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Ethics column: advocate for advance medical directives.

April 16, 2009, will be the second annual National Healthcare Decisions Day (NHDD). Congress, as well as numerous state and local governments, formally recognized last year's event. More than 400 associations and organizations participated at the state and national level. The simple goal of this effort is to provide information and tools to assist with thoughtful reflection on healthcare choices and ideas on how to get more people to complete medical directives. Last year over 250,000 people obtained the resources to make their wishes known, but millions still need help. For more information or to sign up, visit www.nationalhealthcaredecisionsday.org.

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With this in mind, it's a good time to review what you know about medical directives, how you deal with them in practice, and what your ethical obligations are. It's important to remember that making healthcare decisions is difficult even in the best of circumstances--when a person is able, calm, fully informed and has time to consider all the options. Being sick or facing a serious surgery adds a stressful, difficult element to decision making. Often there isn't time to be thoughtful or to consider all the options. What if the patient can't participate in decision making? In a perfect world, family and close friends as well as the health care team would know the patient's wishes and make medical decisions consistent with them. Now imagine you have to make decisions for someone else, maybe your spouse, parent or other loved one. It's easy to see why families struggle with doing the right thing in such situations and know how helpful it would be to have guidance from the patient.

Knowing a patient's wishes is part of excellent nursing care, so key to that care that it is an ethical obligation. Nurses must advocate for the patient's wishes to be followed. Make it your mission to know the patient's wishes, what medical directives are, how they work, and how to help patients complete them. People often say that medical directives aren't worth the paper they are printed on. But if these documents fail it is often because we fail in our duty to advocate for them as the voice of the patient.

General Considerations

Each of us has the ability and the right to guide our health care decisions. Advance directives allow us to extend our ability into the future when we might not be able to communicate our wishes. The terms advance directives, advance medical directives, medical directives all describe documents that allow a person to make their wishes known for a time in the future when they might not be able to communicate.

All 50 states have some form of medical directive that reinforces a person's right to make medical decisions. The Patient Self Determination Act of 1990, whose requirements are bolstered by Joint Commission standards, requires all healthcare facilities that receive federal funds provide patients with information about their rights to make decisions including their right to have a medical directive. If they have one already, they are asked for a copy to be placed in their records. If they don't, they are informed they have a right to assistance to complete one. Patients don't have to have a document to have their wishes carried out. If the patient can make and communicate their decisions they must be followed. Having or not having one cannot influence their care. The Joint Commission standards also require outpatient areas such as ambulatory clinics to be prepared to assist patients with advance directives as well. Hospitals must also educate their staff, employees, and the community they serve about medical directives. Despite intensive inpatient and outpatient efforts, and the fact that directives don't require a lawyer and are free to complete, estimates are that only 25% of people at best have a medical directive.

The Tennessee Health Care Decisions Act (THCDA) was passed in July 2004 to help with health care decision-making in the event a patient becomes unable to make health care decisions for themselves. The goal of the THCDA was to provide a comprehensive law that addresses written medical directives and do not resuscitate orders, and decision making for patients that lack written directives.

Nurses should be familiar with the main types of medical directives to aid patients and their families to plan for the future. All members of the health care team must also give careful consideration to whom amongst the patient's family and close friends, might make an appropriate surrogate decision maker should the patient never complete a written directive.

Ethical Principles

Knowledge of a patient's preferences is essential for excellent nursing care, and what medical directives are all about. The ethical principle involved is respect for autonomy. This respect is an active and dynamic part of the nurse-patient relationship and takes into account the inherent human dignity of each person. Respect for human dignity is part of the foundation of nursing practice and the American Nurses Association Code of Ethics for Nurses. It is also deeply rooted in our culture. Patient preferences are best supported in a collaborative relationship where decision making is shared. Written medical directives provide an infrastructure for individuals to extend their autonomy into the future when they may not be decisional. While written directives are legal tools, they are also ethical tools that stress obligations of caregivers and families to follow the once autonomous patient's wishes.

Beneficence--to do good for the patient, and nonmalefience--to (at least) do no harm are also at work in shared decision making. Acting for the good of the patient is probably the oldest and universally acknowledged principle in health care ethics. Doing good is best expressed through clinical excellence in the nursing process along with shared decision making around the plan of care. At a minimum, decisions are made that are in the patient's best interest and minimize harm. As conditions change benefits and harms are reassessed and new treatment plans are offered, new preferences may be clarified by the patient. Non-decisional patients are seen as more vulnerable, being unable to guide their own destiny and may even be open to exploitation. Caregivers and surrogate decision makers must make decisions as the patient would have had they known the risks and benefits of treatment.

Fidelity in this context is simply seen as the promise to carry out a once decisional person's wishes. This promise flows from respect for the patient, obligations to act in good faith, and to honor the trust on which the nurse-patient relationship is founded.

Living Wills And Durable Power of Attorney for Health Care

The Living Will (LW) is the oldest and probably the most well known advance directive. LWs are about limiting treatment. They apply when a person is unable to make decisions and their physician determines that they are in a terminal or irreversible condition, or the specific condition specified in the document. This may include persistent vegetative state and irreversible coma. The physician also determines that further treatment would not offer benefit for the Living Will to apply. Patients can also leave specific instructions about whether or not they would want the administration of artificial food and fluids, pain management and other comfort measures. Patients can also decide whether to be an organ or tissue donor.

The Tennessee Advance Care Plan (ACP) contains Living Will instructions. This form is available from the Department of Health, and easily accessed on their website. The ACP is something of a hybrid document in that it also allows a person to name a health care decision maker should they become unable.

Criticism of living will type documents have grown in recent years. They can't cover all situations or the directions in them are unclear or too vague to guide treatment. Studies have also shown that most people would rather defer to others, usually their family and physician to make decisions at the time a situation occurs, rather than participate in the advance care planning process. The process requires people to confront their own mortality, a difficult thing in our culture.

Proxy directives like the Tennessee Durable Power of Attorney for Health Care (DPAHC) or Health Care Agent form may be a better document, especially for those that would rather defer decision making to another. Unlike the LW, a DPAHC applies anytime the patient can't make decisions and not just in a terminal or irreversible situation. The patient when decisional can appoint a primary and an alternate decision maker for them in the event of incompetence. This person, referred to as a Health Care Agent or Attorney-in-Fact, can make any decision the patient could have including disposition of remains after death. Such documents are superior because they give the health care team a person to talk to about what the patient would want. The agent also has the legal power to make decisions when there is family disagreement. The new form in Tennessee is called Appointment of a Health Care Agent. It is meant to function like a DPAHC.

Advance directives completed under the old law remain valid and those from other states continue to be honored. Patients can use the model forms or any form that substantially complies with state law. The THCDA provides additional emphasis on following the known wishes of a patient, oral or written, and fines are provided for failure to do so. An appointed agent can no longer override a patient's Living Will instruction and incompetent patients can no longer revoke the very document they created to aid in their future decision making. Hospitals and health care givers, who in good faith carry out a patient's directive or who refuse to do so when a request is contrary to generally accepted standards, are protected legally. Forms should be easier to complete as they can either be witnessed or notarized to be legally valid. The prohibition against health care employees being witnesses has also been removed. This recognizes that health care workers, especially nurses, are often in the best position to know if the patient is able to make decisions to complete legal documents. If necessary, one family member can be a witness if not named in the directive of the patient's will.

Do Not Resuscitate Orders

The THCDA also adds a new tool for patients, families and physicians who may choose to have a Do Not Resuscitate Order (DNR) or other treatment limits, whether in a facility or at home. The new law allows the option of a Universal DNR order by the physician. Universal means that the DNR applies between facilities. The Physician Order for Scope of Treatment or POST form is meant to be a companion to a LW or ACP to guide treatment. A copy should accompany the patient as they move through the health care system. The form itself is the physician's order and does not require additional orders. The old Emergency Medical Services-DNR order (EMS-DNR) remains valid if completed before July 2004.

Health Care Surrogate Selection

The THCDA also provides guidance for selection of a health care surrogate for patients who lack capacity but never completed written directives, or where the appointed health care agent can't be found or won't make decisions consistent with the patient's wishes, or there is no court appointed decision maker.

Specific criteria for selection help determine the surrogate who has exhibited special care and concern for the patient, is knowledgeable about their health care wishes and values, and reasonably available to help with care planning. It assumes those closest to the patient will know this including unrelated persons.

The next step is to choose from a list of possible relatives and friends based on these criteria. There is a preference list but the preference is not mandatory. The list is as follows: spouse, adult child, parent, sibling, any other adult relative, and any other adult that meets the criteria. The defining criterion is that of 'special care and concern.' For example, the daughter who is the direct caregiver for the patient is the best surrogate, versus out of town siblings who are not directly involved. The goal of this part of the THCDA is a decision maker who most likely knows the patient's current health care wishes.

For patients who lack written directives and concerned family or friends, the law allows the physician to be the surrogate. The attending physician must seek the opinion of another attending level physician not involved in the case, or seek the advice of the hospital's ethics committee or ethicist to allow them to act as surrogate decision maker. The goal is to enhance the ability of the physician to do what is in the patient's best interest when no one exists to speak for the patient.

Whether the health care surrogate is family or physician, treatment decisions must be consistent with the standards of good medical care and can include entry of the patient into a clinical trial. Decisions must also be consistent with the known wishes or values of the patient. A second opinion is also needed if a decision is made to discontinue artificial nutrition and hydration.

Conclusion

Advance directives are not perfect, especially in complex medical situations, but they do offer some help. The THCDA makes completion of directives less burdensome for patients, but these changes won't help much if we don't ask about them, and don't follow them. Make sure you ask. Work with that colleague that says it takes too much time to talk about this. Remember that knowing the patient's wishes is essential to everything we do in nursing. Just having the conversation about the patient's wishes and need to complete written directives is a place to begin understanding. Know what your policy is and get involved in making it work for patients. Give an in-service at your workplace or place of worship for National Health Care Decisions Day. At a minimum, give your family a gift and complete your medical directives.

RELATED ARTICLE: ANA Proudly Participating in National Healthcare Decisions Day

The American Nurses Assocation is proudly participating in National Healthcare Decisions Day on April 16 along with a broad array of other organizations. We hope that you will participate with us to raise awareness about these important issues across the country. If you have not already done so, please sign up your organization at: www.nationalhealthcaredecisionsday.org/maintopics/sign_up and confirm your participation.

In its first year (2008), NHDD enjoyed participation by 76 national organization and nearly 400 state and local organizations, and hundreds of thousands of people learned more about--and took action--on advance directives. Please help us ensure that ANA is well represented at the local level on April 16, 2009.

by Kate Payne, JD, RN Director of Ethics, Saint Thomas Hospital, Nashville
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Author:Payne, Kate
Publication:Tennessee Nurse
Article Type:Column
Geographic Code:1USA
Date:Mar 22, 2009
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