Guide Living With a Serious Illness

Educate Yourself, Ask Questions

The first step is to educate yourself about your disease. Ask your doctor for information, and use the Internet or local library to research more about it. The federal government offers many reliable websites with accurate and up-to-date information about an array of diseases. You can also turn to disease-based support and advocacy groups to learn more. Being an educated patient will help you to make informed choices that are the key to getting the kind of care you want.

• Ask questions. If you don't understand what your doctor is telling you, ask questions. Do not be embarrassed or intimidated. Your doctor wants you to understand your disease and its treatment -- and wants to know how you are coping as you move forward with decisions.
• Try not to rush into decisions. When your emotions are high and you are presented with complicated and sometimes confusing information, making decisions can be extremely difficult. Give yourself time to consider your needs and to reflect on your available choices.
• Turn to the supports your hospital has to offer. In addition to your doctor, chaplains, social workers, palliative care experts, nutritionists and nurses are specially trained as experts in working with very sick patients and their families.
• Request an interpreter. If English is not your first language, ask for a health interpreter, someone who is an expert at translating medical information. You have the right to an interpreter with almost every provider.

Downloadable Resource: Ask Questions and Be Informed (PDF)

Continuing Treatment with Advanced Illness

When you decide to pursue or continue treatments when your illness is advanced, you will want to ask questions about the benefits you are likely to gain from your treatment options. The American Cancer Society has published suggestions for questions that you or your family should ask your doctor before pursuing treatment for cancer, which may be used to explore treatment options for other serious illnesses as well.

• What are my treatment choices?
• Which treatment do you recommend, and why? Do I have other options?
• What is the purpose of the treatment: to cure the disease, to help me to live longer, or to relieve or prevent symptoms of the cancer?
• What side effects are likely to result from the treatment? What can I do to help reduce these side effects?
• Will I be in pain? How much? Can I handle the pain?
• Are you able to offer me the treatments I want?
• What are the chances that the treatment will be helpful? What are the risks associated with it? Will I have any control over what happens to me?
• What if I feel that I can no longer tolerate the treatment?
• Would a second opinion be helpful? Where can I get a second opinion before I start treatment?

Downloadable Resource: Questions About Your Treatment (PDF)

Limiting Surprises: Living With a Serious Illness

Living with a serious illness, you will want to limit your surprises about how your disease may progress should aggressive treatments not result in a cure. Treatments for disease can come with a great deal of risk that could include premature death or permanent disability. You will likely have to make decisions about whether you want to pursue additional treatments. In each case, you will need to consider the risks associated with treatments, and what you are likely to gain at a more advanced stage in your illness.

• What can I expect as this disease progresses? What kinds of symptoms will I experience?
• How long am I willing to pursue treatment given my condition and my prognosis?
• How do people at this stage of the disease respond to treatments?
• What are some of the challenges I am likely to face? Could I be injured or disabled as a result of this treatment?
• Will I be able to stop the treatment once it has begun should I change my mind?
• Could I talk to an ethicist, patient advocate or palliative care expert about some of the decisions I am facing or am likely to face?

The Reality of Hope

People with serious illness may choose aggressive treatment in the hope for a cure or to prolong their lives. While patients and their families may hope for the best, they may also want to engage in advance care planning should they face grave complications as a result of the treatment itself, or the difficult reality that a cure may no longer be an option. Read more at the Advance Care Planning guide.

For More Information

• American Cancer Society This site offers support, information and resources for people with cancer, including Treatment Decision Tools and Worksheets customized for a variety of different types of cancer.
• The Anatomy of Hope: How People Prevail in the Face of Illness by Dr. Jerome Groopman
• Center for Shared Decision Making Dartmouth-Hitchcock Medical Center offers a variety of online resources, including booklets, work sheets and videos, to help people make and track difficult health care decisions that come with advanced disease and illness.
• Handbook for Mortals: Guidance for People With Serious Illness This is a free, comprehensive resource for people living with a serious illness and for those who care for them, with information about caregiving, end-of-life decision making, and pain and symptom management.
• Healthfinder.gov A portal for accurate and trustworthy information about illness and disease, with links to many federal agencies and to public- and private-sector organizations.
• National Cancer Institute The nation's premier cancer research organization features peer-reviewed, evidence-based summaries on topics including adult and pediatric cancer treatment, supportive and palliative care, screening, prevention, genetics and complementary and alternative medicine.
• Ottawa Hospital Research Institute This site offers a variety of Patient Decision Aids including an online booklet, Understanding the Options, to help family members make treatment decisions for critically ill people in the ICU.
• Society of Critical Care Medicine This site includes an online resource on decision making in the ICU, including questions for family members to ask of providers and information about the kinds of decisions that are likely to be made.