Although it can be difficult to have hard conversations regarding advance care planning, most people find it a relief to know they have voiced their preferences and laid the groundwork for decision making once it is complete. Coming up with an advanced care plan can be overwhelming, but it is important to take it step by step.
The first step is simply gaining a realistic understanding of your current health status. You may be in generally good health, despite having several medical conditions such as high blood pressure or osteoarthritis. You may be doing well now but have a chronic, progressive, ultimately fatal illness such as Alzheimer’s disease or metastatic colon cancer. You may be frail because of multiple interacting chronic conditions or one disease that has widespread effects on your daily activities and health. Or you may have a serious advanced illness, such as end-stage heart failure.
Knowing which of these scenarios best characterizes your current situation and how your health is likely to evolve over the next several years is likely to affect what goals are most important to you. Many people who are in generally good health would favor life-prolonging therapy in the event of any new, acute medical problem such as pneumonia or a heart attack.
Some people with progressive, chronic illness also favor life-prolonging therapy in the event of a new problem or worsening of their chronic condition; others regard their daily functioning as of paramount concern. Many people who are frail are primarily concerned with retaining their independence and maximizing their quality of life; because their frailty may become more severe with aggressive medical treatments, they may prefer to limit such treatment. Finally, people in the final stage of a serious illness—whether metastatic cancer, end-stage heart disease, or advanced Alzheimer’s disease—often wish comfort to be the overriding aim of medical treatment. Accordingly, they would decline CPR, admission to an intensive care unit, surgery, or other invasive treatment in the event of an acute illness.
The best way to understand your diagnosis and prognosis is to talk to your doctor about your health. Following are some useful questions to ask in gathering information:
- What is the usual course of this condition?
- What is known about it, and what is unknown?
- What are my chances of recovery?
- What will the new normal be after recovery?
- What are the chances that I’ll be worse off?
- What will a (recommended) test tell you? Will it make any difference to my plan of care?
- How will a (recommended) treatment affect my functioning?
- Are there other possible treatments?
- What side effects will I likely experience?
- What will life be like after this treatment?
- If pain or discomfort is involved, how will that be managed?
For more information on the best ways to communicate your healthcare preferences, read Advance Care Planning, a Special Health Report from Harvard Medical School
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