Talking with Your Doctor about End-of-Life Issues
The physician may be focused on only one or two aspects of a patient’s medical condition and not consider themselves involved in the “big picture.” The doctor may not want to appear “negative” by bringing up an unpopular subject. He or she may view having such discussions as an admission of “failure.” (It is sad, but still true sometimes.)
Practically, visit times are short and may not seem to allow enough time for an adequate discussion. And the physician may wrongly assume that everyone “already knows” how things are progressing and that, because no one mentions it, no one must want to talk about it.
On the other hand, the patient and his family may truly not realize or accept how the patient’s condition is progressing over time. Patients may not report all of the symptoms they are having, or they may not know which of many are most important. Sometimes information does not come back accurately from physician visits because of a lack of understanding or not knowing which questions should be asked. These are several reasons why there are now many physicians who specialize in the area of Palliative Care and Symptom management. These physicians and their teams work with physicians who care for patients with very advanced diseases. They also help with communication; assuring that symptoms are managed, that concerns are addressed; and generally anticipating and planning for the progression of disease.
Regardless, there is no substitute for developing a good and comfortable relationship with one’s physicians. It is important to try and build a relationship where the communication is respectful, honest, and complete, where both patient/family and physicians are open to any question and each question deserves a truthful and satisfactory answer.
If you feel that you have not been brought to fully understand your health situation (or that of a loved one who has asked you to be involved—especially if you may have to help with decisions if that person’s health deteriorates), I would make the following suggestions:
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If you feel that your concerns are beyond what may be covered in a “normal” physician visit, ask if you can schedule extra time or time outside of the doctor’s busy appt schedule. Before the visit, try to:
- Solidify what you know of the underlying health condition(s)—and identify what you feel you don’t yet know.
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List concerns you have, such as:
- overall deterioration
- symptoms you’ve noticed.
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Think of specific questions you have about:
- your health condition(s)
- available treatments
- prognosis
- how symptoms and the progression of the disease should be managed.
Examples of questions you might ask:
- “Can I expect any pain?”
- “Will the shortness of breath get worse?”
- “If it does, what can we do?”
- “Are there any other treatments?”
- “Will I be able to continue living on my own?”
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Finally, assure that you have a good idea of what you want to get out of the visit/discussion. Then, when the opportunity comes, ask all the questions you need to until you understand the answers and the implications.
- Communicate within the family or have all concerned members of the family present for such discussions.
- If your doctor cannot, will not, or does not answer to your satisfaction, seek another professional who will.
For more information:
Go to the COPD (Chronic Obstructive Pulmonary Disease) health topic.