Patient safety advocate Donna Davis wants patients in diluted chemo cases to be heard: A Yahoo! Exclusive

Donna Davis is a cancer patient, a nurse, and the co-chair of Patients for Patient Safety Canada. She also lost her son as a result of medical malpractice. In the wake of news that nearly 1,200 cancer patients in Ontario and New Brunswick were treated with diluted chemotherapy drugs, Davis told Yahoo! Canada News that in cases where medical safety is jeopardized, it's crucial the authorities listen to the views of those who matter most — the patients.

Once the damage is done, medical staff must be prepared to deal with more questions and more anxiety from the people in their care, Davis says. And they owe those patients the chance to speak up about how healthcare should change.

Here are some excerpts from that interview.

Y! Canada News: What was your first reaction when you heard that more than 1,000 patients in Ontario and New Brunswick had received diluted doses of chemotherapy?

Donna Davis: As a cancer patient myself, my first reaction was 'Oh, those poor people.' Because I know the fear and the angst and the 'What do I do next? What's the right treatment for me?' that we all face as cancer patients. We hope to goodness that the treatment that we decide on with our oncologist and our medical team is the correct one and any compromise to that treatment plan is very fearful.

Are you undergoing cancer treatment right now?

Davis: Just oral medical for breast cancer right now. The five-year treatment.

I’m sorry to hear that. What do you think we need in order to have greater oversight, to prevent things like this from happening?

Davis: I'm sure that there will be a quality improvement investigation, a quality assurance investigation done to find out where exactly the error took place in mixing the chemotherapy for the cancer patients. I'm confident that will be done very, very well by the cancer centres or the facilities that were involved, which will include, of course, the manufacturer and the place the medication was mixed. ... If there are corrective measures that need to be put in place or policies, procedures, again, I'm confident they will be put in place.

The government’s response has been more or less that while this situation is worrisome, authorities are working quickly to investigate and rectify the problem. Is that a fair response given the damage that may have already been done to patients?

[ Last week's One-On-One: CBC’s Rick Mercer in no hurry to perform rants from inside Parliament ]

Davis: I think anyone involved in healthcare, the practitioners, the clinicians, the nurses; I think everybody in the healthcare system is always being very diligent about the safety of patients. ... There are always quality measures put in place and we’re constantly learning. And I say we because I’m a nurse as well as the co-chair of Patients for Patient Safety Canada.

Are we as good as we need to be? Absolutely not. But we are always diligent about looking for ways improve with procedures and policies and care that’s given at the patient’s side.

Davis: As a nurse and as someone who advocates for patient safety, you have an interesting perspective. What is your suggestion for improvement in a case like this?

I think the patients who have experienced this, this failure, the compromisation of their treatment, for the people who are in the higher levels of management to hear their story will really light that fire underneath them to make sure that changes are done as quickly as possible and as effectively. ... Hearing the voice of the patient, hearing what they went through and how it’s affecting them is the most effective way to bring about change.

That’s what we at Patients for Patient Safety Canada do. We tell our stories to health leaders, to medical schools, nursing schools, organizations, conferences across Canada, to bring that patient voice forward, to touch the minds and the hearts of those providers. To light that fire under them, to say we need to do this; this is urgent.

[ Related: Safeguards needed in wake of diluted cancer drugs, says New Brunswick premier ]

What is there left to do in order to make sure the patient’s voice is heard? What’s lacking?

Davis: There is somewhat of a reluctance to include patients on the quality assurance committees, etc. that you find in the local hospitals. It is starting to emerge but there needs to be a lot more inclusion of the patient and a lot more accepting of the new patients who are familiar with the Internet and do research and will come with questions that maybe the providers aren’t prepared for. I think there needs to be preparation that there’s a more informed, knowledgeable patient coming, seeking services.

We have signs up in a lot of facilities saying ‘it’s safe to ask’ and ‘it’s okay to ask.’ But sometimes when those questions are asked, they’re not received very well. We need to do a better job of preparing our providers to answer those questions.

We don’t need to be perfect. We want to be perfect and the patients want us to be perfect but I think everyone realizes that to err is human. It’s how we respond to that error afterwards that makes all the difference in the world.

How should the patients in this case be included going forward?

Davis: If there are plans being made for improvement, they need to invite some of the patients. There’s what, 1,000 to choose from? They need to invite some of them to be at the table while they are discussing some of these improvements, so that the patient voice is there. ... They’re the ones that come up with some really great ideas for improvement.

My understanding is that every member of Patients for Patient Safety Canada is someone who has experienced a safety problem in medical care. What brought you to the organization?

Davis: The death of my 19-year-old son from medical error, 11 years ago on April 1st in Saskatchewan. That’s what brought me to this place because I knew that what happened to him didn’t have to happen, shouldn’t have happened and I wanted to make sure that it did not happen to any other patient or any other family.

There’s a phrase I like to use: We can’t get back what has been lost. We can’t undo what’s been done. But we can work together to make improvements so that everybody, every patient is safer and every family is treated with respect and compassion.

[ Related: Diluted chemo drugs given to 26 other Ontario patients ]

I’m impressed at how positive your outlook is, and at your confidence that things can be improved.

Davis: I know it’s not going to be overnight and I still feel the frustration when things don’t move along as fast as I’d like them to. When I see that patients are not on the committees throughout the health regions, their quality improvement committees, when I see they’re not on there, when there’s a reluctance to include them, the patients and families, that’s really, really frustrating to me because I know it’s what needs to happen to make sure that we really are giving patient and family-centred care.

I have the spiritual energy and that is the hope and the belief that things will change. ... We have to be positive because we can make a choice. When my son Vance died, the physician I worked with said to me, “Donna, you can let this make you bitter or you can let it make you better.” I hope Vance and I are making things better for the people who come behind us in the system.