Be an informed patient
Take an active role in your health care
You and your family play an important role in making sure that your health care needs are met as successfully and safely as possible. This includes:
- Thinking about your health care wishes including how you want to get information and who should be involved in decisions about your treatment
- Knowing what questions to ask—and information to give—your doctor and other providers
- Understanding your treatment options and working with your doctor to decide which option is best
- Planning ahead for unexpected medical events and end-of-life care
- Advocating for improvements at your local hospital
Talk with your provider | Share in decisions | Document your preferences | Be an advocate
Communicate with your provider
Patients, as much as the professionals who treat them, are critical to maintaining good health. You know your symptoms best and are usually the one in charge of following a doctor's treatment plan for your care. Still, it can be hard to talk easily with your health care provider and ask questions when your health needs are complex, you are unfamiliar with medical terminology, and you have been told that ‘doctor knows best.’
If you find it hard to talk with your doctor or nurse practitioner, try some of these strategies:
Share in treatment decisions
As a patient, you have the final say over how what medical care you want to receive or not. The best choices about your care are often made jointly between you and your providers. Health professionals have medical expertise to diagnose and treat your symptoms, and you know your body and preferences best. Together—and with the right planning tools—you and your care team can pursue the best course of care to meet your needs.
Here are some materials to help you approach decisions about medical care and assess options:
Make your health care preferences clear
People have different values and preferences when it comes to making decisions about their health care. For example, some patients may want to be more involved in their treatment decisions with their doctors than others. Or when seriously ill, some people want to live as long as possible through aggressive treatments, while others may be more concerned about the quality of their life during the time they have left.
Take steps to make sure that your wishes are respected and that you avoid unwanted care:
- Think about your health care preferences—for example, who do you want to make medical decisions on your behalf if you are unable to make them yourself? Are there circumstances under which you would not want to receive life-sustaining treatment?
- Talk about these preferences with your family, caregivers, and doctors
- Complete paperwork to document your wishes
- Make copies of the paperwork and give them to your doctor's office so they can be filed in your medical record. Also share them with family members or others who need to know about your preferences.
Once you’ve taken the time to think about and talk about your wishes, it’s important to write them into a document. Massachusetts has five key health care planning documents:
- Health Care Proxy
- Personal Directive
- Durable Power of Attorney
- Medical Orders for Life-Sustaining Treatment (MOLST)
- Comfort Care/Do Not Resuscitate Order (CC/DNR)
These are “living” documents that you can update at any time. Remember that your needs or preferences might change.
Learn more about these documents and how to talk about them with your health care providers at Honoring Choices Massachusetts.
For patients who want to focus on their end-of-life plans, try this “starter kit” from The Conversation Project, an acclaimed national effort dedicated to helping people talk about their wishes for care at the end of life.
Be a patient safety advocate
One of the best ways to influence health care practices is to join your hospital’s Patient Family Advisory Council (PFAC). These volunteer councils bring together patients, family members, and hospital staff to improve the care experience by involving those who know it best—the patients. Members may help inform hospital policies, contribute feedback, participate in research design, or lead improvement projects. Today, all Massachusetts hospitals are required to have a PFAC, and some have more than one. Learn more about the role PFACs play and how to get involved.
There may be other ways to get involved. For example, many Betsy Lehman Center projects benefit from input by patients and their families. Let us know if you might like to represent the patient perspective in a future initiative.