Making Health Care Choices
Sick people and their families may feel swept along by the fatal illness and medical treatments, as if they have no control over the events. Sometimes, this sense of having no control is preferable to taking responsibility for thinking about what else might be done. People vary in the amount of information and involvement in decision making that they want and should usually be able to be as engaged as they want. Loved ones need to be satisfied that everything was done to enable the dying person to live as well and with as much dignity as possible while dying.
Honest, open communication between patient and doctor about the person's preferences for care at the end of life helps to ensure the best possible quality of life during a fatal illness. The doctor provides a candid assessment of the likelihood of recovery and disability during and after various treatment options, and the person tells the doctor and his family what he wants and does not want to experience. The person's health care decisions may include choosing a doctor and a system of care, stating his preferences for treatment and the limits he wants placed on that treatment, expressing wishes concerning where he wants to die and what he wants done when death is expected, and stating whether he wants to donate his organs after death.
Choosing a Doctor: When choosing a doctor, a person should ask about care at the end of life: Does the doctor have substantial experience caring for dying people? Does the doctor care for the person until death in all settings--hospital, nursing home, or home? Does the doctor treat symptoms fully (palliative care) at the end of life? Is the doctor familiar with the home health, physical therapy, and occupational therapy services in the community--who qualifies for them, how they are paid for, and how to help people and families get more intensive services when needed? In some cases, what a doctor may lack in experience is offset by a trusting, long-standing relationship that exists between the doctor and a patient and family and by the doctor's willingness to consult other experts.
Choosing a System of Care: A system of care includes a financing system, such as insurance policies and managed care, and a care delivery system, such as doctors, a hospital, a nursing home, and home health care agencies. Asking questions of doctors, nurses, other patients and families, social workers, and case managers can help a person find a good system of care: What treatments are available in the system? What information is available about the merits of possible treatments? How can a person talk to other patients and families who have been treated there? What experimental treatments are available? How have other patients done with these treatments? How are these treatments paid for?
Choosing Treatment Options: Often, the available choices are between dying sooner but remaining comfortable and attempting to live slightly longer by receiving aggressive therapy, which may increase discomfort and dependence. Nevertheless, dying people and their families may feel that they must try such therapies if any chance of prolonged survival exists, even when hope for a cure is unrealistic. Questions of philosophy, values, and religious beliefs come into play when such decisions are made by and for a dying person. People should discuss their wishes for end-of-life care well in advance of a crisis that makes such information critical.
A person nearing death is sometimes persuaded to try one last treatment, which often sacrifices the person's last few days to side effects without gaining quality time. The person and family should be skeptical of such treatments. In many cases, as a person nears death, the focus of care should shift entirely to providing comfort measures to ensure that the dying person does not suffer.
Some decisions, such as whether to allow resuscitation--the only treatment provided automatically in the hospital (unless specifically predecided otherwise)--are less significant than they seem. An order against attempting resuscitation makes sense for most people expected to die, and such a decision need not weigh heavily on the family. The person who is near death before the moment when the heart stops beating and breathing ceases (cardiopulmonary arrest) is not likely to benefit from a resuscitation attempt. Resuscitation efforts can be prohibited in advance directives (see Section 1, Chapter 9) or through discussion between a patient and doctor, with the doctor writing the needed order. Food and water given through tubes (artificial nutrition and hydration) are not often useful to a dying person and can also be prohibited in advance.
Other decisions may include the setting in which the dying person will spend his final days. For instance, the family may want to have the person at home--a familiar, supportive setting--and not in a hospital. Family members should insist that doctors and other caregivers help make specific plans for these preferences and honor them. In some cases, hospitalization may be explicitly declined.
Choosing to Donate Organs: The dying person may wish to donate his organs after death. This decision is best made with the family in accord, if possible. In general, people dying of a chronic illness can donate only corneas, skin, and bone. People who die more suddenly can donate more organs, such as kidneys, liver, heart, and lungs. To become an organ donor, the person usually needs only to sign a standard organ donor card and to let the doctor know of his wishes. Common concerns that may prevent some people from becoming organ donors can be allayed: Organ donation usually does not affect the appearance of the body at the funeral and does not cost the person or family any money. Also, organs are never taken until after death.
 See the sidebar Services to Know About.
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