What should your doctor know about you?
Cancer treatment is tailored to your individual circumstances. Likewise, for effective teamwork, the relationship between you and your doctor also must be based on your situation. You probably will want your doctor to know that you are “not just another cancer patient”—your lifestyle and your hopes have a special importance for you.
Types of personal information that may be helpful to your doctor:
- Your type of work and the degree of physical work or mental stress it involves.
- Close relatives who have had cancer, and their cancer types.
- An idea of how much you know about cancer and its treatment.
- How much you are affected by family problems, money problems, work-related stress, or other issues.
- Your hobbies and other interests.
- Your goals for your quality of life during and after treatment.
- Whether you might want to have children in the future.
- Any important cultural beliefs.
If you prefer that some of the information not go beyond your doctor, request that the doctor not write it down. (Once information is entered in your medical records, it may be available to parties such as insurance carriers and others.)
What doctors wish their patients knew
Doctors are human. They have feelings, stresses, hopes, and needs.
They’re only human. They see many patients in a week’s time. Sometimes it’s difficult to remember details about a specific patient’s case if the medical chart isn’t readily available. Sometimes they may not be able to answer a particular question because there may not be an answer, or at least no answer now. Just as cancer treatment is individualized, your response to that treatment also is individualized.
Doctors want to know your medical preferences. How can you help ensure that your preferences are honored?
It might be helpful to choose one person to help you communicate your needs. If you want a family member or friend to help you communicate, discuss this role with that person early on and tell your health care team how you want this person involved. Having many people who communicate different messages is confusing and may make it harder to work with your team to make decisions and solve problems.
Whether you have cancer or not, you can’t predict the future. But each of us should think about how decisions should be made and who should make them if we become too ill to do so ourselves. Your doctor or hospital can give you information on preparing a document, called an advance health directive, that is legally recognized in your state. Common forms of this document are the durable power of attorney (also known as the health care proxy) and the “living will.” Many people have questions about these documents, such as:
What is a durable power of attorney? A durable power of attorney is a legal document that lets you appoint someone to speak for you. It allows you to transfer your legal right to make a health decision to someone you choose as your “agent” or “proxy.” “Durable” means that your agent can make decisions for you only when you become unable to do so for yourself. Your agent need not be an attorney; most people choose a close family member or friend.
Why would I need a durable power of attorney? A durable power of attorney lets you appoint someone you trust to decide about your medical treatment if you become unable to decide for yourself. You can give the person you choose as little or as much authority as you want. You can allow your agent to decide about all of your health care, or only certain treatments. You may also give your agent instructions that he or she has to follow.
What is a living will? A living will is a document that gives specific instructions about health care treatment. It is generally used to state your wishes about life-sustaining treatment under certain conditions. A living will requires that you know in advance all of the decisions that may arise. In contrast, the health care proxy allows you to choose someone you trust to make treatment decisions on your behalf. If you complete both a living will and a health care proxy form, the living will gives instructions for your health care agent—it will guide his or her decisions. A living will is not as effective as a durable power of attorney because a living will simply states your preferences to your doctor. A durable power of attorney gives legal authority to a person—not a piece of paper—to act in your place and be your advocate.
What if I change my mind? It is easy to cancel your advance health directive or change any of your instructions. Just fill out a new form. In addition, you can require that your directive expire on a given date.
Who should get a copy of my advance health directive? Give a copy to the person you have chosen to represent you (who may be called your health care proxy or agent), your doctors, and any other family members or friends you want. You may also give a copy to your lawyer. Keep a copy with your important papers, but not in a bank safety deposit box, so that others can find it if necessary.
When should I complete an advance health directive? Appointing someone to be your agent is a very serious decision, and requires some thought and discussion. Complete your health care proxy in advance, not just when you are planning to enter the hospital.
Will my doctor or hospital require me to have a durable power of attorney or a living will? Completing an advance health directive is voluntary. No one can require you to do so.
What is POLST? POLST stands for Physician Orders for Life Sustaining Treatment. POLST is a physician order that is recognized and honored in all treatment settings. It is portable, which means that it goes with the patient. It gives directions or orders for a range of medical treatments such as orders for code status; this means whether or not you want to have cardiopulmonary resuscitation done (also known as CPR). It also allows for choices about nutrition, hydration, intubation, mechanical ventilation, and antibiotics. POLST does not replace an advance directive but is intended to supplement it.
You may never become unable to make your own health care decisions, but you can feel reassured and have peace of mind by providing for the possibility.
How much teamwork do you want?
Some survivors are better able to deal with cancer by leaving most of the information and decision making to their doctor. For these people, having too much knowledge and participating in medical choices is very stressful, and (for them) it may make things more difficult. Others cope by learning all they can about their cancer and its treatment. It is OK to be in either group. Only you know the best way for you to cope. Most survivors are somewhere in between the two categories described above. Sometimes, the same person may want different amounts of information at different times during their cancer experience.
It is important to let your loved ones, doctors, and other team members know how much you want to be informed about your cancer, its treatment, and your health outlook (prognosis). They often look for subtle clues or signals from you. Sometimes they don’t know what to do about keeping you informed. Be open with them. Tell them clearly how much information you want. If your needs change, tell them so.
On the other hand, sometimes loved ones may want to know more about the medical treatment and situation than you do. This can put your doctor in the difficult position of needing to safeguard your privacy while being asked by family members for more information. If you’re concerned, you have the right to say who should know what kinds of information. You need to make sure your doctor understands your preferences about how much can be discussed with loved ones.
You can make it less difficult for them if you discuss these issues and tell your doctor and your loved ones to what extent the doctor has your permission to share information with them.