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Self-advocacy

All patients are entitled to be in control of their own care, and all patients have the right to make life decisions without undue influence or control by others. All patients should have self-advocacy. Every time a person speaks up for themselves to gain more information or to resolve a problem, they are practicing self-advocacy.

Patient/self-advocacy encourages patients to take a more active role in their own care. It is a patient’s right and responsibility to become knowledgeable of the services available to them for their medical care.

As the medical field has become more complex and very busy, patients have had to become stronger self-advocates for their own care and for therapy access in their own individual cases. Patients should know their rights, and be willing to be proactive in their care. In all medical situations, patients must be given, must read, and must sign a medical consent before procedures, tests or surgery. If, as a patient, you do not understand what your care entails, it is okay to ask for the time to be clear no matter how long that may take, ask your questions. The simple act of asking questions and fully understanding what will be done in your care is an act of self-advocacy. Through being one’s own advocate there is patient empowerment.

Taking Control

Communication
Throughout the course of your illness, keep track of all questions that come to mind. Write them down, because eventually you, your family, and your friends are going to want answers. Put the two or three most important questions at the top of your list, since time with your doctors or nurses may be limited. Also list anything that occurs to you, symptoms, odd feelings, or anything you find out of the ordinary. Make sure a member of your medical team reads all of your questions and concerns, because he or she may notice something that is important that you have overlooked.

It is helpful to have a member of your family or a close friend accompany you to the clinic to help you ask questions and understand and remember answers. It can also be helpful to write down the answers to your questions.

Participation in Your Care
Never underestimate the importance of attitude. You are a partner in your treatment so speak up! Work closely with your doctor, ask questions and explore all of our options. If you have concerns about your physician, discuss them. If these concerns cannot be resolved, ask for a referral to another doctor. Many people also find it helpful to ask their doctor if they can speak with other patients that the doctor has treated, to know how that person felt, and find out what that person may have done to help them get through treatments and dealing with the illness.

Choosing a Doctor
Your family doctor will refer a specialist who is likely a medical oncologist, hematologist or hematologic oncologist. Before agreeing to treatment by a doctor or clinic, be certain that your medical and personal needs will be met. Before you start therapy, you may want a second opinion about the diagnosis and treatment plan. If you opt for a second opinion, remember that you should have a complete copy of your medical records (original x-rays, pathology, scans, and reports) delivered to the consulting doctor, preferably before your appointment. It is generally best to get copies of all of these materials and deliver them yourself. A second opinion is not considered adequate unless the tumour sample is reviewed by another pathologist, an expert in lymphoma. Your doctor can often recommend an oncologist you can visit to get a second opinion.

Clinical trials for new therapies may be an option for you, ask your doctor or nurse practitioner what is available to you before you finalize your treatment options.

What are my Rights as a Patient?
Comfort with your healthcare team and peace of mind can be the most important reason for a second opinion. You have the right to get a second opinion. Doctors interpret things differently and communicate to their patients differently. Even if you are absolutely comfortable with your physician, but your initial diagnosis leaves little hope for recovery, another opinion may be important to you and could perhaps change things for the better. Doctors specialize in different areas, but even if you are seeing a specialist for your cancer type, you can get another qualified opinion to confirm that the diagnosis is correct in all aspects. A tumour declared inoperable by one surgeon may be operable by another. Different doctors have had past successes with different treatments or combinations of treatments.

Additional medical opinions may provide alternative treatment options. And with new treatments and clinical trials being constantly funded and approved, you may find someone who can give you guidance in this area.

If you would like more support or information on your hospital policies, you can contact the Hospital Director, Hospital Ombudsperson, Patient Liaison Department or the Social Work Department.

Click here to download the Lymphoma Patient Charter of Rights. This was created by an international committee of patient groups and doctors to help you understand the rights you have within the healthcare system.