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. Figuring out who does what, the hierarchies, and how best to intervene, is part and parcel of being an informed and empowered patient (one who views treatment and recovery as shared objectives and responsibilities).
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 either 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:
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 (and 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.
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 Hollywood 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 as simple language as possible, 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 giving 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 had asked me to do it as ‘homework’ or therapy!). He did not miss a beat but stepped out, told the next patient he would be a bit delayed and then came back in.
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/counsellor. 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.
Be present, informed and prepared
We surrender much of our life and control to our medical team. They have the expertise and experience that we lack, and we are very much on the learning curve throughout. One of the few areas that we exercise control over is how informed and prepared we can be for our discussions with them.
Patients spend too much time on the web trying to become instant experts on their particular cancers and treatment options. We need to recognize our limitations, ask the medical team for sites they recommend (for more tips on this see here), read the material they give us, and focus on knowing enough to be able to ask good questions and better understand the information from your team. Generally, the team as a whole will provide the breadth of information required.
Come to appointments with a list of written questions (I keep a running tally). Order them in priority, if time appears to be running out. My hematologist often tells me, when I say I have some questions, ‘Only three!’.
While in practice he and his colleagues are more flexible, it is a useful reminder that their time is precious. As patients, we need to focus, take notes and come with another pair of ears for important discussions.
Alternatively, as one of my doctors suggested, come with a tape recorder, as some of us find it hard to listen intently and take notes at the same time — and friends or caregivers may be more or less reliable in their note-taking. But ask your doctor first if he or she is comfortable being taped!
For the medical team, questions are part of the deal in caring for us. Please be patient with us as we may need more time to process our new reality. Orient us to the sites or other sources of information that can help us as well as help you.
Ask your patients to summarize what you have told them, to ensure you know whether they have understood correctly (patients can also initiate this ‘replay’ technique).
Work together as a team
Patients and medical teams are in this together, with the shared objective of as successful treatment as possible. Being courteous and respectful, informed and prepared, open and honest is part of this teamwork approach.
But patients can do more than this and should follow the recommendations of their medical team. Find ways to exercise and be active, commensurate with your condition, and remain engaged in the outside world.
Don’t let cancer metastasize your life, to use Mark Dery’s wonderful phrase.
If you have issues like despondency or depression, seek help, whether from a faith leader, counselor, or trusted family member or friend. Take ownership of what you can, rather than only submitting to treatment. Be as active and engaged as possible; it is your health after all.
Medical teams can help by encouraging us. My medical team encouraged physical activity and gave me guidelines on how much — and when not — to push myself. They were less active on other aspects, leaving the initiative with me to see the counselor.
I have been lucky with my medical team, with whom I developed good and close relationships during the last three years. One of the ironic side benefits of cancer treatments is developing closer relationships with the people caring for you.
While sometimes my questions and probing may have irritated them, it was also clear that they appreciated my efforts to understand, make the necessary decisions and be as active as possible to help my recovery process.
This post was inspired by comments made by my medical team. One of them put this relationship in context, and made the lovely comment on their commitment to our well-being:
…. I was happy to see your advice about the Internet to patients. One of our physicians has a good analogy when dealing with patients who are basing medical decisions on information from the Internet for family or friends. When you get on a plane for a trip, you don’t ever think it is appropriate to go to the cockpit and start questioning the pilot on how he flies the plane. You trust that the pilot and team know what they are doing.
Patients are diagnosed with complex illnesses and turn to the Internet for answers. These patients take up a lot of time questioning the diagnosis, the plan of treatment and why decisions are made. You would never turn to the Internet to question the pilot on his flying technique.
Our specialists understand the complexities of your illness and work hard to ensure the best outcomes for the patient. On the other hand patients are their own best advocate and should be able to openly ask about concerns they have. ….
None of us feel good when patients succumb to an illness. None of us profit from patients who don’t live. I go home every night to my children and hope that I have done the best job I can do to keep my patients healthy and safe.