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End of life decisions

Few of us are comfortable talking about death, whether our own or a loved one’s. It is a scary, even taboo, subject for many. The end of a life, no matter how long and well lived, can bring with it a sense of loss and sadness. It can also be a reminder of our own mortality, so we might avoid even thinking about it.

This is normal — but death is normal, too. All of us will face it at some point.

Defining the end of life

The end of life and how people die has changed a great deal in the past century. Thanks in large part to advances in public health, medicine, and health care, most Americans no longer die suddenly from injury or infection. Instead, we live longer and, more often than not, die after a period of chronic illness.

As a result, it is hard to know when the dying process begins. Some people pass quickly, while others recover from severe illness several times before death. Even people who are the same age and sex, with the same disease and state of health, are unlikely to reach the end of life at the same time.

We often rely on health care providers to tell us when the end of life is near. But even the most experienced health care provider may find it hard to predict when someone will die. An expert might say the end is within weeks or months, but the dying person slips away much sooner or survives for much longer than predicted.

Preferences for the end of life

Because the end of life is hard to predict, it is best to plan ahead. You might want to start by asking yourself or a loved one, “What is the best way to plan for the end of life?”

The answer will differ from person to person. Some people want to spend their final days at home, surrounded by family and friends. Others may prefer to be alone, or to be in a hospital receiving treatments for an illness until the very end.

The answer may also change over time — the person who wanted everything possible done to prolong life may decide to change focus to comfort. Someone else who originally declined treatment may agree to an experimental therapy that could benefit future patients with the same condition.

No matter how a person chooses to approach the end of their life, there are some common hopes: Nearly everyone says they do not want to die in pain or to lose their dignity. Planning for end-of-life care, also known as advance care planning, can help ensure that such hopes are fulfilled.

What is end-of-life care?

End-of-life care is the broad term used to describe the special support and attention given during the period leading up to death, when the goals of care focus on comfort and quality of life.

Hospice care

One of the ways end-of-life care is provided is through hospice. Hospice, as defined by the Center for Medicare and Medicaid Services, is a program of care and support for a dying person whose doctor and a hospice medical director certify has less than six months to live.

The focus of hospice is on comfort, not cure. Currently, patients must be willing to give up curative treatments to receive Medicare coverage for hospice care. (Medicare continues to pay for any covered health problems that are unrelated to the dying person’s terminal illness.)

Palliative care

Unlike hospice care, you do not have to be dying or give up curative treatments to receive palliative care. The term “palliative care” is sometimes mistakenly used to mean end-of-life care, but palliative care is a treatment available to anyone of any age who is suffering from the discomforts, symptoms, and stress of a serious illness.

Palliative care is used effectively to provide relief from many chronic conditions and their treatments, too. Older persons who are living with one or more chronic illnesses may benefit from palliative care long before they need end-of-life or hospice care. Unlike hospice care, palliative care may be used for as long as necessary.

Questions to ask as the end of life approaches

Regardless of a person’s choices for treatment and care at the end of life, it is important to maintain the quality of a dying person’s life. To better understand the care options available for someone who is approaching death, you may wish to ask the dying person’s health care provider the following questions.

  1. Since the illness is worsening, what will happen next?
  2. Why are you suggesting this test or treatment?
  3. Will the treatment bring physical comfort?
  4. Will the treatment speed up or slow down the dying process?
  5. What can we expect to happen in the coming days or weeks?
  6. If I or my loved one take this treatment or participate in this clinical trial, will it benefit others in the future?

Additional care needs

People at the end of life usually need additional care in several areas, including for physical symptoms, emotional and spiritual issues, and practical concerns. Other sections of this health care topic address how to help make sure these needs are met.

Information courtesy of the NIH and the National Library of Medicine

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