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Florida Department of Elder Affairs

The articles contained in this publication have been excerpted from Making Choices (2002) and the 2003-2004 Consumer Resource Guide published by the Department of Elder Affairs. For questions or to order free copies of these publications, please contact the Florida Department of Elder Affairs at 850-414-2000 or visit our web site at: www.elderaffairs.state.fl.us.

End of Life

The most important aspects of life planning and end of-life preparation should begin well before we enter the final stages of our lives. In fact, life planning should begin while we have good health and are considered to be of sound mind. Unless we carefully and deliberately plan and express our wishes in writing and in the appropriate legal format, there is no guarantee that our wishes will be correctly interpreted and honored. As we get older, there are two
important things we must do. First, give ample consideration as to the way we want our assets managed if we should become sick or incapacitated and are no longer able to manage them ourselves. Who do we know and trust who will act in our best interest? We must also consider the way we want our assests distributed upon our death. Secondly, give ample consideration to the way we want our
health managed if we are not able to manage it ourselves. What kind of medical care or services do we would we refuse? Defining our
wishes and communicating them to our family and loved ones is of vital importance when addressing end-of-life issues. Although the
decision making process may be difficult emotionally, taking thorough and thoughtful. actions now

Last will and testament

Over our lifetimes we will inevitably accumulate property and possessions. A will is a document that directs how your property will be passed on at the time of your death. It also designates a person to be responsible for assembling the property, paying debts and taxes, and distributing what is left. A person who dies without a will dies intestate. Consequently, their property passes as designated by the laws of intestacy, regardless of the wishes of the deceased. It is a good idea to make a will, even if you have very little property or possessions, to ensure that your
things are passed on according to your wishes. Examples of property include stocks, bonds, certificates of deposit and real estate. Most people wish to pass their possessions on to their children and/or family members.
Proper estate planning will enable you to reduce estate taxes and, thereby, pass on more of your estate to your loved ones. It is
important that you execute a will and specify who you want to receive what items.
Ask yourself: “How can I protect my assets, but at the same time make sure I do not violate laws or rules that may affect my receiving long-term care?”

Advance Directive A general term that refers to oral or written instructions given by a person expressing wishes about future medical care in the event they are unable to speak for themselves.
Advance directives can be changed or modified by the author. A competent adult has the right of self-determination regarding decisions concerning their health, including
the right to refuse medical treatment. Without an advance directive in place, there is no guarantee your wishes will be honored.
A person’s intent may be communicated in the following three ways:
a living will,
a health care surrogate, and/or
a durable power of attorney

A brief description of each of these directives isprovided below.

Living Will - A document that formalizes an individual’s wishes regarding the medical care that is to be used or withheld if he or she becomes incapacitated or unable to make his/her own decisions. Many living wills include “do not resuscitate orders” (DNRO) that spell out under what circumstances an individual does not want to be revived. More information about DNROs is included in this publication.

Health Care Surrogate - An individual you select to make medical decisions for you when you are no longer able to make them yourself. Your surrogate will be responsible for communicating your wishes to your doctor. In order to change or revoke the designation of a surrogate, you must provide a signed, dated Acknowledgment of your wishes.

Advance Directives Deciding to have an advance directive is only the first of several key decisions about end-of-life care. Once a person makes this decision, a number of questions arise about the best approach to take. However, the best approach may vary from one individual to another. This article identifies the benefits as well as the potential problems with various approaches. This information is intended to help you determine which avenue is best
suited to your situation.
Generally Advanced Directives Must Be:
! In writing ! Signed by the person making the will ! Compliant with state laws
! Witnessed

Durable Power of Attorney

- A document that can delegate the authority to make health, financial, and/or legal decisions on a person’s behalf. Unlike a general power of attorney, a durable power of attorney continues to be effective when a person becomes incapacitated. The durable power of attorney must be in writing and must show the person’s intent to give specifiedpower if the person is incapacitated. The durable power of attorney must specifically state that the designated person is authorized to make health care decisions. If you choose not to write an advance directive, be sure all of your
family and friends clearly understand what you wish to have done if you are incapacitated. This common understanding among family and friends will help to prevent confusion as to the interpretation of wishes.
Ask yourself: “Do I need an attorney to complete my end-of-life documents?”
Consulting with an attorney is recommended. Although an attorney is not required to fill out advance directive forms, there are specific legal requirements that vary from document to document and from state-to-state. Failure to follow these specific requirements may invalidate an entire document and could result in one’s wishes not being observed. An attorney, licensed in Florida, can ensure that your forms are in proper order. To find a licensed attorney, contact the Florida Bar Lawyer Referral Service at 1-800-342-8011 or visit www.flabar.org. If you cannot afford an attorney,
you may contact your local legal aid office.

Having only a living will

Advantage: Some people have felt that if they could be sufficiently clear about their choices of treatment limitations in a living will, they would not need a surrogate decision maker. In one case a man reported that he deliberately chose this strategy, so that his wife would not have the emotional burden of making decisions or the responsibility for carrying out his choices about limitations or refusals of treatment.
Disadvantages: Most living wills cannot adequately foresee all of the clinical circumstances that may arise; therefore, some decisions may need to be made that the patient could not have foreseen or directly addressed in prior instructions.
Therefore, what is expressed in a living will often needs to be augmented by a decision-maker chosen by the patient who will be able
to interpret what is in the living will or explain what the patient would have wanted under the circumstances.

Having only a health care surrogate decisionmaker. Advantages Some groups advise that the best way to prevent a living will from being interpreted in a way that results in an outcome contrary to your intention is to not write one at all. This strategy tries to prevent that misinterpretation by simply naming someone who knows
what you want and who will express those decisions for you, without having a document that may be ambiguous and therefore used by others to challenge what your surrogate says you would want.
Disadvantage: Although the risk of the above scenario cannot be ruled out, a written living will can also be an important source of formal support for what your surrogate says you would want when someone challenges his or her account of
what you would have chosen. If your surrogate is challenged by someone who says, “How can you demonstrate that what you have chosen is what the patient would have wanted?” Written documentation of your choices can be used to show consistency.

Having a combination of living will and
health care surrogate decision-maker

Advantages: The key to making this option work for you is to make sure your surrogate has read your living will and asked you questions to clarify
any remaining questions. If you have both a living will and a surrogate, a challenger will find that it is his word against yours and your surrogate’s, instead of his word against your surrogate’s word alone.
Disadvantage: If your surrogate hesitates to follow your choices as expressed in the living will, it makes it very difficult for the physician to withdraw
treatment that you refused in writing.

Relying on the proxy decision-maker instead
of naming a surrogate decision-maker

Advantages: If choosing one member of your family to be your surrogate will hurt the feelings of others, it may be tempting to simply avoid choosing, especially if the list of proxy decision-makers specified in statute will turn out to be the
same person you would have chosen,anyway. Health care decisions may be made for the patient — if the patient has no advance directive or designated surrogate — by any of the following individuals, in the following order of priority:
! Judicially appointed guardian ! Patient’s spouse ! Adult child of the patient
! Adult sibling of the patient ! Adult relative of the patient ! Close friend of the patient.

See section 765.401, Florida Statutes.
Disadvantages: The problem with this is that a proxy’s decision may be more easily challenged than a specified surrogate’s. By naming a surrogate, you are giving that person the legal presumption (in Florida) that his/her determination of what youwould want is correct. Challenging what your surrogate says will have the burden of showing that person is wrong. By naming a surrogate, you place your decision-maker in a much stronger position to prevail against anyone who might decide to challenge him or her. Including “choice ofsettings” language. One strategy that may help you improve the probability that you will have your choices honored is to specify in your advance directive (living will and/or surrogate) your choice of the setting in which you want to spend your last days. You may want to rank order several options to allow for trials of……. certain types of treatment that require hospitalization, but specifying
that if there is not sufficient improvement, you choose to be moved to your home, or if that is not possible, to a residential hospice or a nursing facility near your home and family or friends. You may also want to add a statement that once the conditions of your living will are met, you wish to be moved to your home or choice of facilities, even if such a move could increase the risk to your health status.
Decisions on which of these approaches to advance care planning best suits you requires careful reflection. But don’t stop with reflection. Follow up by implementing the approach you choose, and talk with your physician(s) and your loved ones about what you have chosen. This process can minimize a host of problems later.

EMS and Do Not Resuscitate

The emergency medical services (EMS) system delivers rapid out-of-hospital medical care for victims suffering from sudden illness or injury.  As early as 1990, the growing awareness over end-of-life issues and the desire to honor a patient’s wish not to be resuscitated, prompted
the Florida Department of Health, Bureau of Emergency Medical Services to examine ways to validate a document that would allow EMS providers to honor a patient’s last wishes. In 1992, the first legislation addressing pre-hospital Do Not Resuscitate Orders (DNRO) was enacted. The 2000 Do Not Resuscitate Order legislation authorized changes to the form, and also provided protection from civil liability for criminal prosecution to virtually every licensed health care facility honoring the DNRO. Since that time, the Bureau has consulted with health care providers, consumers and other state agencies.

In February 2000, a revised, yellow DNRO form was redesigned for simplicity and portability.

The Do Not Resuscitate Order

A Do Not Resuscitate Order is a specific, physician-directed document that says that the individual does not wish to be resuscitated in the event of cardiac or pulmonary arrest. It is usually written for someone who is terminally ill, suffering from an end-stage condition or in a persistent, vegetative state. According to the DNRO, Form 1896, cardiopulmonary resuscitation includes artificial ventilation, cardiac compression, endotracheal intubation and defribulation.

Note: important paragraph read below
The development of the DNRO was critical to EMT’s and paramedics. When an EMT or paramedic arrived on scene they needed to respond immediately by providing care to the patient in cardiac or respiratory arrest, unless presented with clear proof of the patient’s wish not to be resuscitated. This situation could become volatile and occasionally led to conflict when family members disagreed with the EMT’s decision to attempt resuscitation. Many health care facilities would use their own forms, and doctors would write, “Do Not Resuscitate” in a patient’s chart. However, if a patient was transferred or transported to another facility,their wishes may or may not have been honored. EMS needed a readily accessible,standardized document that would meet the needs of the patient, but that would also be recognized statewide by EMS providers as legal and binding, protecting them from potential civil and criminal liability for honoring the DNRO document.

The DNRO “Yellow Form”

The DNRO is often referred to as the “yellow form” because it must be either the original on canary-yellow paper, or a copy made onto similar colored-yellow paper. It must be signed by the individual or the individual’s health care representative and by a Florida licensed physician. According to Chapter 64E-2.031,
Florida Administrative Code, any previous version of the Department of Health Do Not Resuscitate Order will be honored, and there is no need to sign a new form. The Florida DNRO is only valid in Florida, and it can be revoked, either orally or in writing, at any time by the patient or the patient’s health care representative.

Patient Identification Device

At the bottom of the DNRO there is a patient identification device that was included and may be removed from the form by cutting on the perforated lines, completed and may be laminated. To use the Patient Identification Device, the person or the person’s health care representative and a Florida licensed physician must sign the device. If laminated, the device can be worn around the neck, on the wrist, or attached to bedding, clothing or somewhere else where it can be easily seen. The Patient Identification Device was designed for portability between settings. The device is a card, and does not have to be completed with the DNRO, Form 1896, for the form to be valid. Once completed and removed from the form, the Patient Identification Device is equally valid to the DNRO, Form 1896. The Patient Identification Device should not be carried as a wallet card. Emergency medical technicians and paramedics are unlikely to have the time before they attempt resuscitation to search a wallet of someone in cardiac or pulmonary arrest. If using the device, it is best to keep it displayed or easily accessible at all times.

Portability

The yellow DNRO form was redesigned also with portability in mind, allowing one document to walk through many different health care settings. According to Florida Statutes, the DNRO may now be honored in most health care settings.

Calling 9-1-1

When a person signs a DNRO itis a critical time in his or her life. He or she has made a personal choice, hopefully with the support of family, caregivers and health care workers, including hospice professionals and volunteers. Even if prepared, managing death is difficult and may not occur instantly. The person may experience a wide range of symptoms, including shortness of breath, pain, seizure or other problems. When this happens, those caring for the patient may be unsure of what to do, scared, or just want the support of a health care professional. This is the time at which many decide to call 9-1-1, the emergency services telephonenumber. Any family member, caregiver or health care provider can call 9-1-1 at any time to attend to the patient with a DNRO. The DNRO only means that in the event of cardiac or pulmonary arrest, EMS will not attempt resuscitation. A person will still be treated for painand provided “comfort care.” Itis clear that a DNRO does not mean “do not treat for pain,” “do not offer comfort care measures like oxygen” or if there is a reversible treat or transport to another facility.”The State of Florida is undertaking an educational effort to prepare emergency medical technicians and paramedics to better respond to calls involving a DNRO so that they are prepared to treat and comfort patients and families at the end-of-life. Emergency Medical Services personnel are there for the family and act as a resource in a difficult time, providing comfort care or transport to another facility if the need arises.
When the technician or paramedic arrives, as much information as possible should be shared with them so they will be able to provide the most effective and efficient care. It is important to have the DNRO available immediately, so that they will not delay treatment while someone searches through files or drawers for the proper documents. Make clear the wishes of the patient, specifically that they do not want to be in pain or what type of comfort or care they need or request.

Resources

When deciding to complete a Do Not Resuscitate Order, You should also inform your family members or caregivers about your wish not to be resuscitated. It is important
to reiterate that a Do Not Resuscitate Order does not mean do not treat, and the provision of comfort care measures, such as oxygen or medicines are available through emergency medical services. If you have questions about the DNRO, Form 1896, contact your local EMS provider, your physician, local attorney or senior center program. You can also call (850) 245-4440, ext. 2735.
PREPARING FOR END OF LIFE