By Andrew Griffith
Andrew Griffith has mantle cell lymphoma and has had auto (November 2009) and allo (August 2011) stem cell transplants. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com, is working on a book on his journey, and can be followed on Twitter @lymphomajourney.
Part of the challenge of having cancer is learning how to work with your medical team: doctors, nurses, pharmacists, dietitians, occupational and physiotherapists, and social workers.
A number of people and organizations have provided advice on how best to work with your doctor. One of the better ones is by Massachusetts Health Quality Partners and Consumer Reports (here), and a number of others worth noting include Pauline Chen's Afraid to Speak Up at the Doctor's Office, Tamara McClintock Greenberg's The New Rules of Modern Medicine, Mary Elizabeth Williams Listen up, Doctors: Here's how to talk to your patients, Marie Meservy's How to Win Friends and Influence Doctors, and Martine Ehrenclou's Tips to Maximize the Relationship with your Doctor.
While there are common threads to all of these (courtesy, respect, preparation, honesty, teamwork), most advice has been written from the perspective of either the patient or the doctor, rather than from a shared perspective. With this in mind, I came up with the following list of shared responsibilities:
1. Be courteous and respectful. We are human. We respond to how we are treated by others, consciously or not.
For patients and their caregivers, this means treating everyone in the medical team (including the people who clean the hospital) politely and with respect. In other words, be nice. Saying thank you goes a long way.
If there is an issue -- and there will be some -- raise it calmly and phrase it in terms of quality control. Use your people skills to get the point across in a clear but non-antagonistic manner. Of course, some occasions may call for a more forceful style, but start off softly and only escalate if necessary.
As patients, we are stressed, sometimes discouraged or even depressed, so we will occasionally overstep the mark. Medical teams understand that and generally handle it professionally and with understanding.
However, again being human, if this is ongoing behavior, relations will be strained and care may not be delivered with the same warmth and empathy.
2. Be present. Medical teams benefit from the experience of dealing with many patients facing the same kind of existential questions, worries and fears. From a patient's perspective, we expect to be treated as a person, not "a collection of faulty body parts." Members of the medical team, please strive for the following:
- Empathy and understanding: Not the cold style of the oncologist in films like "50/50," but recognition of our vulnerability as you help us through treatment decisions and the treatment itself.
- Eye contact: Don't hide behind the computer screen when talking to us. We know you need some time to input notes and read us our scan or lab results. But make sure the important messages are delivered directly, not mumbling from behind a screen.
- Plain language: Use simple language and help us through the learning curve as we begin to understand our new vocabulary. "Cheat sheets," information booklets and recommended websites can help here.
- Time management: As patients, we should value your time. Similarly, while the juggling act between seeing every patient and providing the time each needs is hard, avoid making the impression that you are rushed, that we are a number and that you want to leave as soon as possible. If it really is a crazy day, as often happens, let us know.
One time, I had a Prezi presentation to show my hematologist; he asked me to do it as "homework" or therapy. He didn't miss a beat but stepped out, told the next patient he would be a bit delayed and then came back in.
3. Be open and honest. Our medical team can only help patients if we are open and honest about our condition, side effects, fears, issues like depression, other care we are receiving, what is important to us and so on.
There is no shame in raising these kinds of issues, and many cancer centers have a range of staff with different expertise to help us.
In the case of my family, to help us work things through together, we had a few joint sessions with the social worker/counselor. This was helpful because we were able to start having more open discussions about what I was going through and how this was affecting those around me.
For the medical team, we expect you to be honest with us. Tell us when things are going well or not. I only had one experience with a hematologist sugar-coating prospects at my initial diagnosis. Otherwise, my medical team has given me dispassionate advice and information, delivered with the requisite empathy and understanding.In another post, I will discuss how to be informed and prepared for discussions with your medical team, and other ideas on how patients and health professionals can work better together as a team.
Read more posts by Andrew Griffith
Working with your medical team part II
Patient rights and responsibilities