Years ago, when I was training as a palliative medicine doctor, I saw a woman with lower back pain. I knew from her medical history that she had breast cancer, so I wanted to make sure it hadn’t spread to her spinal area. I was fairly certain that it was probably only a muscular pain, and so I reassured her. Her examination findings had not revealed any red flags, so I felt a bit of positivity was not misplaced, as she was feeling very anxious.
Her MRI scan, however, confirmed the worst: a full-scale invasion of a region called the cauda equina in her lumbar spine area. “You were certain it was going to be all right, and now I have to be admitted to hospital?” she exclaimed, visibly upset. She needed urgent radiotherapy to the area and had to be stretchered to hospital. Sadly, despite treatment, she became unable to walk and required a wheelchair.
In my early years as a doctor, I thought it was my role to be positive, sometimes overly positive, with patients and their next of kin, reassuring them of a low likelihood of my worst suspicions being confirmed. Yet I started to find myself regretting what I had said, especially when a hunch became a reality. “I wish you’d told us this might happen so we could prepare,” was one of the comments that would come back.
A turning point for me was when I had to get informed consent from patients, to indicate that they had understood all the risks of a medical procedure. When you have an anxious person in front of you, it can feel cruel to list a whole lot of complications (“bowel perforation”, “stroke”, “death”), but the longer you work as a doctor, the higher the likelihood that you will eventually see some of these rare side-effects. And so it was for me, when a patient lost vast amounts of blood after a routine day-case hospital procedure and had not fully appreciated the risks. He survived, required blood transfusions and told me he would not have undergone the operation had I been sufficiently blunt about the risks beforehand.
As a palliative care doctor, I deliver a lot of bad news. That has meant learning how to balance my instincts to not worry an individual, when I suspect something bad may be going on, versus the need to inform them of all possibilities. “We can do a scan of your head just to check what is affecting your balance” can sound slightly more reassuring than “I want to scan your head because I am worried your cancer may have spread to the brain and caused metastases there”.
The key for me is to assess the person I am speaking to and find out what they want to know. Some find too much information distressing and they tell me so from the outset. Others want all possible outcomes laid bare, regardless of how distressing I might deem them to be. But I’ve learned over the years that excessive positivity can be damaging.
There is a lot of pressure to be positive these days. Some people even regard it as a form of wellness treatment in itself and warn of the potential dangers of “allowing negativity into their lives”. But such enforced optimism ignores the realities of our existence. Some patients seem to think negativity will shorten their lives. But researchers in different studies have tested the hypothesis that optimism can impact survival in cancer patients and have found that it does not have an impact. In one of these studies, there was a suggestion that encouraging patients to be positive perhaps even represents an additional burden.
Whether you have terminal cancer or not, believing everything must stay positive just isn’t sustainable. It needs to be balanced with realism. An expectation that outcomes will and must always conclude well can in itself create disappointment and anxiety – because, at some level, we know that we cannot guarantee those wishes will come true.
Being pessimistic or negative on occasion can help, and patients tell me that it is pragmatic and even reassuring to talk about the worst-case scenarios that may lie ahead. When my patients spend more time getting used to the very real possibility that things will work out not so well, it can reduce anxiety considerably over future weeks and months.
“Never interrupt a patient who is expressing negativity,” said one of my mentors once, and she was right: it’s far better to listen and talk it through. And do not be afraid to discuss potential negative outcomes with those who have put their lives in your hands, even if the news may sound terrifying. By considering the worst and the most negative scenario, we do not make it more likely that it will actually happen. Now, I always ask my patients and their loved ones how much they feel they can handle. Nearly all want a doctor who talks frankly, but with honest compassion, outlining what may be ahead.
Prof Mark Taubert is a palliative care consultant based in Cardiff
