Background Information to Aid in
Understanding the Study of Care
at the Last Place of Care

Q & A FOR CONSUMERS

1. What are the implications of these findings?
   
   Too many Americans dying in institutions continue to receive inadequate pain medication and are not treated with respect, and their family members are not provided with adequate emotional support or information from physicians. We should keep these findings in perspective. The majority of bereaved family members reported no concerns. Many nursing homes and hospitals are providing high quality end-of-life care. However, we believe there are important opportunities to improve and enhance the quality of care. Health care institutions must accept the challenge of continually striving to improve the quality of care they provide.
   
   
   
2. What can I do?
   
   Talk about your concerns with your physician or other health care provider. Be an informed consumer - ask questions and insist on answers.
   
   If you are seriously ill, bring an advocate to your physician's office, the ER, or the hospital. The person who acts as your advocate should not be afraid to question health care providers and should insist on receiving an adequate explanation of your medical treatment.
   
   Plan ahead by completing a written advance directive, such as a Durable Power of Attorney for Health Care. Discuss your wishes for medical care with the person that you name as your DPOA and with your family.
   
   Your local hospice is a wonderful resource to answer your questions and concerns.
   
   
   
3. Where can I get further information?
   
   Choices and Conversations provides a guide to end-of-life care via the internet at
   http://www.chcr.brown.edu/commstate/A2ENDOFLIFE2.PDF.
   
   Partnership for Caring provides information about quality end-of-life care and the use of advance directives, online at http://www.partnershipforcaring.org/HomePage.
   
   Growth House has by far the largest collection of information about end-of-life care for both consumers and professionals, online at http://www.growthhouse.org.
   
   
   
4. How do I find a hospice program?
   
   The National Hospice and Palliative Care Organization maintains a directory of hospices. The hospice directory is online at http://www.nhpco.org/custom/directory, or you can call NHPCO at 800-658-8898. NHPCO also offers a wealth of information about hospice and palliative care at /http://www.nhpco.org.
   
   
   
5. How do I find a physician who specializes in palliative medicine?
   
   As defined by the American Board of Hospice and Palliative Medicine, a physician who specializes in palliative medicine provides "care of patients with active, progressive, far advanced disease for whom the prognosis is limited and the focus of care is quality of life. This discipline recognizes the multidimensional nature of suffering, responds with care that addresses all of these dimensions, and communicates in a language that conveys mutuality, respect, and interdependence."
   
   To locate a physician with certification in palliative medicine, see the American Board of Hospice and Palliative Medicine web site at http://www.abhpm.org/?ref=patients.