Cancer treatment is very complex, entailing more than a few doctor’s visits and some prescribed medications. Patients typically work with a whole medical team on different aspects of their treatment plan, from managing side effects to help with health insurance and paying for treatment. With so many decisions to make and so many people involved in one person’s care, it’s important for patients to empower themselves and be active participants to ensure they receive the quality of care they deserve.
Standards for the Quality of Cancer Care
Measuring the quality of care oncologists and their medical team can provide has been an important aspect in discussions and studies for many years. A report by the Institute of Medicine has been a main inspiration for many of these discussions and remains a blueprint of sorts for doctors to provide the highest quality of care. The study noted across all cancers, diagnoses in the elderly are more common, which can make it even more complex to deliver effective treatment that is also tolerable by these patients.
For mesothelioma patients who are diagnosed at an older age, for instance age 55 to 75, only around 10% or less survive 5 years after diagnosis. Researchers explain this poor life expectancy is largely because seniors often having other health conditions that complicate and limit available treatment options, as well as seniors having a more difficult time tolerating aggressive treatments for the rare cancer.
Through various studies and workshops with patients and practicing oncologists and medical teams, the IOM developed six overarching points to improve cancer care. The researchers discovered in the past, cancer treatment and beyond hasn’t been as accessible, patient-focused, or as evidence-based as it should be. From these points, they developed these basic themes to help drive quality.
- Help patients be more informed and engaged in their medical decisions
- Improve training and coordination for all staff involved in patient’s care
- Focus more on clinical trials and research data to inform treatment decisions
- Utilize technology to improve various aspects of care, including research and patient outcomes
- Incorporate new clinical findings more quickly into medical decisions, with better measurements and research into progress and improving care standards
- Determine new payment models for cancer care to be more affordable and accessible
Some of these standards will be more easily achieved than others. Goals like overhauling the costs of cancer treatment and how patients can better afford treatment will likely take many years of dedicated research and collaboration across many fields. But overall, the intent is to continue to improve the healthcare system to ensure that all cancer patients, regardless of their age or financial means, get the same, high quality care. As noted in these standards, a big portion of improving cancer care lies with the patients.
Making Informed Decisions
With their healthcare team, patients and their loved ones can determine the best treatment plan and supportive care needed that matches the patient’s goals and wishes. Empowering patients to do so requires participation from both the medical team and the patients themselves. This empowerment and active participation can start with oncology appointments and being sure to make the most of them with some simple steps.
Prepare Questions Ahead of Time
The best way to be prepared for a meeting with the oncologist is to come with a list of questions. Questions can be as simple as asking for more information around your diagnosis and prognosis, learning about your treatment options and the benefits and potential risks of each, or finding out how treatment may impact your daily life. Taking notes on what the doctor explains, as well as having a loved one or caregiver at the appointments, can help ensure patients understand all the information. It will also be helpful with any additional research the patient does at home. Not being sure what to ask can come across to the oncologist like you are disengaged with your care, so preparing ahead of time is a great way to engage.
Ask for Clarification
As patients discuss treatment and other aspects of their cancer with their doctor, they should also be cognizant of what they may not understand. Doctors sometimes have a tendency to slip in medical jargon or details that may be confusing. It’s important for patients to always speak up and ask about anything they don’t understand. Simply nodding along or pretending to be on the same page will only complicate the treatment decision. Even if you feel like you understand what was explained, it can be helpful to repeat what the doctor detailed to ensure everyone is on the same page.
Be Aware of Phrasing
As patients trust their doctors with their lives, it can be easy to forget that they’re also human. Coming into an appointment angry or talking badly about other medical staff can set the wrong tone for the meeting and make it difficult to be productive. Also saying things with strong implications, like “I hate the thought of clinical trials” or a certain type of treatment, can deter the doctor from bringing up these options in the future. To create the best relationship with your doctor, patients should be aware of how they phrase any criticisms, fears or skepticism, so it doesn’t become a roadblock to receiving the best care or being properly informed.
Working Together to Improve Care
Any kind of healthcare, including cancer treatment and support through survivorship, will require active participation from both doctors and patients to truly improve. Various health agencies, like the Institute of Medicine, have already been pursuing change to continuously improve standards and overall quality of care.
Patients can also help strive for these standards and improvements as well, by engaging with their medical team and taking the time to become well-educated in their diagnosis and treatment options. By working together, the scope of cancer care can change for the better and help everyone achieve quality, affordable, safe treatment for years to come.