Finding the Right Healthcare Team
Finding the right doctor, provider, or healthcare team can be a challenge, especially when dealing with a serious condition, like a blood cancer. Whether you’re looking for a general physician to assist with your well-checks, or a specialist to assist with your blood cancer, there are many considerations to be made. Insurance status, location, experiencing or training of the provider, overall compatibility, and more, are all factors that may be taken into account when finding the right fit between you and your healthcare team. An ideal healthcare provider is one who makes you feel safe, valued, listened to, and like you are an active part of treatment decision making and care.
How do I find a provider?
Finding and trying out new providers are often the first steps needed in your journey to find the right team for you. A good place to start is with your family doctor. If you have a general physician that you regularly see, they may know of specialists or other providers in the area who focus on treating various blood cancers. They may be able to put in a referral directly to this new physician, allowing you to schedule an appointment in a timely manner. If you do not see a primary care provider regularly, checking in with the physician, hospital, or other entity in which you received your diagnosis may also be helpful in receiving a referral.
However, if you are unhappy with the physician you are referred to, or do not have a means of getting a referral, it may be necessary to do some research on physicians, specifically hematologist-oncologists, in your area. If there is a university nearby with a large hospital system, this may be a good place to start your search. If you do not have a facility like this nearby, organizations such as the American Society of Hematology or U.S. News and World Report have online search tools to find a physician in your area.1,2 After you find a physician that you’re interested in seeing, calling their practice to find out what insurance carriers they take and what their availability is for new patients is a great next step.
What is a hematologist-oncologist?
A hematologist-oncologist is the type of provider most commonly seen by individuals with blood cancer. This kind of physician has training in the study of the blood (hematology) and the study of cancer (oncology). In addition to being able to treat various types of blood cancer, these providers can also treat iron-deficiency anemia, hemophilia (a disorder in which the blood doesn’t clot normally), sickle-cell disease, and more. Depending on your personal situation and relationship with your hematologist-oncologist, these physicians may sometimes take on the role of a primary care provider as well.
What do others in the blood cancer community think?
In order to find out more about various issues within the blood cancer community, including opinions on finding the right healthcare team, we conducted the 2018 Blood Cancer In America survey. The survey received over 2,500 responses from nearly 2,000 individuals who have received a blood cancer diagnosis or who are in the process of being diagnosed, as well as over 600 caregivers to these individuals. The survey contained over 100 questions related to quality of life, ongoing symptoms, additional health conditions, treatments, and more, leading to results that provided an interesting and in-depth picture of what life with blood cancer is like.
Overall, many respondents reported high satisfaction and comfort levels with their healthcare providers (especially with their hematologist-oncologist), however, there were some commonly reported concerns. When it comes to their negative opinions of their healthcare providers, many respondents reported frustrations with having limited conversations about treatment options and their potential side effects. Another common frustration reported by survey respondents was that their provider left the practice or that they had to change providers for another unexpected reason. Other healthcare provider-related concerns reported by respondents included:
- Lack of communication between healthcare providers
- Differing opinions amongst healthcare providers
- Lack of empathy for feelings or concerns (lack of emotional care)
- Financial burden of care costs
- Long wait times for test results
- Lack of discussion on long-term prognosis or side effects
If you (or a loved one) feel unsupported or unvalued by your healthcare provider, seeking a second opinion or trying out a new provider is always a potential option to ensure you receive the care you deserve.
Have you met another blood cancer patient?