Many important decisions need to be made when a person is diagnosed with a terminal illness. Decisions include:
The person and their family have the right to refuse treatment. And in most cases, healthcare providers will agree and follow their wishes. Sometimes the healthcare team may ask for more discussion. This is often done when the family makes decisions without a healthcare proxy or advance directive. Or when there are disagreements among family members. Senior doctors and experts in medical ethics and legal medicine may be included in the discussion. This often helps to reach an agreement that is in line with the person’s wishes.
Many families want their loved ones to die at home in their natural and most comfortable setting. Others don’t feel they can emotionally handle the death in their home. Include all family members in this important decision. Not all decisions have to be made at once, and they can be reversed. In some cases, families think they want to be at home and then find the hospital more comfortable. Other families may choose to be in the hospital and then find that they and their loved one are more comfortable at home. Time and circumstances can help to make these decisions. Ask as many questions as possible to get the information needed to make the best decision for your family.
Adults can prepare an advance directive. These are documents that are used if a person loses the ability to make decisions. They are also used if a person can’t express their wishes due to an injury or disease. People younger than 18 may prepare an advance directive. But in most cases, parents or healthcare providers are not required by law to honor it.
A living will covers healthcare decisions when you are terminally ill or permanently unconscious.
Durable power of attorney for healthcare allows a person to name an agent or a substitute person (proxy). The agent or proxy will then make healthcare decisions if the person can't do so.
A do not resuscitate order is a formal request by a person or their family to not take extreme measures to save their life. A DNR order is often reserved for a person who is near death or has a terminal illness. It is used when a person would not have a high quality of life or a long time before death, even if they were resuscitated. DNR orders can detail how much medical intervention a person wants before death (for example, no use of cardiac medicines, no oxygen, or no chest compressions). These details need to be discussed with and written by a healthcare provider. A DNR is also needed for home.
An autopsy is an exam of the organs or tissues of the body after death. An autopsy is often used to figure out the cause of death. But it may also be done to research the fatal disease for future diagnosis, treatment, and prevention strategies. Or it may be done to improve the quality of care in the hospital or for medical teaching. The decision to have an autopsy is a personal one. It should be made when the family is ready. Often an autopsy may help the family with closure. An autopsy can also provide important information for family members. This is the case when a loved one has a rare disease or cancer. Or when a loved one has a condition that has a genetic cause. If genetic testing has not already been done, or is not available storing DNA samples for future use (called DNA banking) may provide an option for testing in the future.
if possible. Laws governing organ donation vary slightly from state to state. Your healthcare provider will be able to tell you about these options.
Palliative care is care aimed at comfort rather than cure and treatment. Hospice is a type of palliative care that provides services to improve the quality of life for the family and their loved one. Hospice stresses peace, comfort, and dignity.