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Advance Care Planning
Preparing for End of Life Decisions
Advance care planning is the process individuals undertake to ensure that they will receive the healthcare they want at the end of their lives. Advance care planning is important because you may become so sick that you are unable to state your own desires or participate in decision-making about your medical care. Written and verbal instructions, usually called advance directives, are intended to ensure that your wishes are known and carried out.
There are several important steps for good advance care planning. First, think about your wishes for care in a life-threatening medical situation. When would you want aggressive treatment and when would you want care focused on comfort and quality of life? Who would you want to make these decisions on your behalf if you were unable to communicate? Document your wishes and communicate them to your family and loved ones. In your advance directive, it is important to ensure that anyone you want to represent you in decision-making has been given the authority to do so. Be sure family and loved ones have copies of your advance directive documents and that the documents are available when needed. The resources listed below provide information to help you make these decisions and have conversations with those you love.
TYPES of ADVANCE DIRECTIVES in MASSACHUSETTS
A healthcare proxy is a document allowing you to designate an individual, known as a healthcare agent, to make healthcare decisions on your behalf in the event that you are unable to make or communicate your own decisions. The agent may be a trusted family member, friend, attorney, or other designated person of your choice. It is also a good idea to identify an alternate agent to serve if the original appointee is unavailable.
The role of this agent is to make decisions based on what he or she believes you would want or, if this is unknown, to decide based on your medical best interest. This agent may make healthcare decisions in any situation where you are unable to make or communicate your wishes, not just in end of life situations. You may also place specific limitations on the agent's decision-making power.
Before signing a healthcare proxy, it is important to talk to your agent to make sure he or she is willing to take on this important role. Choosing an agent is an important decision. Select someone who knows you and is comfortable honoring your specific wishes. When you choose an agent there are some exclusions you need to be aware of. The agent cannot be an “operator, administrator, or employee of a hospital, nursing home, rest home, etc. … where the principal is presently a patient." Discuss your wishes candidly and in detail so that your agent can represent you well. Having this conversation is important so that your agent will know what you would want. In Massachusetts, in order for a healthcare proxy to be legal, two witnesses must sign the proxy document.
A living will is a written statement of your wishes for medical treatment and end of life care in the event that you are unable to make healthcare decisions or communicate them directly. It may include provisions instructing physicians of the circumstances in which you wish treatment to be withheld or withdrawn, including situations in which you do not want drastic life-saving steps taken.
There is no Massachusetts law specifically governing or recognizing living wills. However, if you have appointed a healthcare proxy, living will instructions are recognized as evidence of your wishes.
Advance Directive Forms
1. Healthcare Proxy Form
There is no specific healthcare proxy form required in Massachusetts. However, easy-to-use sample forms that comply with Massachusetts law are available at the Massachusetts Medical Society website (www.mms.org), and the Honoring Choices Massachusetts website (www.honoringchoicesmass.org).
2. Other Forms
a. Five Wishes, a form developed by Aging with Dignity which combines a healthcare proxy and many parts of a typical living will, is available at www.agingwithdignity.org
b. Personal Wishes Statement, a form developed by the Central Massachusetts Partnership to Improve Care at the End of Life for documenting personal wishes, may still be found at the archived site at www.betterending.org
Note: Although it is not necessary for an attorney or a notary to be present when you execute your healthcare proxy, you may want to check with an attorney if you are not certain whether a particular form is recognized under Massachusetts law. Each state has specific laws governing advance directives. If you regularly spend time in another state, you may wish to consider completing the documents that are legally recognized in that state.
MOLST - Medical Orders for Life Sustaining Treatment
MOLST is a medical order form (similar to a prescription) that relays instructions between health professionals about a patient's care. MOLST is based on an individual's right to accept or refuse medical treatment, including treatments that might extend life. The MOLST process and form is to document, communicate and honor the life-sustaining treatment preferences of patients with advanced illness in all Massachusetts health care settings. MOLST is intended to be introduced to you by your clinician when you are seriously ill and takes effect immediately. A MOLST is completed by you (or a Health Care Agent) and your clinician.
Advance Directives in Emergency Situations: The Massachusetts Comfort Care/DNR Verification Protocol
Standard of Care:
The law requires emergency medical technicians and first responders (collectively called “ EMS personnel”) to treat and transport individuals experiencing a medical crisis; thus the standard of care for EMS personnel is to resuscitate aggressively unless a doctor at the scene directs otherwise. Living wills and durable powers of attorney are not effective to stop that response if a friend or family member calls 911 during a medical crisis outside a hospital. When 911 is called, the patient will be treated and transported to a hospital. If that is not what the family or loved one wants, 911 should not be called.
Massachusetts is one of 42 states that has (as of September 1999) adopted protocols to address the possibility of unwanted medical encounters with EMS personnel. These protocols permit the creation and recognition of do-not-resuscitate (DNR) orders that are effective in non-hospital settings and are appropriate for seriously ill people living in the community when death is expected or when medical intervention is expected to be ineffective.
Requirements of the Massachusetts Comfort Care Protocols
Effective on January 1, 2000, the Massachusetts Department of Public Health’s Office of Emergency Medical Services (OEMS) adopted Comfort Care protocols that recognize out-of-hospital DNR orders. In Massachusetts, a Comfort Care/DNR verification form or bracelet that conforms to Comfort Care requirements is the only documentation of DNR status that EMS personnel may honor during a medical crisis in an out-of-hospital setting.
Comfort Care forms and bracelets must be obtained by a physician but can be distributed by a physician to an authorized physician assistant or nurse practitioner. The forms are sequentially numbered and must be signed and dated by either the physician or the authorized physician assistant or nurse practitioner in order to be valid.
If EMS personnel arrive to find an individual in cardiac or respiratory arrest with a valid DNR but no original Comfort Care/DNR verification form (copies are not acceptable) or bracelet, they are obligated to begin CPR. Even if the duly appointed healthcare proxy states that resuscitation is not warranted, resuscitation and transport must occur unless a Comfort Care/DNR verification form or bracelet is visible.
If there is any good faith basis to doubt the continued validity of the Comfort Care/DNR order, EMS personnel are instructed to resuscitate.
Additional information about the Massachusetts Comfort Care protocols is available on the OEMS website at www.mass.gov/eohhs/gov/departments/dph/programs/hcq/oems/comfort-care/.
Children with "Do Not Resuscitate" or "Comfort Care" Orders in a School Setting
Children with terminal illnesses are attending school in increasing numbers. As the status of a child’s health declines, a family may make the difficult decision not to prolong the child's life and request a do not resuscitate order (DNR). A DNR order is executed by a physician, authorized nurse practitioner, or authorized physician assistant with the consent of the parent or legal guardian, and issued according to the current standard of care.
School districts should prepare a policy on the care of a child with a DNR order. Special consideration must be given to meeting the child's and his or her family's needs, as well as the needs of the students and staff. The child should be placed only in a school that has a full-time school nurse. The local emergency medical services should be informed (with written permission from the parent or guardian) that there is a child in the specific building with a DNR/Comfort Care order.
If a child has a DNR order, a physician can submit a Comfort Care/DNR verification form to the Office of Emergency Medical Services in the Massachusetts Department of Public Health and obtain a Comfort Care form and an identifying bracelet. As stated above, Comfort Care identification (either the bracelet or the fully executed original form) is the only authorized way for EMS personnel to recognize a patient with a current, valid DNR order. EMS personnel called to a school will honor a DNR only if the child has a Comfort Care identification. Without a Comfort Care bracelet or original form, EMS personnel who are called to a school will provide emergency treatment, including resuscitation, in accordance with standard EMS protocols, and transport to a hospital. The following website provides further information: www.mass.gov/dph/oems/comfort/ccprot2a.htm.
Respecting the family's wishes involves much pre-planning in the school setting. An individualized care plan should be developed in collaboration with the family, the child's physician, and the school physician or nurse. It should include (a) how the child will be moved to the health room or other designated area if serious distress or death should occur at another location in the school; (b) what, if any, comfort measures should be given to the child; (c) protocols for notification of the family; and, if the child has died in school; (d) who will make the pronouncement of death (physician, nurse practitioner, or physician assistant)*; and (e) how the deceased will be removed from the school. This may involve planning with the family's designated funeral home and include such factors as type of vehicle, where it will park, who will clear the corridors, and what kind of stretcher or other method of transport will be used. According to the Department of Public Health’s regulations, EMS personnel cannot transport a deceased person in an ambulance. The Office of the Chief Medical Examiner (CME) also has regulations that cover issues such as declaring the death and moving the deceased.
The plan should also address what will happen if the child is in distress but does not appear to face an imminent risk of death. The response should include immediate consultation with the parents and, consistent with the plan, contact with the local EMS provider. If EMS is called, and the child has a Comfort Care bracelet or form, EMS personnel can provide comfort care and transport to a hospital. The type of care that EMS is able to provide in this situation is spelled out in the Comfort Care Protocol, available on the above-referenced website.
When a plan is in place, the school nurse should convey the plan to the appropriate school staff and administrators, answering any questions that they may have.
Whenever a death occurs in school, a crisis team must be activated immediately to assist the family, staff, and students in coping with the loss. Special consideration must be made for any students or staff who witness the death, especially if (per DNR orders) no treatment was performed by school staff or EMS. Questions such as "What if this happens to me?" and "Will they do anything for me?" may need to be addressed.
*Nurse practitioner (NP) and physician assistant (PA) pronouncements function as "removal permits" allowing the deceased to be removed from the school grounds by a funeral director. However, the NP or PA who pronounces the death must (a) before the pronouncement try to reach the attending doctor so that the doctor can declare the death and complete the death certificate and (b) after the pronouncement, notify the attending doctor of the location to which the body has been removed so that the doctor can complete the death certificate. State law (M.G.L. Chapter 46, section 9) requires that a physician or the medical examiner complete the death certificate.
A healthcare proxy and a living will work together to form a complete set of instructions and authority for end of life care. After signing these forms, it is important to discuss these documents with and provide copies of them to your designated agent(s), family members, physician, and clergy. The law provides that a copy should be given to your primary care physician for placement in your permanent medical records. The original should be kept in a safe but easily accessible place. It is not recommended that you keep your healthcare proxy in a safety deposit box.
In addition, you should give a copy of these documents to any healthcare facility where you are admitted. Hospitals, nursing homes, and other healthcare facilities that accept Medicaid or Medicare are required to inform patients of their rights to have advance directives. They must also keep the directives in the medical record and let patients know of any policies that would keep the facility from fully complying with the directive. Be aware that if you should complete a new healthcare proxy form, the proxy signed most recently will replace any proxy that you signed earlier.
You may revoke your healthcare proxy or living will at any time while you are competent, and it will be automatically revoked if you become divorced or legally separated and your spouse was named as your agent. However, it does not have to be replaced if used or in the event that you later regain the capacity to make your own decisions.You should periodically review your healthcare proxy and living will and discuss them with your agent to make sure they still accurately reflect your wishes.
For other information and resources:
Honoring Choices Massachusetts
PO Box 444
Lincoln, MA 01773
Honoring Choices Massachusetts helps to inform and empower adults and families to make a health care plan and connect to person-centered care all through your life. We provide free downloadable health care planning information and tool kits to help you consider information to make choices for care, write down your choices in the 5 MA planning documents, and work in partnership with your care providers to receive the best possible care at every stage of health.
Consumers and care providers can download the same information, tools and discussion guides for effective and meaningful care planning discussions. Download and print the entire tool kit.
Massachusetts Medical Society
860 Winter Street
Waltham Woods Corporate Center
Waltham, MA 02451-1411
Phone: 781-893-4610 or 781-893-3800
The Massachusetts Medical Society's advance directives website provides helpful guidance on dealing with end-of-life medical care decisions. Developed by the Medical Society's Committee on Advance Care Planning, the site features:
- An overview of advance directives
- Anexplanation of the differences in various advance directives, such as health care proxies and living wills
- Healthcare proxy forms
- Links to other advance directives resources
- A description of the Medical Society's efforts around the topic of advance directives.
MOLST - Massachusetts Medical Orders for Life Sustaining Treatment
The Conversation Project
20 University Road, 7th Floor
Cambridge, MA 02138
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain. It’s time to transform our culture so we shift from not talking about dying to talking about it. It’s time to share the way we want to live at the end of our lives. And it’s time to communicate about the kind of care we want and don’t want for ourselves. Start by having conversations with your loved ones about your and their end-of-life care wishes.
The Conversation Starter Kit is a free resource to help guide you through the process.
Aging with Dignity
Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. The life and work of Mother Teresa of Calcutta served as the inspirational foundation of Aging with Dignity.
American Bar Association
Consumers Tool Kit for Health Care Advance Planning available at: www.abanet.org/aging/toolkit/home.html
Americans for Better Care of the Dying
3720 Upton Street NW
Washington, DC 20016
Americans for Better Care of the Dying is a national, nonprofit organization that focuses on improving end of life care. They offer consumer resource information on advance care planning and other aspect of end of life care and bereavement.
Coalition to Transform Advanced Care
The Coalition is dedicated to the ideal that all Americans with advanced illness, especially the sickest and most vulnerable, receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity. We will achieve this by empowering consumers, changing the health delivery system, improving public and private policies, and enhancing provider capacity.
The Eldercare Locator is a nationwide service that connects older Americans and their caregivers with trustworthy local support resources.
Growth House, Inc.
Growth House Inc., based in San Francisco, provides information and referral services for agencies working with death and dying services. Their website is a comprehensive source of Internet resources on end of life issues
Massachusetts Department of Public Health,
Office of Elder Health
Elder Health Tips - Advance Care Planning
Office of the Chief Medical Examiner (CME)
720 Albany Street
Boston, MA 02118
The Office of the Chief Medical Examiner (CME) determines the cause and manner of death in cases under its jurisdiction. The agency accomplishes this mission through case investigations and through the performance of autopsies and laboratory studies. CME is part of the Massachusetts Executive Office of Public Safety.
US Living Will Registry
The Registry electronically stores advance directives and makes them available directly to hospitals across the country through an automated system. This storage service is free and confidential.website: www.uslivingwillregistry.com