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Health Care Agents: Appointing One and Being One

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

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.

Take the time you need to get the information that you feel is necessary to make a thoughtful decision. There may be no "right" decision. You can only make the best decision that you can under the circumstances.

What if the doctor refuses to follow my directions?

In most states care providers can refuse to honor advance directives (directives communicated by the agent or a living will) for moral or religious reasons. Some of those states require that care providers remove themselves from the case and transfer care of the patient to someone who will honor the patient's request. But in practice, a healthcare professional's refusal to honor an advance directive can cause a new set of issues. For example, it may be difficult to arrange the patient's transfer to another physician or facility.

A refusal to stop treatment that stems from a misunderstanding of the law or medical ethics might be resolved by supplying the provider withthe correct information. In other instances a care provider may feel that the patient's choice conflicts with his or her professional responsibilities or personal moral values. Many medical facilities have ethics committees that might help to resolve disputes over patients' wishes. In extreme cases legal action may be required.

A possible way to avoid such conflicts is to speak about the patient's wishes with the physician when you discuss other issues related to the patient's condition or treatment. This discussion will give you an opportunity to find out something about the physician's perspective and values related to end-of-life decision making. If the physician is unresponsive when issues about patient's treatment wishes are raised, or expresses an unwillingness to honor the patient's wishes, you may want to transfer the patient to someone else's care before a conflict arises.

WebMD Medical Reference from the National Hospice and Palliative Care Organization

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