Living Will

HEALTH CARE DECLARATION

NOTICE: THIS IS AN IMPORTANT LEGAL DOCUMENT. BEFORE SIGNING THIS DOCUMENT, YOU SHOULD KNOW THE FOLLOWING IMPORTANT FACTS:

(a) This document gives your health care providers or your designated proxy the power and guidance to make health care decisions according to your wishes when you cannot do so. This document may include what kind of treatment you want or do not want and under what circumstances you want these decisions to be made. You may state where you want or do not want to receive any treatments.

(b) If you name a proxy in this document, that person has a duty to act consistently with your wishes. If the proxy does not know your wishes, the proxy has the duty to act in your best interests. If you do not name a proxy, your health care providers have a duty to act consistently with your instructions or tell you that they are unwilling to do so.

(c) This document will remain valid and in effect until and unless you amend or revoke it. Review this document periodically to make sure it continues to reflect your preferences. You may amend or revoke the declaration at any time by notifying your health care providers.

(d) Your named proxy has the same right as you have to examine your medical records and to consent to their disclosure unless you limit this right in this document.

(e) If there is anything in this document that you do not understand, you should ask for professional help to have it explained to you.

I, Margaret, born January, being an adult of sound mind, willfully and voluntarily make this statement as a directive to be followed if I am in a terminal condition and become unable to participate in decisions regarding my health care. I understand that my health care providers are legally bound to act consistently with my wishes, within the limits of reasonable medical practice and other applicable law. I also understand that I have the right to make medical and health care decisions for myself as long as I am able to do so and to revoke this declaration at any time.

Actions that should be taken if I am unable to communicate (by speech, blinking, computer or other means) or is medically diagnosed by two doctors as mentally or psychologically unfit to make my own decisions.

When seeking medical evaluations for situations requiring the examination of two or more physicians if at all possible at least one doctor should have prior experience with Margaret. Consulting Margaret’s current physicians (primary, rehab & pulmonary) is highly recommended.

1. tracheotomy: My Health Care Agent may allow a tracheotomy to be preformed if my breathing is compromised. If an Endotracheal Tube has already been placed but my respiratory status has not seen promising improvement in a period of 7 to 10 days with the endotracheal tube and my physician feels I’ll need further extended mechanical ventilation my Health Care Agent should request a tracheotomy.

If for any reason my physician feels that a tracheotomy is safer to perform immediately or would be more beneficial to my health and/or comfort than an endotracheal tube a tracheotomy may be preformed before the 7-day time period is up.

2. Experimental/unconventional treatments: My Health Care Agent may allow experimental or otherwise unconventional treatments and drugs if standard treatments have failed or are not possible to perform and my life is seriously threatened. Such treatments and my condition should be monitored by a traditional physician and supplemented as much as possible by traditional medical treatments.

3. Terminal condition AND/OR IRREVERSIBLE BRAIN DAMAGE: If my condition is terminal and I have irreversible brain damage and two doctors who have examined me agree, my Health Care Agent should request a DNR. If during this time I need a surgery or other complex medical treatments they should be denied unless performing such treatment would make my suffering less. I do not wish to be removed from mechanical ventilation or tube feedings. (Pneumonia alone is not considered Terminal. Only if severe irreversible complications come with pneumonia could it be considered as terminal.)

4. Terminal condition TWO WEEK OR MORE TO LIVE: If my condition is terminal and I’m unable to communicate my wishes and two doctors who have examined me say I have two weeks or more to live my Health Care Agent should allow treatments to keep me alive until my Health Care Agent feels that everyone who wants to visit me before my death has a chance to do so. However, if my suffering becomes too great and/or I start to require repeated traumatic emergency treatments (surgeries, CPR, defibrillation) in a short period my health care can refuse any further life sustaining measures. (Pneumonia alone is not considered Terminal. Only if severe irreversible complications come with pneumonia could it be considered as terminal)

5. HOSPITAL/NURSING HOME/REHAB CENTER: If I’m in a care facility my Health Care Agent may remove me from a care facility if they feel my care is inadequate. They may admit me to another facility or arrange for at home care. If I am receiving home care and my Health Care Agent feels my care is inadequate they may fire home care workers and/or remove me and arrange for new home care.

7. medical studies: My Health Care Agent may not sign me up to participate in medical studies unless the nature of the study directly relates to my current life threatening condition and could possibly improve my condition.

For example, my Health Care agent may not sign me up to participate in a study that compares medical tape if I’m in a coma but may sign me up to participate in a study that tests a drug on coma patients.

8. advice/second opinions: My Health Care Agent may seek advice and second opinions from other doctors regarding my current treatments on my behalf. This includes doctors outside the hospital I’m being treated at and from outside the city or state of my residence.

9. IV FLUIDS: My Health Care Agent should make sure I am receiving more than saline by IV if I am not receiving full nurtional needs by a feeding tube. Even fasting overnight can be harmful to those with SMA and can worsen my health. Doctors should give a PICC line with TPN until my nutritional intake by feeding tube fulfills at least 75% of my nutritional needs.

10. PROXY DESIGNATION: If I become unable to communicate my instructions, I designate the following person(s) to act on my behalf consistently with my instructions, if any, as stated in this document. Unless I write instructions that limit my proxy's authority, my proxy has full power and authority to make health care decisions for me. If a guardian or conservator of the person is to be appointed for me, I nominate my proxy named in this document to act as guardian or conservator of my person.

If the person I have named above refuses or is unable or unavailable to act on my behalf, or if I revoke that person's authority to act as my proxy, I authorize the following person to do so: