Handbook for Mortals : Learning about specific illnesses : Concerns about heart disease

More Americans will die from diseases of the heart and the circulatory system than from any other cause. For most, the death will seem sudden, even if the person has been ill for some time. Most people with serious heart and blood vessel disease have episodes of serious illness - heart attacks or heart failure, for example - and then long periods of "nothing changing."

Usually with heart disease, dying will be rather sudden when it finally happens. To have dying unfold in the way you want, you really must plan ahead. You need to make key decisions in advance and you need to ensure that you have a capable and experienced doctor and care team.

Severe heart disease once killed people quickly. Now, most of us will live a long time after onset. A few will even get a chance to try a transplant. If you might be one, you will need to do even more thorough planning, both for survival through transplant and the more likely event of dying before transplant is attempted.

By the time you realize that heart disease might well be the cause of your death, you will already have heard about improving diet and exercise, stopping smoking, and controlling blood pressure and fats in the blood. However, you are not particularly likely to have heard from a doctor about how your disease is likely to affect you over time. Many doctors haven't really thought about it - they work on the problem you have right now and get you "back on your feet," then don't think much about how your life is going until you are sick again.

This leads to all kinds of misfortunes for many people with bad heart disease. No one ever warns them that they might live a long time, or might be gone rather suddenly. You will think that you will get a decent warning of when your time is at hand, just like your Aunt Bertha with breast cancer or cousin Harry with kidney failure. Not so. You may become too short of breath to walk stairs, or you may stay relatively well. Either way, you are likely to end up dying within a few days of being quite stable in your "ordinary" health.

Society has not really taken the opportunity to think about what it would be to live well with the high risk of sudden death. Certainly, you are not likely to want to stop all treatment. Ongoing treatment and treatments of bad episodes keep you pretty comfortable and functional. On the other hand, you probably would like to avoid dying on a ventilator in intensive care. And you want that decent opportunity to say your farewells and make peace with your life.

Serious heart disease is a signal that you really should make plans in advance for the kinds of sudden events that can be emergencies. Your family needs to know whether you want the emergency rescue team called, whether you want resuscitation tried, and whether you want intensive care stopped if it seems that you have lost the ability to live outside of a hospital or nursing home. You should write down instructions for your family and put them in obvious places in your home (e.g., on the refrigerator or telephone). Also be sure your instructions are filed in your doctor's medical records and your records at the local hospital.

Dying with heart disease requires that you say "farewell" in a "can't be sure" mode. Rather than the final farewells that movies portray as people die of violence or cancer, you need to draw people together and to finish your life work in a way that acknowledges that you might still live a long time, or you might not. Perhaps you can make a video for the grandchildren; that is an enduring gift. Or you could write some letters and put them with your will. Most people respond pretty well to an open acknowledgment of the uncertainty of the situation. Perhaps you can call a brother whom you have not seen in some time and say:

People with heart disease generally do not have serious problems with pain, but you may well be troubled with fatigue and have little tolerance for exercise. Some people do have chest pain, but that can usually be eased with drugs. At the end, you might have serious shortness of breath.

One major decision that you should make in advance, if possible, will be whether to use a machine that will take over breathing (a ventilator or respirator). Sometimes, the odds of that working are so low that the doctor will advise against it. Sometimes the ventilator might well work in relieving the shortness of breath, but you may be too weak to live without the ventilator. You deserve the chance to talk this over with your doctor and to make plans.

Because these decisions are difficult, you really need a doctor you can trust, who has the skills necessary both to rescue you from episodes of shortness of breath and to help you when death will be the outcome. Especially, you need to ask the doctor explicitly whether he or she will be willing to use opioids or other drugs to ensure that you will not feel a sense of suffocation if there ever is a time when you stop a ventilator or choose not to use it. If the doctor is not willing or has never faced such a situation, you might do well to find another doctor, or at least a good hospice program with a nurse who will stand by you. You also need to be sure that your family is aware of your decisions and will support them.

You need to move as much treatment as you can into your home (including into a nursing home, if that is where you live). To do this you need:

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Handbook for Mortals book cover Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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