Why did you choose to discuss this topic with us?
I had the privilege of presenting to patients on the topic of higherrisk MDS at a recent meeting of the Aplastic Anemia and MDS International Foundation. I was preparing my slides - reviewing many of the usual topics we discuss, such as prognostic scoring systems, cytogenetics, and hypomethylatıng agents. It occurred to me that while having a fi rm understanding of these topics is critical for an MDS physician and important for a patient, I rarely spend much time thinking about these issues during a visit with a patient. That is, the science of medicine helps us understand the pathophysiology and disease course of MDS in groups of people, but the art of medicine helps us understand the disease for a given patient and how to best treat them. Thus, I assembled these thoughts to communicate what I think about when I see a patient and how this informs the art of medicine.
Why is it important for MDS patients to understand a doctor’s perspective and outlook on their treatment and prognosis?
There is an essential humanistic element to treatment beyond a patient’s medical history, facts, data and test results. We’d love to use a scientific scale or algorithm to decide a specifi c therapy for a patient and know the exact outcome. But, that doesn’t, and can’t, occur in medicine because each patient is unique. This is where the art of medicine comes into play. It is important for a doctor to make every effort to understand what make the patient “tick,” what makes them human. Similarly, the better an MDS patient understands their doctor’s perspective and what their doctor is thinking in not only the science, but the art, of medicine the more a rewarding two-way relationship can develop.
Can the doctor’s perspective and outlook really affect the course of treatment and the patient’s experience?
Absolutely. Patients will have a more satisfying treatment experience and relationship with their doctor if they feel they are being heard and understood. Like any relationship, both parties want to feel heard, understood, and validated. The more aware a doctor is of the issues that pertain to a patient’s life and way of living, the stronger the bond of their relationship and the more personalized the therapy can become.
Why does it help for doctors to be informed about a patient’s personal situation and lifestyle, overall level of motivation and the amount of knowledge they have about their disease?
These are some of the key elements of what I think about when I see a patient. I need to know that a patient understands at least the basics of their disease. MDS is a complex disease and much more abstract in some ways compared to a more straightforward disease like lung cancer or heart disease. With MDS, we know that the bone marrow is dysfunctional. Blood cells may develop, but are arrested in their development. Iron metabolism is altered. The percentage of bone marrow blasts may be increased. These are a few of the abstract concepts that come into play. I spend a lot of time with patients going over bone marrow reports and blood studies so I can be certain that they understand their disease. My nursing staff is also very helpful in this education process. Among the concepts we teach them are how to understand their complete blood counts (CBCs), bone marrow and cytogenetıc reports.
Understanding a patient’s lifestyle also is important in formulating a treatment plan. Preservation of lifestyle is important to all patients and is the most important aspect of care to some patients. Understanding what motivates a patient to live and trying as much as possible to preserve the lifestyle activities that motivate that person helps improve their sense of empowerment and overall satisfaction.
What can patients do to help their doctor become familiar with the non-medical aspects of their lives that may infl uence the course of treatment chosen?
The most important thing is to be honest and upfront with what is important to you as a patient. For an older MDS patient, it might be playing golf, seeing your grandchildren, spending time with your spouse or partner, or working on a hobby – you want to be forthcoming with the healthcare staff about your priorities. At the same time, if your personality is such that you won’t rest until you know you are doing everything possible to fi ght your disease, which most often means choosing a more aggressive treatment option with more clinic visits and hospitalizations, you may have to sacrifi ce certain activities you enjoy. It also means that you would fi nd it psychologically challenging to embrace a treatment plan that was life-prolonging but not potentially curative. A patient’s attitude toward lifestyle versus “cure” is something I strive to understand for each patient over time so that I can recommend the most appropriate treatment plan.
Doctors think about categories surrounding a patient’s medical issues, but also their personal situation and quality of life issues. What are some of questions you have in mind with regard to these areas?
In my mind, I think of the following categories.
This first category involves questions like “How well does the patient understand their disease?” and “How much time should we set aside to make sure we get the patient’s understanding to a level I think necessary for them to make informed treatment decisions?”
The second category is “How well I do understand their disease?” which gets into treatment history, any other conditions they may have, and their current test results.
The third category is “What’s motivating the patient to live?”, which can be as simple as me asking them how they like to spend their days, what activities they enjoy and to what extent, what they do for work, what are their hobbies, and who are their friends and family.
The fourth category deals with their support system. Who helps them? Do they show up at the clinic alone, or does a partner or a family member come with them?The fifth category is an impression I gather over several clinic visits - my assessment of their overall physiologic health. That is, how strong a therapy they can safely tolerate. This category also involves how close they live to the treatment center, and how motivated they really are to come to clinic or be hospitalized for more aggressive therapies. Once I have reached that conclusion, I cross check my impression with the patient and try to integrate all of these areas to make the best treatment recommendations possible.
The sixth category involves discussions regarding health care choices: delegates and end of life. At some point during treatment, the timing depending on my impression of the patient’s prognosis, I have to decide the appropriate time to discuss health care proxy and end-of-life issues with each patient. The shorter the prognosis, the more imperative it is to discuss. However, it also depends on how ready the patient is to discuss these issues.
Some patients respond to this conversation with fear and anxiety, wondering if my bringing up these issues represents a hidden message that I think the end is near. Others have already thought through these issues and are grateful I brought them up for discussion. Most people need several visits to discuss these issues, and I usually try to bring up these points when they have a family member or close friend present to serve as a support.
It is important for me as a doctor to gain the deepest understanding I can of the different medical and lifestyle dimensions for each patient; this allows me and the treatment team the ability to merge the science and art of medicine. The more honest and forthcoming patients are about their medical history, lifestyle, and motivations, the better their care will be.