End of Life Care

What is Life-Sustaining Treatment?

Medical care can save lives. Many times, people who have been very sick get better, go back to their everyday lives, and become independent again. But sometimes, people who are very sick and not in good health can't get better. Some treatments they get can cause more pain and problems.

For example, people with dementia often can't eat or swallow when they are close to dying. So, some doctors use feeding tubes, which can be uncomfortable and get infected. Feeding tubes don't make the person live longer. Another example is CPR (which helps when the heart stops) after a heart attack. CPR can break the ribs of a weak, older person, and it often doesn't save their life.

People who are very sick or not in good health might decide they don't want these kinds of treatments.

Any person who can make medical decisions has the right to refuse treatment. People can refuse treatments, even those that might save their lives or help them live longer. A person can refuse treatments even if they don’t have a fatal disease. Healthcare providers need to respect a person’s informed refusal of medical treatment. (Read more about informed consent).

In some cases, healthcare professionals may refuse to provide treatment to a person when, for example:

There is no medical reason for the treatment
The treatment has proved ineffective for the person
The person is unconscious and will likely die in a matter of hours or days even if they get the treatment
The chance of living after treatment is very low

Treatments can always be stopped. This is more likely to happen if treatments aren’t helping the person or go against the persons choices for medical care.

If a person has refused or stopped life-sustaining treatments, they still can get medical care for problems, such as pain or shortness of breath.

Life-sustaining treatments and advance directives

People need to have advance directives. These written documents make known the person’s choices about medical care when they can’t do this themselves. People need to discuss their choices and these documents with family and friends so loved ones know.

When writing advance directives, a person needs to think about their goals at the end of their lives. For example:

Is the goal to live as long as possible?
Is the goal to treat medical problems, but avoid treatments that are painful or not worth doing?
Is the goal to be as comfortable as possible ?
Is the goal to have a good quality of life, including the ability to do things the person enjoys?

Having advance directives can help a person avoid unwanted treatments at the end of life. These documents can also help people get the treatment they want.

Advance directives are very important for people who live in nursing homes. These people are usually sick or weak. (All nursing homes that get money from the government must see if each person living there has advance directives.

Medical choices should match the goals of the nursing home residents and stop treatments they don't want. For example, a big question is whether to move a nursing home resident to the hospital if they get sicker. Residents might not want to be moved so they can pass away peacefully in their home without the stress of going to a hospital.

End of Life Symptoms

There are symptoms that are common at the end of life. They can trouble the family, caregivers, and person who is dying.

Loss of appetite

Almost every person who is dying has this symptom. Appetite stimulants and tube-feeding do not prolong survival and need to be avoided. Ice chips, ice pops, moist swabs, or artificial saliva can help prevent a person’s mouth from becoming dry and cracked.

Breathlessness (also known as dyspnea)

This condition at the end of life is common and often hard. A person can feel breathless even if their breathing and oxygen levels are normal. Moving cool air across a person’s face from a window or with a fan can help. Oxygen therapy and, in some cases, medications can help.

Terminal respiratory secretions

Also known as a “death rattle,” terminal respiratory secretion are a sign that death is close. These sounds are caused by fluid that collects in the back of a person’s throat and windpipe. This happens when the person can’t swallow or cough. Moving a person in bed and raising the head of the bed can help. Gentle removal of the fluid and medications to dry up secretions may also be helpful.

Care and Treatment

Palliative Care

Palliative care is medical care that focuses on relieving a person’s pain and other symptoms of illness. This type of care is for any person with a serious illness, regardless of how long they may live. Primary care professionals or specialists can provide palliative care.

Hospice Care

Hospice care is specialized care for people who are likely to live 6 months or less. Being in hospice means shifting from trying to extend life to treating symptoms and improving the person’s quality of life.

People can receive hospice care in their homes, in a nursing home, or in an inpatient hospice facility. The team providing care includes a doctor or nurse practitioner, nurse, home health aide, social worker, chaplain, and volunteer.

These team members visit dying people regularly and are available by phone all day, every day. However, family, friends, or care teams at a facility provide most care for people receiving hospice care.

End-of-Life Considerations

Several medical orders need attention when a person is at the end of their life.

Do-Not-Resuscitate (DNR) Orders

CPR (cardiopulmonary resuscitation) can be effective for sudden and unexpected death. However, it is painful and often not effective for people at the end of their lives.

A healthcare professional can write a “Do-Not-Resuscitate” (or “DNR”) order. This order can prevent CPR when a person’s heart has stopped. People who have an implantable cardioverter defibrillator (ICD) need to talk with their providers about turning these devices off at the end of life. This can help them avoid painful shocks to their hearts. These shocks are meant to restart a person’s heart.

Orders for Life-Sustaining Treatment

Most states allow forms that put a person’s choices about their care into medical orders that healthcare professionals must follow. Generally, a person’s physician writes these orders, which prevent healthcare professionals from doing life sustaining treatments like CPR.

These forms differ from advance directives about end-of-life care. The forms are for people who are seriously ill, but not necessarily dying. These forms have different names including:

Physician Orders for Life-Sustaining Treatment (POLST)
Medical Orders for Life-Sustaining Treatment (MOLST)
Physician Orders for Scope of Treatment (POST)
Medical Orders for Scope of Treatment (MOST)
Most states’ POLST form are available at the National POLST website.

Artificial Feeding and Hydration

People who are seriously ill or dying often eat and drink less. This can be very hard on families or caregivers, who may want to provide food and water artificially. This happens with intravenous lines or a feeding tube. This type of care can be painful and confusing for the person who is dying and it can cause infections.

Healthcare staff need to offer food and drink by mouth to a person who is seriously ill or dying. However, if the person refuses it, the staff need to honor this choice.

Medical Aid in Dying

A few states have laws that allow physicians to prescribe medications that help people, who have an illness that will cause death, to end their lives. The person needs to take the life-ending medications themselves. Oregon was the first state to legalize aid-in-dying.

Many of the people who get the medications to end their lives don’t use them.

Last Updated May 2023