EO - Committee on Approaching Death Public Comment

Committee on Approaching Death:
Addressing Key End of Life Issues

Public Comment

To help the committee with its work, individuals and organizations are invited to share their thoughts about care for people who are likely approaching death. This includes people who have a serious and progressive illness or condition (disease that is growing or spreading or physical condition that is worsening).

The committee invites individuals who are likely approaching death, families, caregivers, health care professionals, and others interested in these issues to share their comments. The committee is especially interested in hearing about the following topics:

Barriers to and opportunities for improving care for individuals and their families,
Patient and family experiences with care, and
Health care provider experiences. The committee is especially interested in the perspectives of:

critical care/surgery/emergency medicine providers
primary care providers
chronic disease specialists
hospice and palliative medicine providers (including volunteers)
chaplains and other religious or spiritual advisors
community-based or home health aides
health care administrators

Public Access File: We hope that you will take a few minutes to answer these questions. Your participation is voluntary and you may choose not to participate at any time without any penalty. If you decide to participate in responding to this request for information, you may withdraw at any time. Individuals under the age of 18 should not submit comments.

IOM will not record identifying information such as your name, email address or IP address. Only aggregated responses without personally identifying information will be presented to the committee and placed in the Public Access File (PAF) for this project. Your response may also be referenced or quoted in the report for this project. Please do not include any information in your response that you do not wish to be made available to the public or included in the report.

You may submit comments in any or all of the following areas. To share your thoughts, please complete the following electronic form.
All comments must be received by November 1, 2013.

Experiences Receiving Care

Question 1: If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. Your stories may include how you have talked with health care providers, your family, and friends; how you have discussed and reviewed your spiritual or religious needs, your finances, or any other issues. Your stories may also include what you liked and did not like about communication with your providers and others who gave you support, treatment approaches, or any other aspects of care.

Question 2: If you are a family member or friend of an individual who passed away, what care or supports did you need and/or receive while your family member or friend was in the advanced stages of their condition. What care or supports did you need and/or receive after they passed? What care or support did you NOT receive and wish you had received during the illness, at the time of death, or afterwards?

Experiences Providing Care

Question 3: If you are a health care professional, please tell us about your experiences in providing care to individuals with serious progressive illness or condition and their families. What are the problems, opportunities, challenges, and successes you encounter? Does the term “end of life” impact the willingness of the individuals you work with to engage in the provision of care or the willingness to receive it? Please indicate what type of professional you are (discipline/specialty).

Barriers to Care

Question 4: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?

Improving Care

Question 5: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?

Additional Comments

Question 6: If you have additional thoughts about improving research, care, and education for or about individuals with a serious illness or medical condition who are likely approaching death, or if you would like to share information related to the committee’s work, please use the space provided below to do so. You may also email documents or articles to support your testimony to eol@nas.edu.

Activity Contact Information

For More Information Contact

Thelma Cox

Phone:: 202-334-1755
E-mail:: tcox@nas.edu

Mailing Address

Institute of Medicine

500 5th Street, N.W.
Washington, DC 20001

Committee on Approaching Death: Addressing Key End of Life Issues Public Comment

Activity Contact Information

For More Information Contact

Mailing Address

Committee on Approaching Death:
Addressing Key End of Life Issues

Public Comment