There are many decisions that you, or you and your family together with your doctor, must make about your healthcare. It may be better to think about these decisions even before you may have to be hospitalized.
Some decisions are as simple as choosing items from a menu, but some are very difficult, such as deciding whether to agree to an operation. Some decisions may require soul searching, such as deciding whether to be placed on a life-support system or have certain life support systems removed if they are no longer effective, or if they become too burdensome in comparison to their benefits.
Difficult questions arise at the hospital so often, in fact, that it seemed to us that you would benefit from a look at some examples of the decisions that patients and families sometimes face.
Most people become a bit timid in strange situations, especially when sick and perhaps frightened. It is your right and even your duty to yourself to understand as much about your medical care as you can. This means asking questions! Your doctor should be the primary source of many answers, since you will be making a lot of decisions together. Ask your doctor to explain what you don't understand. Other members of the team caring for you also are a source of answers; in different ways, nurses, social workers and chaplains all can help answer your questions.
What is Informed Consent?
"Informed consent" means that you have been given sufficient information about a proposed course of treatment, have thought about it, and consented to the procedure or treatment planned for you. Here is a list of some questions you might ask:
- Why is this necessary now?
- Are there any reasonable alternatives?
- What outcome should I expect?
- What are the risks, complications, benefits and burdens involved?
- What will it be like to have this treatment now?
This means asking questions. Once you understand the benefits and burdens of the treatment suggested by your doctor, then, based on your own values, you can weigh the hoped-for benefits of that treatment along with the possible burdens.
What are Life Support Systems?
People tend to think of life support systems as "machines that keep you alive," such as a ventilator that breathes for you when you can't breathe on your own. In the broad sense, however, a life support system can be something as simple as an I.V. that delivers nourishment to you. Many of us have heard about "people being kept alive on machines" and have decided that we want no part of that. The fact is, however, that life support systems are used many times every day to help people over an illness and to return them to good health. Ventilators, for example, are frequently used after surgery to support patients' breathing until they wake up enough to breathe on their own.
Unfortunately, situations can occur in the course of a serious illness that may require you, or your family, to make a decision about "sustaining life." Although most of us consider life itself to be sacred and of very great value, there may come a time when the burdens of treatment (e.g., pain, suffering and emotional cost to the patient and family) outweigh either the actual or potential benefits. In these situations, continuing treatment may merely extend the dying process and may interfere with the expression of religious and spiritual values held by some patients. When it is clear to everyone that there is no chance for meaningful survival despite all that is being done, or that continuing treatment will be too burdensome in one way or another, many people would prefer not to be placed on, or kept on, life-sustaining systems. Different people consider and weigh benefits and burdens differently—according to their own experiences, religious beliefs, and circumstances. What is an acceptable treatment for one person in one situation may be unacceptable for another person in a similar situation. We respect such differences and will honor all reasonable requests.
Sometimes it is not clear whether a patient will benefit from certain life-sustaining treatments. In these situations, it often is helpful to start the treatment. If it later proves to be of little or no benefit to the patient, then the treatment can be discontinued.
Deciding to forego certain life-sustaining measures in no way means that all medical care stops. In fact, supportive medical care, with patient comfort as the primary concern, may become even more intensive at this time.
Decisions such as these require a lot of time and answers to a lot of questions. Few people make good decisions when they feel pressured and rushed, so it's helpful to think about these possible dilemmas before they occur.
What is a "Code O"?
A "Code O" or "Code" is a set of procedures carried out on a patient whose heart and/or lungs have suddenly stopped functioning. This resuscitation requires external compression over the breast bone to stimulate the heart, electric shock to the heart, placing a tube in the windpipe and breathing for the patient, using drugs to restore blood pressure, etc. This type of resuscitation clearly uses life-support systems in an all-out effort to SAVE a life. There are situations, of course, where this is not appropriate. For example, at the end of a terminal illness, the patient or family members may not want these measures performed, since such resuscitation would clearly offer no benefit to the patient. Your doctor may bring up the question of whether a Code O should be performed for you, or you may feel free to ask this at any time. It is important that any such decision on your part be discussed with your family and close friends whenever this is possible.
How Do I Make My Wishes Known?
It is the policy of our hospital to respect the right of patients to take part in their treatment decisions; in fact, we encourage it. If you are able to make your own decisions, then you will be asked to give informed consent to any planned treatments. If you no longer are able to make these decisions, then someone else will make them on your behalf.
You may want to appoint someone to make medical treatment decisions for you, in the event that some day you may not be able to make those decisions yourself. Michigan law provides that an individual may appoint a patient advocate and may sign a Durable Power of Attorney for Healthcare. The patient advocate may be a family member or a close friend. What is important is that you talk to your advocate so that he/she understands your values and treatment preferences. Then your advocate can make informed decisions, weighing the benefits and burdens of treatment in the same way that you would weigh them.
Copies of your Durable Power of Attorney for Healthcare should be given to those close to you and to your doctor. You also should bring a copy with you when you are admitted to the hospital. In fact, all hospitals now are required to ask their patients whether or not they have such a document and, if they do, it will be entered into the medical record.
If you are not able to make healthcare decisions on your own and if a patient advocate has not been chosen in advance, then the physician will ask members of your family to make the medical treatment decisions on your behalf. Ideally, your family members will be able to tell the physician what you would have wanted under these circumstances. Your family will feel more comfortable if you have talked with them in advance about your wishes. Some people even wish to put their wishes in writing, and this is called a "living will."
What If I Change My Mind?
Despite the best predictions, conditions do change. You may change a decision at any time, either orally or in writing.
What If I Wish to Donate My Organs?
Making your wishes known to your family will help them make this decision. You may want to consider whether or not to fill out an organ donor card. By law, at the time of death, hospital personnel are required to ask family members for permission to remove organs suitable for transplantation. Even if you have a donor card, they still will request you family's permission. You can help save other lives by impressing upon your family the importance of your wish to donate organs.
What If I Have to Make a Decision for My Loved Ones?
Ideally you—as a family member or close friend—would have had a chance to talk about these issues with your loved one. If so, by letting your doctor know your loved one's preferences, his or her wishes could be carried out with respect for his or her personal dignity. If you have not discussed these decisions with your loved one, then you need to think seriously about the values that were important to him or her. A nurse, social worker, chaplain, pastor or doctor can help you reflect on these values to decide what your loved one might choose to do, if he or she still were able to express his or her preferences. The decision should express as closely as possible what the patient would choose. But, even if your knowledge of the patient's wishes for a given situation is very limited, this need not prevent you from making thoughtful decisions, based on your own careful judgment of what the patient would choose.
Some decisions are difficult, but they can be made easier by thoughtful discussion. We hope this brief look at some difficult issues has helped you give some thought to problems you may not have considered before. Unfortunately, dilemmas such as these are facts of life, and we cannot ignore them. We hope that spending some time thinking about these issues, and discussing them with your doctor and others, will help you make the decision that is best for you.
Developed by the Borgess Medical Center Biomedical Ethics Committee. Revised in conjunction with the Bronson Methodist Hospital Biomedical Ethics Committee.