Jun 15, 2009 Table of Contents

Please note: This information was current at the time of publication. But medical information is always changing, and some information given here may be out of date. For regularly updated information on a variety of health topics, please visit familydoctor.org, the AAFP patient education Web site.

Information from Your Family Doctor

Care for People with a Severe or Complicated Illness

Am Fam Physician. 2009 Jun 15;79(12):online.

See related article on end-of-life care.

What is palliative care?

Palliative (PAL-ee-uh-tiv) care is a special type of medical care for people with a severe or complicated illness. It focuses on treating the body, mind, and spirit, and helps to support a patient and family's comfort and dignity. It also helps patients and their loved ones choose treatments that will best meet their goals for improving quality of life. For example, a patient with a painful and terminal illness may ask for palliative care to control symptoms and help to understand treatment options. For some patients, the treatment for an illness can seem worse than the illness itself. These patients can talk to a palliative care specialist about planning care that causes less pain. Palliative care should be offered when a patient finds out about a serious or complicated illness. It can be provided along with the treatments that try to cure or stop the illness.

How do I know what treatments I should try?

The best way to choose the right treatment is to set goals. You should think about these goals in the context of your life. What is most important to you and your loved ones? What do you want to do before you die? Talk to your doctor about your goals and about the areas in your life in which you need support.

You should write an advance directive. This tells your doctor what kind of care you want if you become unable to make medical decisions. You should also choose a surrogate decision maker, which is a person who can make decisions for you if you can't. This can help you think and talk about your goals with your loved ones.

How do I know how long I will live?

It is hard to guess when people will die. A few symptoms that can help in figuring out how long someone may have to live include:

  • Minutes to hours: prolonged periods of not breathing for more than 30 seconds at a time

  • Hours to days: uneven breathing; different colored spots on the skin; very low blood pressure or oxygen levels; arms and legs that turn blue

  • Days to weeks: no fluid intake or no urination

  • Weeks to months: stopping treatment for a progressive illness, which is an illness that gradually gets worse (for example, cancer), in people who can't get out of bed.

  • Months to a few years: spending more and more time in bed because of exhaustion and symptoms of the illness

As your quality of life gets worse, it is important to set new goals. This is especially important if medical treatments are not working or are causing side effects. Make sure that medical treatments are helping you or your loved ones achieve your goals.

What symptoms are common at the end of life?

Pain, shortness of breath, nausea, vomiting, and mental status changes (for example, increased confusion or disorientation) are common. These symptoms can be treated without shortening your life. Talk to your doctor about which treatments are best for you.

What can be done to comfort someone who is dying?

Something can always be done to comfort someone who is dying. Examples include: medical treatments for physical symptoms; support in listening or reviewing life events and relationships; and help with concerns (for example, worries about the care of loved ones, settling strained relationships, dealing with financial stress, or completing a task). Spiritual support or work (for example, expressing or receiving love; asking for or giving forgiveness; giving thanks; saying goodbye) can help with healing.

Where can I get more information?

Your doctor, palliative care specialist, or local hospice provider

Family Caregiver Alliance

Web site: http://www.caregiver.org/caregiver/jsp/home.jsp

Hospice

Web site: http://www.hospicenet.org/html/patients.html

Guide to the Great Beyond by Jane E. Brody

The Four Things That Matter Most: A Book About Living by Ira Byock

A Healing Touch by Richard Russo


This handout is provided to you by your family doctor and the American Academy of Family Physicians. Other health-related information is available from the AAFP online at http://familydoctor.org.

This information provides a general overview and may not apply to everyone. Talk to your family doctor to find out if this information applies to you and to get more information on this subject.

Copyright © 2009 by the American Academy of Family Physicians.
This content is owned by the AAFP. A person viewing it online may make one printout of the material and may use that printout only for his or her personal, non-commercial reference. This material may not otherwise be downloaded, copied, printed, stored, transmitted or reproduced in any medium, whether now known or later invented, except as authorized in writing by the AAFP. Contact afpserv@aafp.org for copyright questions and/or permission requests.

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