Be present. Ask questions. Speak up.
Keep good records.
Refuse to be intimidated.
Most importantly, don’t give up.
Survival involves taking control of your life and being proactive with the decisions you make. Surviving a journey through the U.S. health care system involves more than getting out alive. Sometimes survival means holding on to your own dignity and dying on your own terms.
Whether you are a caregiver, patient, health care professional or patient advocate, there are resources available to help you. The more you know, the better you’ll be able to achieve the outcome that’s important to you.
Here are links to resources that may be of help at different stages of your process:
- Administration on Aging, U.S. Department of Health and Human Services. (2013). Long-term care ombudsman program.
- Administration on Aging, U.S. Department of Health and Human Services. (2014). Who needs care?
- Agency for Healthcare Research and Quality, U.S. Department of Health & Human Services. (2012). Never events.
- Agency for Healthcare Research and Quality, U.S. Department of Health & Human Services. (2014). Making sure your surgery is safe.
- Aging with Dignity. (2013). Five wishes.
- American Cancer Society. (2013). Patient’s Bill of Rights.
- American Hospital Association. (2013). The patient care partnership.
- Center to Advance Palliative Care, National Palliative Care Research Center. (2011). America’s care of serious illness: A state-by-state report card on access to palliative care in our nation’s hospitals.
- Centers for Medicare & Medicaid Services. (2013c). Medicaid.
- Centers for Medicare & Medicaid Services. (2013e). Nursing facilities.
- Clancy, C.M. (2008, March-April). How patient-centered healthcare can improve quality. Patient Safety & Quality Healthcare.
- Committee on Quality of Health Care in America, Institute of Medicine. (1999). To err is human: Building a safer health system . Washington, DC: The National Academies Press.
- Committee on Quality of Health Care in America, Institute of Medicine. (2001). Crossing the quality chasm: A new healthcare system for the 21st century. Washington, DC: The National Academies Press.
- Conway, J., Federico, F., Stewart, K., & Campbell, M.J.(2010). Respectful management of serious clinical adverse events (2nd edition). [IHI Innovation Serieswhite paper. ] Cambridge, MA: Institute for Healthcare Improvement.
- Davis, K., Schoen, C., & Stremikis, K. (2010, June). Mirror, mirror on the wall: How the performance of the U.S. health care system compares internationally, 2010 update. [Published by The Commonwealth Fund.]
- Eldercare Navigators, LLC offers individual customized health and legal navigation services, and works with employers to provide elder care benefits to their employees who may be caring for aging parents.
- Frydman, G. (2013). Patient-driven: The growing impact of networked patients.
- Joint Commission. (2008). Sentinel event alert, issue 40: Behaviors that undermine a culture of safety.
- Joint Commission. (2013b). National patient safety goals.
- MetLife Mature Market Institute. (2010). The MetLife study of working caregivers and employer health care costs: New insights and innovations for reducing health care costs for employers.
- National Alliance for Caregiving in collaboration with AARP. (2009). Caregiving in the U.S.: Executive summary. [Funded by MetLife Foundation.]
- National Hospice and Palliative Care Organization. (2012). NHPCO facts and figures: Hospice care in America.
- Torrey, T. (2013, February 10). Proactive survivorship—The sixth stage of grief, a catharsis for anger.
- Unresolved disrespectful behavior in healthcare: Practitioners speak up (again)—Part I. (2013, June 27). ISMP medication safety alert! [acute care edition, Institute for Safe Medication Practices].
- World Health Organization. (2013). World health report 2013: Research for universal health coverage.