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Health Care Agents - Appointing One and Being One

What do I need to know to make decisions? continued...

If the doctor says that the patient has a treatable condition, such as pneumonia, but this treatment cannot affect the underlying disease, such as advanced Alzheimer's disease, you may know that the patient would not want life prolonged under these circumstances. Or you might decide that because of other aspects of the patient's condition (for example, advanced cancer), further treatment would only prolong the patient's dying in an uncomfortable or painful condition.

It could be an appropriate decision to refrain from treating the pneumonia and concentrate only on treatments that would keep the patient comfortable. (Such treatments are commonly called palliative care.)

You also can ask the physician to describe how the patient's disease is likely to progress and what decisions are likely to be necessary at some point. For example, a patient with Alzheimer's disease eventually might stop eating or become unable to swallow.

You can begin to consider whether artificial nutrition and hydration should be given if that happens, and obtain specific information about these treatments. If someone is very sick, it is likely that at some point they will have cardiac or pulmonary arrest (their heart will stop beating or they will stop breathing). Start talking with the doctor early about whether or not a do-not-resuscitate (DNR) order should be written to prevent the use of cardiopulmonary resuscitation (CPR).

In discussing whether to withhold or withdraw particular treatments, you should also ask the physician about the care that the patient would continue to receive. You should expect a palliative care plan to be in place to manage any pain or discomfort. You can consider non-hospital options for the patient's care. For example, appropriate care might be delivered more effectively in a long-term care facility or it could be given at home with home-care support or hospice care.

If you need information from the doctor, ask for an appointment to meet and come prepared with specific questions. Write your questions down so that you do not forget any of them and you can make good use of the time. You can get information and other support from nurses, social workers, patient representatives, members of the ethics committee, and chaplains.

Medical decision-making is a process. You can make provisional decisions and change them later. For example, you can authorize a trial of treatment, and later, if the treatment is not having the intended benefit, direct that it be stopped. It is perfectly ethical and legal to stop a treatment that has been started if the treatment is of little or no benefit or is unwanted.

However, in practice, withdrawing a treatment can be psychologically more difficult for the caregivers and the agent. It can feel as if stopping the treatment causes the patient's death. In fact, the treatment may only prolong the dying process, rather than prevent the patient's eventual death or improve the patient's condition. In such a situation it can help to remember that the disease is the real cause of the patient's death, not stopping or withholding treatment. Sometimes withholding or withdrawing treatment does not result in the patient's immediate death, but may make the patient's dying more comfortable.

WebMD Medical Reference from the National Hospice and Palliative Care Organization

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