What Quality of Care Should Mean During Cancer Treatment
When you begin treating your cancer, you’re stepping into a new world, and you might not know what to expect—from your caregivers, from your medical team, or even from yourself. Often, things can feel like such an emergency that it’s hard to apply the same standards you ordinarily would to the care you’re receiving.
Learning to advocate for yourself (or learning who to trust to advocate for you) is huge during cancer treatment, and it can affect the quality of care you receive, so let’s explore some best practices for what you can reasonably expect from the people who are helping you along your treatment journey.
Agency, autonomy, and respect
On the most fundamental level, you should always feel heard and respected by every member of your care team. Good care means that you always feel well-informed about your medical options and are empowered to make decisions. Often, there is not just one option for treatment—there are choices, and you should be provided all the information you need to make the decision that feels right to you.
It’s a lot of pressure to be making huge choices like surgery versus chemo, or watch-and-wait versus radiation. You, as the patient, deserve help and support in making those decisions. In some situations, you want full autonomy, while in others, it’s valuable to share the burden of decision-making. Your providers and care team should involve whoever you want, whether it’s your partner, your children, your parents, or another member of your support network.
You also shouldn’t have to chase down medical instructions. Your doctors and nurses should be proactive with giving you directions and should make sure that you fully understand everything they are sharing with you. It’s perfectly okay to ask your doctor to take more time with you until you understand everything that’s being said. You deserve to feel confident and sure about the care you are receiving. If your provider isn’t willing or able to make sure you understand your treatment plan, it might be time to consider a different doctor.
You, your team, and advocacy
Your caregivers, doctors, nurses, nutritionists, mental health providers, and complementary therapy providers are all parts of your care team—and, in an ideal world, they will function as such. When each team member is careful to loop the others in and communicate when necessary, you receive high-quality, holistic care that takes all the different elements of your health and wellness into account. This is what you want. You should always feel like your medical team is an advocate for you and your family.
In a less-than-ideal circumstance, your care is siloed, and you have to remind your doctor that because you have X condition, the side effects of medication Y are debilitating for you. Or your home caregivers aren’t sure what kinds of foods you should be eating and avoiding because no one gave them any information.
If you, the cancer patient, are being pressed into quarterbacking all of your care details, it’s time to advocate for yourself, because you need that time and energy to rest and recover. You can and should expect that your team works as a team, and if they aren’t, you have a few options.
- Changing providers
Sometimes, a talented clinician doesn’t have a great bedside manner or isn’t an effective communicator. You deserve to feel seen and cared for as a whole person, and if that isn’t happening, it is always your right to look elsewhere for treatment.
Speaking up for yourself can be empowering. If you feel up to it, consider telling your doctor (or nurse, or caregiver, etc.) that you’ve been feeling unheard, that you aren’t clear about the plan going forward, or that you need more support than they’ve been offering.
- Assigning a caregiver as your advocate
If you’d rather have a partner, family member, or friend speak up on your behalf, let them know exactly what you want from your care that you haven’t been getting. Be specific and let them advocate for you.
- Care resources
Your Care Coach, or a mentor or peer from one of our partner organizations can help you navigate the tricky waters of asking for what you need during treatment.
- Patient resources
The information your provider gives you about your condition, treatment, and side effects should be accessible and easily understood. It is your doctor’s job to translate complex medical jargon into language that you can grasp—it’s not your job to become a doctor so you can figure out what they’re saying. Information should be clear, concise, and offered in layperson’s language that you don’t need a medical background to understand.
Your nurses can be excellent sources of help here, filling in knowledge gaps and helping you grasp the details of what your doctors say. Many hospitals also have digital patient resource libraries, which are wonderful sources of information on topics ranging from how to pay your bill online to how to perform home injections of medication.
Asking for what you need
It’s common for people to feel intimidated by doctors and medical staff. Too often, patients are unhappy with their care, but are nervous to speak up for themselves or don’t realize that they can and should be receiving better treatment. Learning to speak up for yourself is a survival strategy, and if you feel like you aren’t getting proper care for any reason, the first thing to do is to talk to someone you trust. It is so important that you feel heard, informed, and respected throughout your treatment, and if you don’t, they can help you figure out a way forward.
The content on this website is intended to provide the best possible information for you, but should not be considered—or used as a substitute for—medical advice. If you have questions about your diagnosis or treatment, please contact your health care provider(s). For questions or comments about this content, please email us at [email protected].