End of Life Care

What is Life-Sustaining Treatment?

Advances in medical treatments and technologies sometimes create medical dilemmas. For example, certain treatments can be lifesaving and bring a person back to their previous level of function and independence.  However, treatments also can be difficult, especially for people already in poor health. Some of the more aggressive treatments used for people who are seriously ill can cause inconvenience, pain, and suffering. These treatment options can include kidney dialysis, feeding tubes, ventilators, and CPR (cardiopulmonary resuscitation). In many cases, these treatments will not cure or improve how we live with a disease. Instead, they merely prolong life.

Any person who is capable of making medical decisions for themselves may refuse life-sustaining and even life-saving treatments.  They can do this even if their life will be shortened, and even if they are not terminally ill. An informed refusal of medical treatment should always be respected. (Read more about informed consent).

In some cases, healthcare providers may refuse to provide treatment if, for example:

  • There is no medical rationale 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 the treatment is given
  • The expected survival is virtually zero

Treatments that have been started can always be stopped. Stopping or withdrawing life-sustaining treatments is appropriate if those treatments are no longer providing benefit to the patient, or are not consistent with the goals of care.

Even if life-sustaining treatments have been refused or stopped, the patient will still receive medical care to treat symptoms, such as pain or shortness of breath. 

Life-sustaining treatments and advance directives

Because many illnesses and complications cannot be anticipated, it is extremely important to have advance directives.  You can help avoid unwanted burdensome treatments at the end of life by having these documents completed and available. It is also important to discuss them with your family or friends. Rather than trying to anticipate specific scenarios, think about your goals for the time at the end of your life. For example:

  • Is your goal to prolong your life by all medically effective means?
  • Is your goal to treat medical conditions, but avoid difficult measures?
  • Is your goal to maximize your comfort?

These are highly individual decisions, but they are very important for guiding healthcare providers in providing treatments that are consistent with your goals.  They will also help guide the people you have chosen to make medical decisions on your behalf if you are not able to do so.

Advance directives are especially important for people who live in nursing homes.  (All nursing homes that receive federal funding are required to check if each resident has a set of advance directives.) A common dilemma is whether to transfer a nursing home resident to the hospital if their condition gets worse. Again, these decisions should reflect the goals of the resident and be discussed in advance to prevent unwanted and difficult care and treatment.

End of Life Symptoms

There are symptoms that are common at the end of life, and these can be distressing to family and caregivers.  These include loss of appetite, breathlessness, and/or loud respiration/breathing. There are several non-medical strategies to ease someone’s discomfort at the end of life.

  • Loss of appetite (anorexia) is an almost universal symptom in patients who are dying. Appetite stimulants and tube-feeding do not prolong survival and should not be used. Ice chips, ice pops, moist swabs, or artificial saliva can help prevent the mouth from becoming dry and cracked.
  • Breathlessness (also known as dyspnea) at the end of life is common and often distressing. Patients can feel breathless even if their breathing and oxygen levels are normal. Moving cool air across the face from a window or with a fan can be helpful. Oxygen therapy and, in some cases, medications can also help.
  • Terminal respiratory secretions (known as a“death rattle”) are a sign that death is very close. These sounds are caused by fluid that collects in the back of the throat and windpipe in patients who no longer have a swallowing or cough reflex. Repositioning the patient and elevating the head of the bed can be helpful. Gentle suctioning and medications to dry up secretions may also be used.

Care and Treatment

Palliative Care

Palliative care is specialized medical care that focuses on relieving pain and other symptoms of illness. Palliative care is appropriate for any patient with a serious illness, regardless of the stage of the disease or the prognosis. Palliative care can be provided by a primary care provider or a specialist. There are also healthcare professionals with specialized training in palliative care who can help treat more difficult symptoms.

Hospice Care

Hospice care is specialized care for people at the end of life. Unlike palliative care, hospice care is only appropriate for patients who are likely to die of their disease in the next six months. Under hospice care, patients stop active treatments that are intended to treat or cure their underlying illness. Instead, they focus on treating symptoms. Hospice care is usually provided in the patient’s home, including for those living in nursing homes. The care is provided by a team that includes a doctor and nurse, as well as other members such as an aide, social worker, psychologist, or chaplain, who can help provide social and spiritual support to patients and families.

End-of-Life Considerations

Do-Not-Resuscitate (DNR) Orders

CPR (cardiopulmonary resuscitation) may be an effective treatment for unexpected sudden death, but it is not effective or appropriate for people who are near the end of life.  A “Do-Not-Resuscitate” (or “DNR”) order can be written by your healthcare provider to help make sure you don’t receive unwanted CPR. Patients who have an implantable cardioverter defibrillator should talk with their healthcare providers about turning these devices off at the end of life to avoid painful, inappropriate shocks.

Patients who have an implantable cardioverter-defibrillator and choose a DNR order should discuss with their physicians whether the device should be inactivated.

Orders for Life-Sustaining Treatment

Most states now have initiatives to improve end-of-life care by using forms that put a person’s goals and preferences into medical orders that a healthcare provider must follow. These forms are different from advance directives and are most appropriate for individuals who are seriously ill. These forms have various 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)

Artificial Feeding and Hydration

Decreased eating and drinking is common in people who are seriously ill and near the end of life. This can be extremely distressing to families or caregivers, who may want to provide food and water artificially, such as through IV fluids or a feeding tube.  Although food and drink should always be offered by mouth to a person who is seriously ill or dying, artificial feeding and hydration may cause discomfort to someone whose body is no longer processing food and liquids normally.

Aid in Dying

A small number of states now have laws that permit physicians to prescribe medications that allow terminally ill patients to end their lives. The life-ending medications must be administered by the patient themselves, not by another person. Oregon was the first state to legalize aid-in-dying. However, data show that the option is rarely used. Even among patients who get the medications to end their lives, many ultimately do not use them.

 

Last Updated July 2017