If you have an illness that requires long-term care, be prepared to be your own advocate. Below are suggestions that might help you improve communication with your care providers and improve the quality of your care.
• Use your support system as needed; do not become overwhelmed.
• Research your diagnosis and treatment options.
• Take advantage of resources and people who may be able to assist. For example, organizations such as the American Cancer Society have extensive information available online or in pamphlets. A charge nurse or social worker may be able to assist if you are having trouble with coordination of care.
• Social service agencies are skilled at identifying available resources and helping you tap into these resources. For example, they can assist with medical issues and disability applications. They are generally knowledgeable about federal and state guidelines.
• It is very beneficial for you, your loved ones and your medical care team if you have “an advance health care directive, also known as living will, personal directive, advance directive, medical directive or advance decision, [which] is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. In the U.S., it has a legal status in itself, whereas in some countries, it is legally persuasive without being a legal document.” [Source:] http://avl.mx/3rl.
• Palliative care is offered through hospitals and medical offices for individuals dealing with long-term disease or chronic illness. The medical specialists will help ease your suffering by navigating your health care choices. Most insurance companies and Medicare will pay for palliative care. You may have your palliative care plans filed in your electronic medical records. [More info:] http://avl.mx/3rm.
• In most states [including North Carolina], you can call United Way’s 211 number [dial 2-1-1 or visit NC211.org]. They will help increase your awareness of available resources throughout the state.
• For chronic pain, see a pain-management specialist.
• To avoid confusion, document issues using electronic communications with your care providers. Keep your emotions out of any correspondence and stay on point.
• Understand your medications. Know the benefits and the side effects so that you can make informed decisions about medication options that are right for you.
• If your prescriptions are prohibitively expensive, your physician may work with the pharmaceutical company and provide you free or lower-cost prescriptions.
• Consider alternative care such as homeopathy, acupuncture, massage, diet and exercise programs. Any of these choices would be outstanding. [More info:] http://avl.mx/3rn.
• If you have Medicare, the staff will help you with an insurance policy that will best meet your medical and financial needs. Medicare will do conference calls with you and your prescription drug carrier and negotiate your prescription obstacles. For example, my insurance company was refusing to cover the total number a medicines I needed for the month. Medicare worked with me to straighten out this problem.
All of the above suggestions have worked well for me over the years. I strongly encourage you to become knowledgeable about your health so that you are in a position to participate in the decision-making process. Knowledge allows one to self-advocate.
— Anne Catherine Gibbons