MODULE 15.

ETHICAL ISSUES OF ELDER CARE

Module 15. Ethical Issues of Elder Care

Gloria Ramsey, RN, BSN, JD Mathy Mezey, RN, EdD, FAAN Editor: Conchita Rader, MA, RN

Staff Development Partners Edition Instructor Guide

THIS MODULE INCLUDES: 1. Expected Staff Cognitive Competencies 2. Expected Staff Clinical Competencies 3. Content Outline including Learning Activities a. REMINDER TO INSTRUCTOR: Read activities in Instructor Guide and prepare materials for activities in advance 4. Scripted PowerPoint Presentation 5. 10-item Post Test 6. Resources

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MODULE 15. ETHICAL ISSUES OF ELDER CARE EXPECTED STAFF (Cognitive) COMPETENCIES 1. Apply the concept of decision-specific capacity to older adults. 2. Apply legal and ethical principles in the analysis of complex issues related to care of older adults: informed consent, refusal of treatment, and advance directives. 3. Define ethics, bioethics, ethical dilemma, and nursing ethics. 4. Describe the major ethical principles that have an impact on older adults health care. 5. Discuss the difference between personal values and professional codes of ethics. 6. Apply a decision-making model to an ethical dilemma in nursing practice.

EXPECTED STAFF (Clinical) COMPETENCIES

Behaviors 1. Ask patient whether they have an advance directive and record this information in the medical record according to law and institutional policies 2. Obtain and document the intent of an advance directive if none is obtained on admission 3. Educate and assist a patient complete an Advance Directive 4. Participate in a Bioethics Committee discussion of an ethical dilemma How validated Direct observation and evaluation of documentation
Novice Advanced Beginner Competent Proficient Expert

Direct observation and review of documentation

Direct observation of communication skills and review of documentation Direct observation; and notations regarding how the process of ethical decisionmaking was adhered to.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE Competency 1. Apply the concept of decision-specific capacity to older adults.
A.

Decision-making capacity implies the ability to understand the nature and consequences of different options, to make a choice among those options, and to communicate that choice. Clinicians assess decision-making capacity, and ascertain whether a person possesses a set of values and goals, the ability to communicate and understand information, and the ability to reason and deliberate about choices. Decision-making capacity is required in order to give informed consent. Decision-making capacity may fluctuate over time, as a result of transient changes in a persons ability to comprehend and communicate. Competency is a legal determination by a judge as to mental disability or incapacity; whether a person is legally fit and qualified to give testimony or execute legal documents. The law presumes that all adults are competent and have the decision-making capacity to make health decisions. To be considered competent, an individual must be able to comprehend the nature of the particular action in question and be able to understand its significance.

B.

C. Because a substantial number of older adults have altered decision-making capacity, the following should be kept in mind: C.1. Decisional capacity is an issue every time an older adult is asked to consent to treatment, to participate in a research study, or to execute a Living Will, or a Durable Power of Attorney for Health Care (DPOAHC), also known as a Health Care Proxy (HCP). As long as a person retains decision-making capacity, his or her wishes and decisions shall govern health care. A persons capacity to make health-care decisions is usually self-evident. On the other hand, in advanced old age, and in the face of dementia, it is often unclear as to whether a person is capable of making specific health-care decisions for him- or herself. Rather than construing capacity as being either totally present or absent, the literature endorses the concept of decision-specific capacity. Decision-specific capacity depends on a persons ability to make a specific decision in question. In the old construct of global decisional capacity, capacity was either present or absent; an on/off switch. In this newer construct of decision-specific capacity, capacity is not an absolute; it is a dimmer switch. Cognitive impairment does not automatically constitute incapacity. A person unable to make and communicate medical decisions is deemed incapacitated. Incompetence does not necessarily mean that the individual lacks the capacity to make decisions. For example an older adult may be declared incompetent in one domain such as in handling financial matters, but may retain the ability to make medical decisions. Most older adults with impaired, fluctuating, or questionable cognitive status, including those with mild and moderate dementia, retain sufficient cognitive capability to make some, but not necessarily all, health-care decisions. For example, an older person may lack the decision-making capacity to consent to a feeding tube

C.2. C.3.

C.4.

C.5.

C.6.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE while retaining the capacity to appoint a child to make decisions for them. C.7. C.8. There is no gold standard for capacity determination. Widely used tests of mental status assessment (e.g. Mini-Mental Status Assessment or MMSE) are not definitive measures of an individuals ability to make specific healthcare decisions.

D.

Verification of decision-making capacity is required when a person is refusing or giving consent for treatment and / or executing an advance directive. Verification follows an informed consent model and typically includes the following steps:
D.1.

Ability to voice a choice or preference: This is a prerequisite to making health-care decisions because health-care decisions require that a person choose among different options. When a persons ability to choose is in doubt, as may be the case with older adults with dementia, it can be verified by asking simple questions, such as: Which do your prefer, blue, or red?; Which do you prefer, television or radio?; Which is your favorite season, summer or winter?; Which meal do you like best, breakfast or lunch? (Note: The ability to choose is a decision-specific capacity, rather than a measure of global capacity) Adequate disclosure: Information about the diagnosis, nature, and purpose of the proposed treatment, risks, and consequences, probability of a successful outcome, benefits, and risks, and prognosis if treatment is not instituted must be provided in such a way that a person can fully appreciate the information. For an older adult, adequate disclosure is dependent on attention to appropriate use of eye glasses, hearing aids, and written materials, consideration of time of day and complexity of rapidity with which information is given. Comprehension (understanding) of information: Decision making is predicated on understanding or grasping specific information. Understanding can be verified by:
D.3.1.

D.2.

D.3.

Recall of information. Asking a person to tell you in his or her own words the specific information he or she has been given about a treatment or advance directive, or asking a person to differentiate a correct statement from an incorrect statement in relation to the information that was presented, similar to a true/false question. Manipulating information: Asking a person to manipulate the information he or she has been given. For example, a person signing for an amputation should be able to state the functional impairments he or she will have as a consequence of the loss of a limb. Older people may need more time to demonstrate they can adequately manipulate information. Appreciation of the situation: Asking people to contemplate the consequences of what will happen should they choose not to agree/ or to agree to the treatment. For example, a person who chooses not to execute a healthcare proxy should be able to say that he or she knows this will limit family members ability to act on their behalf should they lose decision-making capacity.

D.3.2.

D.3.3.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE Voluntary consent. A person must not be persuaded or coerced in any way to accept a treatment or undergo a procedure. The voluntary nature of consent is jeopardized if an older adult feels compelled to comply with physician or family expectations, or fails to fully appreciate possible alternatives or consequences. Consistency. A decision is thought to be valid when it reflects a persons true or authentic self. A persons choice of the same decision over a period of hours, days, and weeks provides evidence that the decision truly reflects the persons preference.

D.4.

D.5.

Competency 6. Apply legal and ethical principles in the analysis of complex issues related to care of older adults: informed consent, refusal of treatment, and advance directives.
A.

Informed consent: This is a legal doctrine requiring the disclosure of information about a proposed treatment before obtaining consent for its performance. Informed consent involves providing factual information, including the benefits and burdens of an action, and determining a persons understanding of that information. After being given information, a person is thought to be able to give informed consent if they: (a) can make a choice, (b) understand and appreciate the issues, (c) rationally manipulate information, and (d) make a stable and coherent decision. A.1. The following age-related changes influence or may impede the process of informed consent for older adults: A.1.1. Sensory deficits in hearing and vision A.1.2. Impaired ability to ask a question A.1.3. Both written and verbal information must be presented appropriately with opportunities to repeat and clarify content A.1.4. Values and beliefs about making health-care choices (i.e., let the doctor decide) A.1.5. Decision-making capacity that fluctuates or is diminished.

B.

Refusal of treatment: As at any age, older adults with decision-making capacity have the right to refuse treatment, even if such refusal hastens or results in their death. Determining whether the older person has the requisite capacity to refuse a particular treatment follows the process described in paragraph A above. B.1. As for all people, it is ethically and legally permissible for an older adult or their proxy to elect to try a treatment, for example, a respirator, and then to decide to discontinue it. This may occur more frequently with older adults where the potential benefits of a treatment may be less clear than with younger adults. Ethically and legally, there is no difference between never starting a therapy (such as tube feeding) and discontinuing therapy.

B.2.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE

C.

Advance Directives (AD). The Patient Self-Determination Act (PSDA) of 1990. The Omnibus budget Reconciliation Act (OBRA) was signed into law on November 5, 1990. One major component of this legislation is the Patient Self-Determination Act (PSDA), which addressed the issue of advance directives (AD). This federal law mandated all hospitals, nursing homes, home-health agencies, hospice program, and health maintenance organizations (HMOs) participating in the Medicaid and Medicare program to: (1) provide adult patients with written information concerning their right to make decisions about their care; (2) ask patients whether they have an advance directive and to record this information in the medical record; (3) maintain written policies regarding discussions of AD with adults; (4) to honor advance directives; (5) to educate patients about advance directives; (6) to conduct community education; and (7) to provide care and not discriminate against a patient whether or not the patient has executed an advance directive.

D. Advance directives allow individuals to exercise control over their bodies and direct their health-care in the event they will lack decision-making capacity at the time a medical decision needs to be made. Older adults are more likely to develop impaired decisionmaking capacity than are younger people. Thus, advance directives are very important documents for older adults. D.1. The two most commonly used Advance Directives are: (a) Living Wills; and (b) Durable Powers of Attorney for Health Care (DPOAHC), also known as a HealthCare Proxy. A combination is also used: Advance Health Care Directive.
D.2.

A Living Will provides specific instructions about the particular kinds of treatments / interventions an individual would or would not want to prolong or sustain life. Living Wills are generally used to declare wishes, to refuse, limit, or to withhold life sustaining treatment under certain circumstances should the individual lose capacity and become unable to communicate. A Durable Power of Attorney for Health Care (DPOAHC) or Health-Care Proxy (HCP) is an individual designated, and who is presumably known and trusted by the patient, to make health-care decisions for them should they lose decisionmaking capacity. The agent or surrogate can interpret the individuals wishes as medical circumstances change. A surrogate, one who makes decisions on behalf of another who is unable to make decisions for him- or herself, can be designated either informally or formally. In most formal situations, surrogates are court-appointed; they are usually called guardians or, in some states, conservators, which is a limited guardianship. State laws and terminology vary widely regarding surrogates, also called proxies or health care agents, and the scope of responsibilities and powers accorded to them. Providers and surrogates working with incapacitated people should become familiar with their states relevant laws and provisions. Although laws about guardianship vary from state to state, a guardian to the person can make medical or personal decisions; a guardian of the estate can make financial decisions, and a plenary guardian, can make all necessary decisions on behalf of the person.1

D.3.

D.4.

Kapp, M.B. (1994). Ethical aspects of guardianship. Clinical Geriatric Medicine, 10, 501-512.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE

D.5.

Advance Health Care Directive. An Advance Health Care Directive combines the features of a Living Will and a Durable Power of Attorney for Health Care along with some other options. Some states have a specific advance directive form.

D.6. Among the general public, between 15% and 25% of people have either a living will or health-care proxy. Of patients with dementia, 14% are thought to have a HCP or living will. In nursing homes, where between 44% and 70% of residents have dementia, 20% to 90% of residents have advance directives; approximately 50% have Do Not Resuscitate (DNR) orders.

Competency 3. Define ethics, bioethics, ethical dilemma, and nursing ethics.

A.

Ethics are declarations of what is right or wrong and what ought to be. Ethics is a specialized area of philosophy with origins dating back to ancient Greece. The ethical principles enunciated by Hippocrates still serve as the underpinnings of many of todays ethical issues in medicine. Ethics has its own language and terminology that are used in very precise ways. Bioethics is defined as the application of ethics to matters of life and death. Bioethics implies that a judgment should be made about the rightness or wrongness, goodness or badness, of a given medical or scientific practice. Nurses are concerned about both bioethics and ethics. An ethical dilemma can be defined as (1) a difficult problem seemingly incapable of a satisfactory solution; or (2) a situation involving a choice between two equally unsatisfactory alternatives. This is not to suggest that all dilemmas in life are ethical in nature; rather, that ethical dilemmas arise when moral claims conflict with each other. Nursing ethics refers to the application of ethical principles in nursing practice.

B.

C.

D.

Competency 4. Describe the major ethical principles that have an impact on older adults health care. There are seven key principles that underlie ethical dilemmas: autonomy, justice, beneficence, nonmaleficence, veracity, best interest standard and substituted judgment standard.
A.

Autonomy expresses the concept that professionals have a duty to treat the patient according to the patient's desires, within the bounds of accepted treatment, and to protect the patient's confidentiality. Under this principle, the health care professionals primary obligations include involving the patient in treatment decisions in a meaningful way, with due consideration being given to the patient's needs, desires and abilities, and safeguarding the patient's privacy. Autonomy is the right to self-determination, independence, and freedom. In the health-care setting it means that the health care provider is obligated to respect a

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MODULE 15. ETHICAL ISSUES OF ELDER CARE patients right to make decisions about and for him- or herself. Nurses may interfere only when they believe a person does not have sufficient information or capacity to understand, or is being coerced. Nurses have no duty to assist people to carry out damaging decisions, nor do they have a duty to assist people to harm themselves. The principle of informed consent is embedded in autonomy.
B.

Justice is the obligation to be fair to all people. Individuals have the right to be treated equally regardless of race, sex, marital status, medical diagnosis, social standing, economic level, or religious belief. The notion of justice is sometimes expanded to include equal access to health care for all. As with other rights, limits can be placed on justice when it interferes with the rights of others. Beneficence expresses the concept that professionals have a duty to act for the benefit of others. Under this principle, the health-care professionals primary obligation is service to the patient and the public-at-large. The most important aspect of this obligation is the competent and timely delivery of care within the bounds of clinical circumstances presented by the patient, with due consideration being given to the needs, desires and values of the patient. The same ethical considerations apply whether the healthcare professional engages in fee-for-service, managed care or some other practice arrangement. Beneficence is the doing good theory. It requires that health-care providers do good for patients under their care. Good care requires that the health-care provider understand the patient from a holistic perspective that includes the patients beliefs, feelings, and wishes as well as those of the patients family and significant others. Beneficence dictates more than technical competence; it involves acting in ways that demonstrate caring: listening, empathizing, supporting, nurturing, and advocating. Beneficence is the motivating force behind caring; however, beneficence is complex because it is difficult to determine what exactly is good for another and who can make the decisions about what is good.

C.

D.

Nonmaleficence is the requirement that health-care providers do no harm to their patients. This principle expresses the concept that professionals have a duty to protect the patient from harm. This principle requires that health-care providers protect those patients from harm if they cannot protect themselves. This protection is particularly evident in children and older adults as seen in abuse laws.
D.1.

Patient abandonment is an example. Once a nurse has taken started to take care of a patient, the nurse should not discontinue delivering care without obtaining the services of another caregiver. Care should be taken that the patient's health is not jeopardized in the process. Health care professionals should avoid engaging in personal relationships with their patient (s) that could impair their professional judgment or risk the possibility of exploiting the confidence placed in them by a patient. It is unethical for a health-care professional to practice while abusing controlled substances, alcohol or other chemical agents which impair the ability to

D.2.

D.3.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE practice. We have an ethical obligation to urge chemically impaired colleagues to seek treatment. Those with first-hand knowledge that a colleague is practicing their profession when so impaired have an ethical responsibility to report such evidence to the professional assistance committee of the professional society or their professional licensing board.
E.

Veracity. This principle expresses the concept that professionals have a duty to be honest and trustworthy in their dealings with people. Under this principle, the professionals primary obligations include respecting the position of trust inherent in the physician-patient, nurse-patient, and other healthcare provider-patient relationships, communicating truthfully and without deception, and maintaining intellectual integrity. Veracity or truthfulness requires that health-care providers not intentionally deceive or mislead patients. The principle is based on mutual trust and respect for human dignity. Without honesty, meaningful relationships break down. As with the other rights and obligations, there are limitations to this principle; for example, where telling patients the truth would seriously harm or would produce greater illness or goes against the cultural mores of the patient. Nonetheless, feeling uncomfortable delivering bad news is not, in and of itself, an acceptable reason for being untruthful. Substituted judgment standard is a decision made for an individual when the surrogate decision maker knows what the person would want and would actually do if they were able to communicate their wishes. Best interest standard is a decision made about an individual patients health care when the patient is unable to make an informed decision for her own care. This standard is based on what health-care providers and/or families decide is best for that individual. It is very important to consider the individuals expressed wishes, either formally in a written declaration or informally in what may have been said to a family member.

F.

G.

Competency 5. Discuss the difference between personal values and professional codes of ethics.
A.

Personal values. Most people derive their values from society. A person may internalize some or all of these, perceiving them as personal values. Nurses need to know what values patients hold about life, family, health, illness, and death. Nursing students should explore their own values and beliefs regarding: A.1. Individuals right to make decisions for self A.2. Active and passive euthanasia A.3. Blood transfusions A.4. AIDS./HIV A.5. Withholding fluids and nutrition

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MODULE 15. ETHICAL ISSUES OF ELDER CARE A.6. Cultural perspectives on life, health, death, etc. A.7. Spiritual / religious beliefs regarding death, etc. To the extent that nurses hold views in these areas that may make them unable to care for patients with different beliefs, nurses should recognize such differences. In such situations, a number of strategies may be important to enable care provision to continue including (1) acknowledge that a problem exists; (2) understand the patients perspective; (3) understand your own responses; and (4) negotiate mutually acceptable grounds for continued care. Nurses should identify supports in the community and within their institution that will enable patients to obtain the highest level of care, including, if necessary, options for transferring patients to other health-care providers if a nurse is unable to provide appropriate care while taking into account legal and ethical requirements that patients not be abandoned.
B.

Professional values are often a reflection and expansion of personal values. They are acquired during socialization into the nursing profession via the code of ethics, standards of practice, nursing experiences, teachers, and peers. A code of ethics is a formal statement that sets standards of ethical behavior for a group of people. It is a set of ethical principles that is shared by members of the group, reflects their moral judgments over time, and serves as a standard for their professional actions. It is not a static document. Rather, it is a document of statements of values reflecting social and professional change. The ANA code of ethics for nurses emphasized the principle of respect for the life and dignity of patients.

C.

Competency 6. Apply a decision-making model to an ethical dilemma in nursing practice.

A.

Nurses must understand the basis on which they make their decisions. Ethical reasoning is the process of thinking through what one ought to do in an orderly, systematic manner to provide justification of actions based on principles. Ethical decisions cannot be made in a scattered, disorganized way based entirely on intuition or emotions. Ethical decision making is a rational way of making decisions in nursing practice. It is used in situations where the correct decision is unclear or in which there are conflicts between rights and duties. A sixstep process for ethical decision making is2: A.1. Collect, analyze, and interpret the data. A.2. State the dilemma. A.3. Consider the choices of action. A.4. Analyze the advantages and disadvantages of each course of action. A.5. Make the decision.

Aiken, T. (1994). Legal, ethical, and political issues in nursing. Philadelphia: F.A. Davis Co.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE A.6. Evaluate the effectiveness of the decision. Learning Activity. Case Study # 1. Mr. L, age 71, had been a patient in the hospital for three weeks after suffering a very severe stroke. He has a tracheostomy (not ventilator dependent) and rarely leaves his bed. He has several infections that respond well to therapy. He communicates by whispering and writing. Many staff members observe that Mr. L seems depressed. He has never been treated for clinical depression. His spouse of nearly 50 years, Mrs. L, visits him faithfully during his hospitalization. She feeds him his lunch and dinner by spoon. She is a much admired visitor and often brings gifts for the staff. She is a lovely woman, truly devoted to her husband, in the words of the staff social worker. Mr. L was offered an opportunity to complete an advance directive. He chose to fill out only a Durable Power of Attorney for Health Care (DPOAHC), Health Care Proxy. He named his wife as his surrogate decision maker should he lose decisional capacity. Mr. Ls Health Care Proxy was filed in his chart. In a subsequent discussion with his physician, he requested that no cardiopulmonary resuscitation be attempted were he to suffer an arrest. The Do Not Resuscitate order was also appropriately charted. Later, however, Mr. L told his primary nurse that when the time comes, I dont want a feeding tube. I would rather starve to death. The nurse reported this statement to the physician. The physician brought up the matter the next day with both Mr. L and his wife. This time Mr. L said nothing. His wife stated, Well, you know, his mind wanders sometimes. I know that he would not want to die without food or water. Later, outside of the patients room, Mrs. L told the nurse and doctor, I dont really care what he says. He doesnt know what he wants. I could never let him die that way. We would both go straight to hell. If he does have another stroke, I will become the decision maker. So it really doesnt matter anyhow. Questions for discussion. 1. What are some ethical issues introduced in this case study? 2. Who could be involved in assisting in this situation? 3. How would you plan care for Mr. L based on the information outlined here? 4. What are any thoughts / feelings that you have about this care situation?

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MODULE 15. ETHICAL ISSUES OF ELDER CARE Case Study # 2. An 80-year-old woman is in a persistent vegetative state as a result of a CVA. She has always talked about someday signing a living will requesting that heroic measures not be taken but her family wants everything to be done that can be done. Questions for discussion. Apply the ethical analysis framework used for Mr. L to this case scenario. 1. Whose wishes should prevail? 2. Can her undocumented statements be legally honored?

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MODULE 15. ETHICAL ISSUES OF ELDER CARE RESOURCES Journals Sabatino, C. P. (1994). 10 legal myths about advance directives. American Bar Association Commission on Law and Aging. Retrieved June 14, 2004 from http://www.abanet.org/aging/myths.html Allen, R. S., DeLaine, S. R., Chaplin, W. F., et al. (2003). Advance care planning in nursing homes: Correlates of capacity and possession of advance directives. The Gerontologist, 43, 309317. Volicer, L., & Ganzini, L. (2003). Health professionals views on standards for decision-making capacity regarding refusal of medical treatment in mild Alzheimers disease. Journal of the American Geriatrics Society, 51, 1270-1274. Happ, M. B., Capezuti, E., Strumpf, N. E., et al. (2002).Advance care planning and end-of-life care for hospitalized nursing home residents. Journal of the American Geriatrics Society, 50(5), 829-835. Mezey, M., Mitty, E., & Ramsey, G. (1997). Assessment of decision-making capacity: Nurses role. Journal of Gerontological Nursing, 23(3), 28-35. Mezey, M., Teresi, J., Ramsey, G., Mitty, E., & Bobrowitz, T. (2000). Decision-making capacity to execute a health care proxy: Development and testing of guidelines. Journal of the American Geriatrics Society, 48, 179-187. Mezey, M. D., Mitty, E. L., Bottrell, M. M., Ramsey, G. C., & Fisher, T. (2000). Advance directives: Older adults with dementia. Clinics in Geriatric Medicine, 16, 255-268. Books Ramsey, G., & Mitty, E. (2003). Advance Directives: Protecting Patients Rights. In M. Mezey, T. Fulmer, I. Abraham (Eds.), D. Zwicker (Managing Ed.), Geriatric nursing protocols for best practice (2nd ed., pp. 265-291). New York: Springer Publishing Company, Inc. Flaherty, E., Fulmer, T., & Mezey, M. (2003). Geriatric nursing review syllabus: A core curriculum in advanced practice geriatric nursing. New York: American Geriatrics Society. Cotter, V. T. & Strumpf, N. E. (2001). Advance practice pursing with older adults: Clinical guidelines. New York: McGraw Hill. AGS Panel. (Updated annually). Geriatrics at your fingertips. American Geriatrics Society. Blackwell Publishing. Beers, M., & Berkow, R. (2000). The merck manual of geriatrics (3rd ed.). Whitehouse Station, NJ: Merck and Company.

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MODULE 15. ETHICAL ISSUES OF ELDER CARE Mezey, M. D. (Editor in Chief), Berkman, B. J., Callahan, C. M., Fulmer, T. T, Mitty, E. L., Paveza, G. J., Siegler, E. L., & Strumpf, N. E. (Eds.); Bottrell, M. M. (Managing Ed.). (2001). The encyclopedia of elder care. New York: Springer Publishing Company, Inc. Karp, N., & Wood, E. (2003). Incapacitated and alone: Health care decision-making for the unbefriended elderly. American Bar Association Commission on Law and Aging. (PC #H443/ABA PC# 4280022). $25 per copy. Email: abaaging@abanet.org; (202) 662-8690. Mezey, M. D., & Dubler, N. N. (Eds.); Mitty, E. (Managing Ed.). (2001). Voices of decision in nursing homes: Respecting residents' preferences for end-of-life care. New York: United Hospital Fund of New York. Tools There are no tools to assess readiness for creating an advance directive document. Some of the journal articles can be helpful with regard to understanding the capacity needed to create a Health Care Proxy and Living Will and the attendant risks. Edmonton Assessment Tools: To measure discomfort and symptoms of dying patients. Developed by the Edmonton Palliative Care Program, Edmonton, Alberta, Canada. Home Page: www.palliative.org Various Assessment Tools: Retrieved June 14, 2004 from http://www.palliative.org/PC/ClinicalInfo/AssessmentTools/AssessmentToolsIDX.html Related Professional Organizations American Nurses Association. Home Page: www.nursingworld.org (202) 651-7055 Code for Nurses with Interpretive Statements Position Statements on Assisted Suicide and Active Euthanasia, Do-Not-Resuscitate, Comfort and Relief, Patient Self-Determination Act. Retrieved June 14, 2004 from http://www.nursingworld.org/readroom/position/index.htm#ethics Selected bibliographies on ethical issues The American Association of Nurse Attorneys (TAANA). http://www.taana.org/ AGS Geriatrics At Your Fingertips Online Edition - http://www.geriatricsatyourfingertips.org/ Nurse Competence in Aging (NCA): http://www.hartfordign.org/nca/index.html Oregon Health Sciences University School of Nursing: The John A. Hartford Foundation Center of Geriatric Nursing Excellence: http://www.ohsu.edu/hartfordcgne/ The John A. Hartford Institute for Geriatric Nursing: Geriatric Web Sites: http://www.hartfordign.org/pdf/geriatric_websites.pdf The Merck Institute of Aging and Health Home Page: http://www.miahonline.org/index.html List of high quality studies on advance directives: Retrieved June 14, 2004 from http://www.miahonline.org/resources/bibliographies/content/AdvanceDirectives.html

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MODULE 15. ETHICAL ISSUES OF ELDER CARE The Registered Nurses Association of Ontario (RNAO) Nursing Best Practice Guidelines (NBPG) Project. Retrieved June 6, 2004, from http://www.rnao.org/bestpractices/about/bestPractice_overview.asp University of Arkansas for Medical Sciences College of Nursing: The John A. Hartford Center of Nursing Excellence: http://hartfordcenter.uams.edu/ University of Iowa College of Nursing: The John A. Hartford Center of Nursing Excellence: http://www.nursing.uiowa.edu/hartford/index.htm University of Pennsylvania School of Nursing: Hartford Center of Geriatric Nursing Excellence: http://www.nursing.upenn.edu/centers/hcgne/about.htm Government Information Agencies National Guideline Clearinghouse/Agency for Healthcare Research and Quality. (1999). Evidence-based protocol: Advance directives. Retrieved June 14, 2004, from http://www.guideline.gov/summary/summary.aspx? doc_id=2191&nbr=1417&string=advance+AND+directives National Guideline Clearinghouse/Agency for Healthcare Research and Quality. (2003). Advance directives: Protecting patients rights. Retrieved June 14, 2004, from http://www.guideline.gov/summary/summary.aspx? doc_id=3516&nbr=2742&string=advance+AND+directives The Department of Health (DOH) Office of Emergency Medical Services & Trauma System (OEMSTS) in conjunction with the Washington State Medical Association (WSMA). (Last update Nov 19, 2003). Physician Orders for Life Sustaining Treatment (POLST). The revised POLST form is an accepted advance directive in a growing number of states. It contains the patients wishes for resuscitation, medical interventions, antibiotics, and artificial feedings. Retrieved June 14, 2004 from http://www.doh.wa.gov/hsqa/emtp/resuscitation.htm United States Department of Health and Human Services: Aging: http://www.hhs.gov/aging/index.shtml Regulatory/Authoritative sites American Geriatrics Society. (2001). Guidelines and Position Statements: http://www.americangeriatrics.org/products/positionpapers/ AGS Ethics Committee. (Last updated May 1998). Making treatment decisions for incapacitated elderly patients without advance directives. Retrieved June 14, 2004 from http://www.americangeriatrics.org/products/positionpapers/treatdec.shtml AGS Ethics Committee. (Last updated Nov 2002). Physician assisted suicide and voluntary active euthanasia. Retrieved June 14, 2004 from http://www.americangeriatrics.org/products/positionpapers/vae94.shtml American Medical Directors Association (AMDA). (2004). Resource Library:

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MODULE 15. ETHICAL ISSUES OF ELDER CARE http://www.amda.com/library/ White Pages: http://www.amda.com/library/whitepapers/index.htm Policy Papers and Position Statements: http://www.amda.com/library/governance/resolutions/index.htm National Conference of Gerontological Nurse Practitioners: Home Page: http://www.ncgnp.org National Gerontological Nursing Association: Home Page: http://www.ngna.org/ The Gerontological Society of America: Home Page: http://www.geron.org/ United States Department of Health and Human Services: Home Page: http://www.hhs.gov/ Continuing Education ADVANCE Newsmagazines: Home Page: http://www.advanceweb.com/ ADVANCE Continuing Education Website: http://www.advanceweb.com/ce.asp American Association of Colleges of Nursing. End-of-Life Nursing Education Consortium (ELNEC). Retrieved June 14, 2004 from http://www.aacn.nche.edu/ELNEC/index.htm (202) 785-8320. ANA Continuing Ed Online Education: http://nursingworld.org/ce/cehome.cfm Medcom-Trainex - Various Gerontological Nursing topics: http://www.medcominc.com/ Medscape from WebMD: Nurses CE Center: http://www.medscape.com/cmecenterdirectory/nurses?src=hdr National Association of Geriatric Education Centers: http://www.hcoa.org/nagec/ New York University, Steinhardt School of Education, Division of Nursing, Center for Continuing Education: http://www.nyu.edu/education/nursingnew/institutes.html Online ceus: A directory for nurses. Geriatric Classes Online: http://www.nurseceu.com/geri.htm New York State Nurses Association. (2001). Advance directives: Patient self determination. Sigma Theta Tau International Honor Society of Nursing: Continuing Education: http://www.nursingsociety.org/education/ceonline_activities.html The John A. Hartford Foundation Institute for Geriatric Nursing: Gerontological Nursing Certification Review Course http://www.nyu.edu/education/nursing/hartford.institute/course/ University of Iowa College of Nursing: Continuing Education: http://www.nursing.uiowa.edu/conted/conferences.htm#1 University of Pennsylvania School of Nursing: Continuing Education: http://www.nursing.upenn.edu/ce/ Nurse Training Materials Toolkit for Nursing Excellence at End of Life transition (TNEEL). These tools, for palliative

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MODULE 15. ETHICAL ISSUES OF ELDER CARE care education, are provided by the University of Washington. http://www.tneel.uic.edu/tneel.asp Geriatric Video Productions: www.geriatricvideo.com Nursing Spectrum Education/CE: Self-Study Modules: http://www.nursingspectrum.com/ContinuingEducation/NSSelfStudy/index.cfm The John A. Hartford Institute for Geriatric Nursing: Best Nursing Practices in Care of Older Adults: http://www.hartfordign.org/resources/education/curriculumGuide.html The John A. Hartford Institute for Geriatric Nursing (2003). Partners for Dissemination of Best Nursing Practices in Care of Older Adults. http://www.hartfordign.org/resources/education/bsnPartners.html Consumer Resources Aging with Dignity. Five wishes advance directive. Legally accepted in 31 states and growing, this advance directive combines features of a health Care Proxy and Living Will. It also lets family and physician know the comfort measures a person wants (i.e., pain and symptom relief); how the person wants to be treated (e.g., have someone hold their hand; read to them); what they want their loved ones to know (about forgiving and forgiveness; about fear and peacefulness). The document is distributed by many houses of worship, healthcare and legal professionals, social service agencies, employers. www.agingwithdignity.org American Association for Retired People. AARP Legal Counsel for the Elderly. This website has a range of documents that would be helpful for the patient, family and health care provider. Topics include: differentiating between a living will and medical or health care power of attorney; how to get conversation going in talking about care at the end of life. Home Page: www.aarp.org Search for Advance Directives. Retrieved June 14, 2004 from http://search.aarp.org/cgibin/htsearch? config=htdig_www_aarp_org&restrict=&exclude=research.aarp.org+www.aarpmagazine.org+w ww.faar.org&words=advance+directives (202) 434-2277. American Bar Association Commission on Law and Aging. Consumers tool kit for health care advance planning. The Tool Kit focuses on and clarifies issues regarding health care agent or proxy selection, after death decisions that have to be considered before death; a guide for health care agents; etc. The 10 tools are PDF files. Home Page: www.abanet.org/aging/ Tool Kit: Retrieved June 14, 2004 from http://www.abanet.org/aging/toolkit/home.html Department of Health and Human Services, Centers for Disease Control and Prevention: Home Page: http://www.cdc.gov/ Health Sciences Ethics Program, University of New Mexico. (June 1998). Values history form packet. Can assist the patient/client/consumer identify and talk about what is important to him/her with regard to goals for the future; sources of pleasure and meaning; the role of family and friends; the value and importance of being independent; spiritual beliefs; relationships with the health professions; thoughts about illness, dying and death; finances; funeral plans. www.unm.edu/~hsethics/valueshist.htm

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Last Acts. Home Page: www.nhpco.org Fact Sheets: (2001). Thinking Ahead: Advance planning foe end-of-life care (2001). Decision making isnt just a family matter: Legal issues in end-of-life care (2001). When patients cannot eat or drink: Artificial Nutrition and Hydration (2001). Care beyond Cure: Palliative care and Hospice. http://www.lastacts.org/scripts/la_res01.exe?FNC=FactSheets__Ala_res_NewHome_html This website also describes State Initiatives on End of Life CareFocus: Pain management. National Institutes of Health: Health Information: http://health.nih.gov/ Nusbaum, N. J., & Goldstein, M. K. (Updated Jan 31, 2001). Advance directives. The American Geriatrics Society, Patient Education Forum. From a patients perspective, questions and answers about creating an advance directive, why it is important and useful to have one. Language is jargon-free; answers are concise and to the point. http://www.healthinaging.org/public_education/pef/advance_directives.php Partnership for Caring. (2001). Frequently asked questions. Retrieved June 14, 2004 from http://www.partnershipforcaring.org/Advance/faq_set.html Q and A: Advance Directives and End-of-Life Decisions; Medical treatments and Your Advance Directives; Artificial Nutrition and Hydration; DNR Orders. The Judge David L. Bazelon Center for Mental Health Law. (2003). Advance psychiatric directives. Less common than HCP and LW, this type of advance directive is suggested for those who are concerned about involuntary psychiatric commitment or treatment at some future time. The official name of such a document is advance directive for mental health decision making. The document includes aspect of proxy decision making and instructions with regard to desired or not wanted treatments. www.bazelon.org/issues/advancedirectives/ U.S. National Library of Medicine and National Institutes of Health: Medline Plus Links to multiple governmental, private, and professional web sites: http://www.nlm.nih.gov/medlineplus/ List of health topics that include advance directives. Retrieved June 14, 2004 from http://search.nlm.nih.gov/medlineplus/query? DISAMBIGUATION=true&FUNCTION=search&SERVER2=server2&SERVER1=server1&P ARAMETER=ADVANCE+DIRECTIVES LISTSERVS: None at this time.

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