You can have a say in the health care you receive by doing some planning and communicating now. Advance health care planning permits peace of mind for you and your family by reducing uncertainty and avoiding confusion and conflict over your care.
Some basic steps:
- Think about what's important to you and how you want to receive your health care
- Select a person to speak for you if you are unable to speak for yourself
- Talk about your health care wishes
- Put your choices in writing
Take a few minutes to complete the following thoughts - there is no right or wrong answer, just your own perspective:
- Describe in your own words what makes life meaningful and worth living to you...
- What aspects of life are most important...
- Who or what sustains you when you face serious decisions or challenges in your life...
- How do you want to live your life...
Your answers and ideas may change as time or circumstances vary, but discuss these ideas with someone else - do they understand what is important to you?
If you become unable to speak for yourself or to make health care decisions, New York State law allows you to pick someone to speak for you and make decisions on your behalf. They must be a competent adult at least 18 years old, and should be someone you are comfortable having represent your wishes. Make sure that they are willing to act for you.
Have frequent discussions about your wishes with those who might be involved in future health care decision-making. Review any written documentation regularly, especially if there is a change in your health status. It's very important to discuss your wishes about artificial nutrition and hydration with your spokesperson. Share your thoughts, concerns and opinions.
Put your choices in writing. If you have a chronic health condition, discuss with your doctor possible scenarios and the benefits and burdens of various treatment options so you can consider care you might want. A Health Care Proxy form names a person who will serve as your health care agent, making decision only if doctors decide you are not able to. Carefully read the guidelines for completing the form so it meets legal requirements. Document on your Health Proxy form that your spokesperson and alternate know your wishes regarding artificial nutrition and hydration. The Health Proxy form does not need a lawyer or notarized signature, although it does require witnesses who are not your agent or alternates.
Have these conversations now, before you experience a health crisis, while you are able to share what is important to you. Whether you're 18 or 80, documenting your wishes today means your family won't have to make heart-wrenching decisions later.
Many resources are available to help you with the entire process - we strongly encourage you to visit these sites for thought provoking exploration. The sources below include information on documenting your wishes, or thinking about various topics, and forms you can use. The Department can also send someone to further educate your group - just call 858-8081. Web links frequently change; try using a search engine to search for an item if a link is broken.
New York State Department of Health
- Information for consumers and links to information about the Health Care Proxy form and the Form in various languages:
- Information for professionals:
"Advance Care Planning, Compassion and Support at the End of Life, How to maintain control, achieve peace of mind, and assure your wishes are honored" for NYS residents
www.compassionandsupport.org - Compassion and Support is an End-of-Life and Palliative Care Initiative in New York State. Topics covered include Medical Orders for Life Sustaining Treatment (M.O.L.S.T.), provider and community education materials, videos, downloadable MOLST and Advance Care Planning booklets. M.O.L.S.T. became part of NYS public health law in 2009.
"Sharing Your Wishes" A Planning Guide - a booklet available through the Community Health Foundation. In Erie County, contact the Coalition for Health Care Decision-Making 686-8070; or in Niagara County, the Niagara Caregivers Network (716) 285-8224
Go Wish game from Coda Alliance gives you an easy, entertaining way to think and talk about what's important to you if you become seriously ill. Play the Go Wish game alone, in pairs, or in groups. Ordering information is available at their website, http://www.codaalliance.org/.
American Bar Association Consumer's Toolkit for Health Care Advance Planning
Aging with Dignity, 1 (888) 5-WISHES, 1 (888) 594-7437, Five Wishes Document
The Center for Hospice & Palliative Care, (716) 686-1900
Upstate New York Transplant Services, (800) 227-4771
"On Our Own Terms" with Bill Moyers
Family Decisions Coalition
Americans for Better Care of the Dying
Center for Healthcare Decisions
Medical Orders for Life-Sustaining Treatment, MOLST, in New York State
Supported by the National Institute on Aging, this research base is augmented with suggestions from practitioners with expertise in helping individuals and families through this difficult time. Terms comfort care, supportive care, and palliative care are used to describe individualized care that can provide a dying person the best quality of life until the end. Stories depict situations that reflect common experiences at the end of life, and many helpful links to national organizations. http://www.nia.nih.gov/health/publication/advance-care-planning