The nurses have kept me going"

January 10, 2009 -- Today the BBC News web site posted an article by Jane Elliott about the key role "specialist" nurses have played in the survival of one lung cancer patient, and the need for more such nurses to care for U.K. patients with the disease. Most of the piece describes the experience of insurance broker Donald Sutherland, who was given just three months to live following his diagnosis, but has lived for 13 years. Sutherland could not possibly be more glowing about the "excellent care" the cancer nurses gave him. But he could be more specific, since detailed descriptions of what nurses do are far more valuable in educating the public about nurses than general encomiums are. Sutherland does at least convey that the nurses answered his questions and pushed to make sure he was adhering to treatment and getting the attention he needed at the most difficult points. The article also provides data about the prevalence of lung cancer, and the shortage of specialist nurses relative to comparable conditions like breast cancer. It consults two experts from U.K. lung cancer groups who provide some more information about why the nurses are needed--one points to the "information" the nurses provide--but the comments of the experts also could have been far more specific about what the nurses do. Even so, we thank Elliott and the BBC for a generally helpful piece.

The piece begins by explaining that Sutherland has outlived his physicians' initial survival prediction, noting that he is now "campaigning to get more specialist nurses to help people like himself." He has had treatment for tumors on his lungs and surgery to remove the cancer from his brain; he now has one tumor left in his lungs, but it has not grown in six years. The heart of the piece is Sutherland's descriptions of the "high quality" nursing he says is partly responsible for his current good health:

I had excellent care and I am a great believer in a positive outlook. There was one specialist nurse who treated me. She was excellent and was helped by a Macmillan nurse and they carried out all my chemotherapy which is the difficult treatment. I think part of the reason I have done so well is the nurses' help. They made it more personal because I was with a small unit and there were only a maximum of two of us at a time getting chemotherapy.

I did get to a stage with the treatment where I told my wife I was not going back because it really knocked me down. I did go back, needless to say, because I thought one or t'other of the nurses would have been on the phone otherwise asking me why I was not there and I didn't want to let them down. When I came off the chemo they put me on steroids and I had a trip like an LSD drug trip. I could not speak. One of the nurses phoned me when I was like that and thought I was having a heart attack so she phoned the local GP to get him to the house because she was so worried about me.

They were really great. They answered questions and were extremely helpful in loads of ways, they took care and treated you like a patient whereas general staff treated you as a number. I should not generalise, but these two lassies were absolutely fantastic.

The best parts of these comments are those in which Sutherland tells readers what the nurses actually did for him. They answered his questions, they assessed his condition over the phone and acted to get him help, they showed him that they cared about him, and they tried to make sure he was adhering to treatment. We could have used even more detail about some of these. What kind of questions did they answer? Did they give him certain types of information? Did they show expertise? What did they do, specifically, during his chemotherapy sessions? The narrative is full of general praise--the nurses gave "excellent care," they made it "more personal," they were "really great," they were "extremely helpful in loads of ways," they "took care and treated you like a patient" rather than a number, they were "absolutely fantastic"--but these are actions that do not necessarily require a "specialist nurse." The remainder of the piece describes the need for more of these nurses, and it seems to us that specific descriptions of their qualifications and actions are more likely to motivate decision-makers to provide the resources and efforts necessary to make that happen.

The article says that "experts feel there are far too few specialist nurses to deliver the care needed." It reports that half of all lung cancer patients die within six months of diagnosis, and that lung cancer claims the lives of 14,000 women annually compared to 12,400 by breast cancer. Yet there is only 1 lung cancer specialist nurse for each 132 diagnoses compared to 1 breast cancer specialist nurse for each 82 diagnoses. The piece consults two lung cancer experts. Maria Guerin, chairwoman of the National Lung Cancer Forum for Nurses, says the specialist nurses are critical because of their knowledge:

To receive a diagnosis of any sort of cancer is shattering, but particularly with lung cancer, which has such a poor prognosis. Patients after diagnosis can last on average just six months and they need a lot of information, psychological support and financial support. You need the specialist knowledge to know at what stage they need what information. They need the right information at the right time.

That is a good statement of why the nurses are valuable, because it tells what they can do that not just anyone can, though even this statement could have been more specific about what information the nurses provide. The other expert is Dame Gill Oliver, chairwoman of UK Lung Cancer Coalition. She notes that "[t]here is quite a lot of evidence from patients and carers as to the benefits that specialist nurses provide for people affected by lung cancer." Once again, that's great, but what exactly are the "benefits"--better outcomes? What is the "evidence"--peer-reviewed studies? And what will it take to get more of the nurses--do they get extensive training that requires more money?

This is a helpful piece about the role specialist nurses play in the care of lung cancer patients. But it would have been far more helpful with more specific information to show that the nurses are not just nice people, but highly skilled health professionals.

See the January 10, 2009 article "The nurses have kept me going" by Jane Elliott on the BBC News website.