Dr Andrew Miller worked from 1983-2007 as a consultant Chest Physician. Some of his patients had lung cancer. He writes here of his experience of and with these patients.
About lung cancer
There are two discouraging facts about lung cancer. Firstly, it is the second commonest (after breast) cancer, which is why I personally cared for 1,000 during my time as a chest specialist. And secondly, it is the second worst (after pancreas) cancer, half dying within six months of diagnosis.
Continuity of care
On my very first consultant ward round, we came to a patient in the side ward for whom there was no curative treatment and whose life was likely to be short. When I asked what plan my medical team had, it was to transfer him to the local hospice, but this needed two buses for his family to visit. So I asked, much to their surprise: “Why can’t we care for him here in hospital?”. The nurses, on the other hand, embraced this approach, and from then on any lung cancer patient who needed hospital care was admitted straight to our ward, if necessary moving another patient. I decided that any case who came to our clinic would always be seen by me personally (unless on leave); doctors doing specialty training could sit in but would not have such patients allocated to them. [Whereas at the local specialist centre a breast cancer patient might see a different trainee doctor every time] I felt that continuity of care was essential so that the patient and relatives could gain confidence with the same person who was experienced, knowledgeable and familiar.
Reasons for late diagnosis
There are two reasons why the outlook is so bad for most lung cancer patients, Firstly (and perhaps surprisingly) the lungs have no pain fibres at all. Pain only occurs when the cancer spreads outward to the chest wall or inwards to the centre of the chest, by which time cure is unlikely. Secondly, the lungs have a lot of spare capacity, so a tumour can enlarge over several months before any symptoms develop.
Those patients most likely to be cured might have seen their family doctor with a new persistent cough, particularly if accompanied by blood, and an urgent chest X-ray then reveals a shadow. My hospital was one of only three within the M25 where the chest clinic had its own X-ray machine. So most GPs sent patients directly to us. We reported the X-ray the same day and were able to recall patients to out-patients within a few days. In my time there I, rather than an X-ray specialist, reported on around 90,000 chest X-rays from GPs.
Should we tell?
In the 1970s I and several other medical students were concerned that most clinicians would not tell a patient that they had cancer, even though most doctors would have wanted to know if it had happened to them. Was it because they were afraid of upsetting the patient? Did they feel emotionally unable to tackle such a discussion? Were they blindsided that, perhaps being unable to cure the patient, they were going to fail? When we discovered that most patients do want to know the truth, we determined to commit ourselves to honesty (with gentleness).
How to tell
In my clinic this was not difficult, because the patient’s chest X-ray was already up on the viewing screen, so I could point out the abnormality. Even so most didn’t come out with “Is it cancer?” I resolved that I would steer the conversation so that they used the dreaded word first. For example:
Me: “The cause of your symptoms can be seen on your X-ray, which shows a shadow, a lump on that side…….what do you think that might be?”
Patient: “Well, I don’t really know. I suppose it could be a tumour?”
Me: “What do you understand by the word tumour?”
Patient: “You mean it might be cancer?”
Me: “In my experience I’m afraid that is likely, so we’ll need to arrange some tests to check it out. This usually involves a telescope test called a bronchoscopy, and a special X-ray called a CT scan. I’ll see you again within a fortnight with those results, when you’re welcome to bring a relative”.
The specialist team
In the mid-1990s we had, like many other cancer groups, a fortnightly multi-disciplinary team (MDT) meeting just before the patients returned to the clinic; I ran and recorded these sessions. This was attended by other chest physicians, a specialist in lung imaging (X-ray and scan doctor), a pathologist who reviewed all the biopsy results, and experts from nearby centres in chest surgery and radiotherapy. Each case was discussed so that we could agree the most appropriate plan for that patient, who then came to see me to explain this and, if necessary, arrange for them to see the right specialist the same morning. Where a cure was clearly unlikely, it fell to me to discuss this with the patient and the family. However, just because something can be done does not necessarily mean that it should be done. This was particularly true of chemotherapy, which rarely led to cure and often had unpleasant side effects; our local chemotherapy expert was very happy to see patients and discuss pros and cons. Often the patient/family would ask me “What would you advise?” To which I would say “Well, if it were me (or my father/wife/) I would recommend…..”
“How long have I got, doctor?”
Invariably, even after their consultation seemed to be over, a patient would suddenly ask this question, wanting an honest answer. My standard reply was “I’ll do my best to answer that, with what I call a ‘professional guess’; professional, because I’ve been doing this for some time, and guess, because you can never be certain.” I would then estimate a likely time-frame, and double it; the reason for this was that many would be shocked if they knew it might be only a few weeks. I might say “Let’s aim for your birthday/Easter/etc.” I remember one patient to whom I said that he probably would not reach Christmas, which led to a rather amusing conversation when he returned in January; after my suggesting that Easter was unlikely, he was chuffed to come back in May. I would offer them the right to telephone if there were problems, and that, if necessary, I could admit them quickly to my ward for ongoing care.
Talking with the family
Patients usually came with a relative who might be keen to be involved but usually felt helpless. Nevertheless I encouraged families to have frank discussions about their emotional reactions, the future, what plans they could make, etc. I emphasized that after death it is very helpful for the relative to look back over what has happened with good memories and conversations. (This is one reason why an unpleasant experience of chemotherapy can leave lasting regret).
Funding specialist nurses
Back to nurses, now those specialized in lung cancer. We had an excellent hospice to our north and the MacMillan service to the south, who could offer terminal care at home and in their facility. Over the years these committed nurses were exceptionally helpful. And an opportunity came to build on that when in the year 2000 the government put a lot of money into all hospital-based cancer services. My colleagues in nearby lung cancer units chose to prioritise this into buying an extra bronchoscope, CT scanning, pathology etc. However, although I too allocated half of the money that way, I realized that what would be of most benefit to the patients (many of whom would be dead within a few months) was to employ two half-time specialist lung cancer nurses. They would overlap at the MDT clinic, cross-cover each other when on holiday, and bounce ideas off on each other. They were based in our department and usually one would sit in with me; before the patient went home they would be invited to have further conversations in their office, offering unhurried time to explore all sorts of questions and concerns. Recruiting two top-notch nurses made an enormous difference to ongoing quality of care. Nurses are often better than busy doctors in developing a trusting ongoing relationship with patients and patiently addressing their concerns. And, if a cure were possible, the nurses could support the patient journey through specialist centres, with information, practical help and a contact telephone number.
For our daughter’s wedding we found an open-top classic car but were surprised when the owner threw in several extras gratis, explaining “I came to your clinic three years ago with my terminally ill mother. She was really keen to go on a speedboat trip in the Solent. Everybody advised her against it, but with your encouragement she went, loved it, and died two days later. Thank you.”
Dr Miller wrote on. the ‘Talking about Dying’ website about the death of his wife from breast cancer.