End of Life

Handling Health Care Issues

Health Care Issues That May Arise

If you are faced with making end-of-life choices for yourself or someone close to you, here are some common health care questions that may come up.

  • Should life support be used?
  • What if the patient’s heart stops beating?
  • What if breathing or feeding tubes are suggested?
  • Should the patient be sedated?
  • Should antibiotics be used?
  • What if the patient has a pacemaker?
  • Does the medical staff know the patient’s wishes?
  • Will refusing treatment cause the family legal trouble?
  • What if a health care provider disagrees with family members?
  • What if a health care provider is unfamiliar with the family’s views about dying?

Should Life Support Be Used?

The health care provider may ask if machines can be used to keep the patient’s vital organs working, such as a machine to help with breathing (ventilator) or to help failing kidneys remove wastes from the blood (dialysis). Such “life support” is meant to be a temporary measure that allows the body to heal itself so it can work normally again. Life support is not intended for indefinite use in someone who is dying.

The situations in which life support would or would not be used should be clearly stated in a written document, like a living will, that records a person’s end-of-life care wishes in case he or she is no longer able to speak for him or herself. Discussing your wishes about life support with a trusted family member or other person could prepare this person -- called a health care proxy -- to speak for you if necessary. You may wish to formalize this relationship with your health care proxy by using a legal document known as a health care power of attorney. This will help ensure that your wishes for life-support use at the end of life are respected. State laws indicate who can serve as a health care proxy.

What If the Patient’s Heart Stops Beating?

A stopped heart can sometimes be restarted by cardiopulmonary resuscitation (CPR) or with a machine that provides electric shocks (defibrillator). CPR is most effective on people who were generally healthy before their heart stopped.

Often, CPR does not succeed, especially in an elderly person who is already frail. The force required for CPR can cause serious new medical problems (broken ribs or collapsed lung) and result in a more traumatic death.

If the patient does not want to be resuscitated (revived), a copy of a signed Do Not Resuscitate (DNR) order containing that information needs to be provided to the health care provider overseeing care. The patient’s health care proxy should also have a copy, and family and friends should know the patient’s wishes.

DNR orders do not stop all treatment. They only mean CPR will not be used. These orders are not permanent -- they can be changed if the situation changes. DNR forms vary by state and are usually available on the Internet. Check with your state’s Department of Health for a DNR form.

What If Breathing or Feeding Tubes Are Suggested?

Sometimes a health care provider suggests technologies to assist with breathing or eating, such as a ventilator or a feeding tube.

A ventilator requires intubation, which means a tube is inserted down the throat into the windpipe (trachea). If the ventilator is required for more than a few days, the health care provider may suggest a tracheotomy instead, which means the tube is inserted directly into the trachea through a small cut the doctor makes at the throat. This bedside surgery can carry risks, including collapsed lung, bleeding, and a plugged tube.

Feeding tubes, which may be suggested when a patient cannot or will not eat, are inserted one of two ways: through the nose (a nasogastric or NG tube) or directly into the stomach through an opening in the side or abdomen (a gastric or G tube, sometimes called a PEG tube, shorthand for percutaneous endoscopic gastrostomy). Feeding tubes carry risks for infection, pneumonia, and nausea. For someone who is dying, a feeding tube may cause more discomfort than not eating.

Because feeding and breathing tubes can be quite uncomfortable, people who have them are often sedated or restrained.

Should the Patient Be Sedated?

Sometimes near the end of life, a health care provider may suggest sedation to manage symptoms that are not responding to treatment and still make the patient uncomfortable. This means using a medicine that puts the dying person in a sleep-like state. Sedation does not cause a person to die more quickly if given as prescribed, and it can be stopped at any time. Comfort care medicines for symptoms like pain may still be used while someone is sedated. A person who is sedated may still be able to hear, so talking with them may be comforting even though they do not respond.

Should Antibiotics Be Used?

Bacterial infections, such as pneumonia and urinary tract infections, are common in older people who are dying. Antibiotics fight bacterial infections. If someone is already dying, giving antibiotics probably won’t prevent death, but it may make the person feel more comfortable. Many antibiotics have side effects, so the value of trying to treat an infection in a dying person should be weighed against any unpleasant side effects.

What If the Patient Has a Pacemaker?

A pacemaker, a device implanted under the skin on the chest to keep the heartbeat regular, will not keep a dying person alive. However, an implantable cardioverter defibrillator or ICD -- a kind of pacemaker that also shocks the heart back into regular beats when needed -- should be turned off at the point when life support is no longer wanted. This can be done without surgery.

How to Turn Off an Implantable Cardioverter Defibrillator (ICD)

As the patient gets closer to death, the heart becomes weaker. The shocks provided by the ICD may no longer bring back a regular heartbeat. Depending on how the ICD is programmed, the shocks may occur more frequently. At the point when repeated shocks become uncomfortable, some patients with ICDs prefer to turn off the shocks. This can be done by a doctor or other health professional placing a special magnet on the outside of the chest to turn off the device. Some ICDs have a pacemaker. The pacemaker can be left on while the shocks are turned off.

Does the Medical Staff Know the Patient’s Wishes?

As soon as the decision is made that medical staff should not do CPR or install breathing or feeding tubes, the health care provider-in-charge should be told of this choice. The health care provider will then write this on the patient’s chart or in an electronic record using terms such as DNR (Do Not Resuscitate), DNAR (Do Not Attempt to Resuscitate), or DNI (Do Not Intubate).

If you are caring for a dying person at home, you may wish to check with your state concerning the need for a “non-hospital DNR.” In many states, emergency medical technicians (EMTs) are legally required to perform CPR and similar techniques when called to a home where someone’s heart has stopped beating. A “non-hospital DNR,” signed by the dying person’s health care provider, may be needed to allow the EMTs to not do CPR.

Hospice staff can help determine whether a medical condition is part of the normal dying process or something that needs the attention of EMTs.

DNR orders do not stop all treatment. They only mean CPR and a ventilator will not be used. These orders are not permanent -- they can be changed if the situation changes.

Will Refusing Treatment Cause the Family Legal Trouble?

Choosing to stop treatment that is not curing or controlling an illness, or deciding to not start a new treatment, is completely legal whether the choice is made by someone who is dying or by the health proxy. Some people think this is like allowing death to happen. The law does NOT consider refusing such treatment to be either suicide or euthanasia (intentionally ending someone's life to relieve pain and suffering).

What If a Health Care Provider Disagrees with Family Members?

Sometimes medical staff, the patient, and family members disagree about a medical care decision. This can especially be a problem when the dying person can’t tell health care providers what kind of end-of-life care he or she wants.

If there is an advance directive that explains the person’s preferences, those guidelines should determine care. If a health care proxy who understands the patient’s wishes has been identified, his or her decisions should be respected. If there is disagreement and no advance directive or health care proxy, it may be necessary to get a second opinion from a different health care provider or to consult the ethics committee or patient representative, also known as an ombudsman, of the hospital or facility. An arbitrator (mediator) can sometimes help people with different views reach agreement on a plan.

What If the Health Care Provider Is Unfamiliar with the Family’s Views about Dying?

America is a rich “melting pot” of different religions, races, and cultures. Traditions and beliefs about the end of life can vary widely. It is important for everyone involved in a dying person’s care to understand how family background may alter expectations, needs, and choices.

If there are religious or cultural customs surrounding death that are important to you, tell the health care team. Discussing them ahead of time may help avoid confusion and misunderstanding and could ease a dying person’s mind.

For instance, many health care providers look to a single person -- the dying person or his or her chosen representative -- for important health decisions at the end of life. But in some cultures the entire immediate family takes on that role, something American health care providers may not expect.

Don’t be reluctant to say what you want. Each person, each family, is entitled to the end-of-life care that best matches their religious, spiritual, or cultural beliefs. This can include rituals that are important to the patient and family. Make sure you understand how the available medical options presented by the health care team fit into your family’s desires for end-of-life care.