In my mind it is the first rung on the ladder to providing compassionate care,” she says.

Other “connections” could involve asking a patient would they like a relative to be in the room as well as explaining the meaning of any ongoing medical activity.

Caring

These actions tend not to be on checklists for the treatment of various conditions, but they are an important part of caring. They have a place alongside high-tech urgent interventions.

It has to be said, though, that holistic elements of healthcare are often the first to go when services are cut back and health professionals are placed under unrelenting pressure.

Health system factors such as lack of time, not having enough space, teams left short of essential colleagues, and computer systems and other equipment malfunctioning, all mitigate against connecting fully with the patient.

And, of course, patients and their families have an important role to play. If you are feeling confused or scared, say so. Ask for clearer explanations.

Most issues are best dealt with at the time; waiting until after discharge to raise your concerns is probably a missed opportunity, both for you and the professionals doing their best to look after you.

mhouston@irishtimes.com muirishouston.com