Important Decisions to Be Made in the Dying Process
Many important decisions need to be made when a person is diagnosed with a terminal illness. This is a disease that can't be treated and will lead to the person's death. These decisions can be difficult. If you have any questions, discuss them with your healthcare team. You may also want to talk with family, friends, a religious leader, social worker, or counselor.
Some of the decisions include:
Right to refuse treatment
The person has the right to refuse treatment. In most cases, healthcare providers will agree and follow their wishes. Sometimes the healthcare team may ask for more discussion with the person and their loved ones.
More discussion is often needed when the person can't express what they want, and the family has to make decisions without a healthcare proxy or advance directive. Or when there are disagreements among family members. Senior healthcare providers and experts in medical ethics and legal medicine may be included in the discussion. These talks often help make a plan that's in line with the person’s wishes.
Dying at home or in a hospital
Some people can decide where to receive end-of-life care. They may prefer to be at home or in a facility or hospital. Many families want their loved ones to die at home in their natural and most comfortable setting. Others don’t think they can emotionally handle end-of-life care and death at home. All family members should be part of this important decision.
Not all decisions have to be made at once, and choices may change. Sometimes 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 want to go home. Time and circumstances can help guide these decisions.
Ask as many questions as possible to get the information needed to make the best decision for your family. If a loved one is going to be cared for at home, the family should understand what care is needed and make sure they have the resources and time to provide that care.
Advance directives if age 18 or older
Adults can prepare an advance directive. These are documents that are used if a person becomes unable 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 do not, by law, have to honor it.
A living will covers healthcare decisions when you are terminally ill or permanently unconscious. It lists common treatments that you may or may not want. Some examples are tube feedings, dialysis, and use of a machine to help you breathe (a ventilator).
Medical power of attorney or healthcare proxy
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 medical decisions if the person can't do so. The person you choose must be 18 or older.
Do not resuscitate (DNR) order
A do not resuscitate (DNR) order is a written medical order. It is a legal request by a person or their family to not take extreme measures to save their life. A DNR order is most often written when a person is near death or has a terminal illness. It's used when a person would not have a high quality of life or a long time before death, even if they were resuscitated.
A DNR order says that you do not want CPR if your heart stops beating. Or you stop breathing. It can detail how much medical intervention a person wants before death (for instance, 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 needed for home. Emergency medical services (EMS) can't use an advance directive. They have to do CPR if you don't have a DNR order to show them.
Physician orders for life-sustaining treatment (POLST)
Physician orders for life-sustaining treatment (POLST) are only used in some states. Your healthcare provider can help you find out if the state you live in honors them. These are medical orders that are written by a healthcare provider. They can contain much the same information as an advance directive. They also include whether you want to get CPR in an emergency (DNR orders).
While an advance directive is a legal document, a POLST is a medical order. This means that EMS can use a POLST to know exactly what kind of care they can give.
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. It may also be done to learn more about the fatal disease, which can help design future diagnosis, treatment, and prevention strategies. Or it may be done to improve the quality of care in the hospital, advance research, or for medical teaching.
The decision to have an autopsy is a personal one. It should be made when the family is ready. Sometimes an autopsy may help the family with closure. They can rest assured that nothing more could have been done. An autopsy can also provide important information for family members. This may be the case when a loved one has a rare disease or cancer. Or when a loved one has a condition that has a genetic link. If genetic testing has not already been done, or is not available, storing DNA samples for future use (called DNA banking) may give the family a choice for genetic testing in the future.
People with cancer may be able to donate organs. But it depends on the type of cancer and other medical conditions. Many times, even if a solid organ can't be transplanted, tendons, bones, skin, and corneas can be.
Organ donation laws vary slightly from state to state. Your healthcare provider can tell you about your choices.
Palliative care and hospice care
Palliative care is care aimed at comfort rather than cure and treatment. Palliative care treats symptoms, such as pain and nausea, but not the disease causing them. It's used along with treatment. It's a normal part of good medical care.
Hospice is a type of palliative care used when disease treatment is no longer working or is stopped, and the disease will lead to the person's death. It provides services to improve the quality of life for the family and their loved one at the end of life. Hospice stresses peace, comfort, and dignity.
Your treatment team can talk with you about these choices and how they might help you and your loved ones.