ETHICS AND VALUES

THE EXPERIENCE OF LOSS

 

Code of Ethics for Nurses

Ethics is an integral part of the foundation of nursing. Nursing has a distinguished history of concern for the welfare of the sick, injured, and vulnerable and for social justice. This concern is embodied in the provision of nursing care to individuals and the community. Nursing encompasses the prevention of illness, the alleviation of suffering, and the protection, promotion, and restoration of health in the care of individuals, families, groups, and communities. Nurses act to change those aspects of social structures that detract from health and well-being. Individuals who become nurses are expected not only to adhere to the ideals and moral norms of the profession but also to embrace them as a part of what it means to be a nurse. The ethical tradition of nursing is self-reflective, enduring, and distinctive. A code of ethics makes explicit the primary goals, values, and obligations of the profession.

 

The Code of Ethics for Nurses serves the following purposes:

1. It is a succinct statement of the ethical obligations and duties of every individual who enters the nursing profession.

2.It is the profession’s nonnegotiable ethical standard.

3.It is an expression of nursing’s own understanding of its commitment to society.

 

The Code of Ethics for Nurses is a dynamic document. As nursing and its social context change, changes to the Code of Ethics are also necessary. The Code of Ethics consists of two components: the provisions and the accompanying interpretive statements. There are nine provisions. The first three describe the most fundamental values and commitments of the nurse; the next three address boundaries of duty and loyalty, and the last three address aspects of duties beyond individual patient encounters. For each provision, there are interpretive statements that provide greater specificity for practice and are responsive to the contemporary context of nursing. Consequently, the interpretive statements are subject to more frequent revision than are the provisions. Additional ethical guidance and detail can be found in ANA or constituent member association position statements that address clinical, research, administrative, educational, or public policy issues. 

Provision 1.

The nurse, in all professional relationships, practices with compassion and respect for the inherent dignity, worth, and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems.

1.1 Respect for human dignity –

A fundamental principle that underlies all nursing practice is respect for the inherent worth, dignity, and human rights of every individual. Nurses take into account the needs and values of all persons in all professional relationships.

1.2 Relationships to patients –

The need for health care is universal, transcending all individual differences.

The nurse establishes relationships and delivers nursing services with respect for humaeeds and values, and without prejudice. An individual’s lifestyle, value system and religious beliefs should be considered in planning health care with and for each patient. Such consideration does not suggest that the nurse necessarily agrees with or condones certain individual choices, but that the nurse respects the patient as a person.

1.3 The nature of health problems –

The nurse respects the worth, dignity and rights of all human beings irrespective of the nature of the health problem. The worth of the person is not affected by disease, disability, functional status, or proximity to death. This respect extends to all who require the services of the nurse for the promotion of health, the prevention of illness, the restoration of health, the alleviation of suffering, and the provision of supportive care to those who are dying.

The measures nurses take to care for the patient enable the patient to live with as much physical, emotional, social, and spiritual well-being as possible. Nursing care aims to maximize the values that the patient has treasured in life and extends supportive care to the family and significant others. Nursing care is directed toward meeting the comprehensive needs of patients and their families across the continuum of care.

This is particularly vital in the care of patients and their families at the end of life to prevent and relieve the cascade of symptoms and suffering that are commonly associated with dying.

 

Nurses are leaders and vigilant advocates for the delivery of dignified and humane care. Nurses actively participate in assessing and assuring the responsible and appropriate use of interventions in order to minimize unwarranted or unwanted treatment and patient suffering. The acceptability and importance of carefully considered decisions regarding resuscitation status, withholding and withdrawing life-sustaining therapies, forgoing medically provided nutrition and hydration, aggressive pain and symptom management and advance directives are increasingly evident. The nurse should provide interventions to relieve pain and other symptoms in the dying patient even when those interventions entail risks of hastening death. However, nurses may not act with the sole intent of ending a patient’s life even though such action may be motivated by compassion, respect for patient autonomy and quality of life considerations. Nurses have invaluable experience, knowledge, and insight into care at the end of life and should be actively involved in related research, education, practice, and policy development.

 

1.4 The right to self-determination –

Respect for human dignity requires the recognition of specific patient

rights, particularly, the right of self-determination. Self-determination, also known as autonomy, is the philosophical basis for informed consent in health care. Patients have the moral and legal right to determine what will be done with their own person; to be given accurate, complete, and understandable information in a manner that facilitates an informed judgment; to be assisted with weighing the benefits, burdens, and available options in their treatment, including the choice of no treatment; to accept, refuse, or terminate treatment without deceit, undue influence, duress, coercion, or penalty; and to be giveecessary support throughout the decision-making and treatment process. Such support would include the opportunity to make decisions with family and significant others and the provision of advice and support from knowledgeable nurses and other health professionals.  Patients should be involved in planning their own health care to the extent they are able and choose to participate.

Each nurse has an obligation to be knowledgeable about the moral and legal rights of all patients to self-determination. The nurse preserves, protects, and supports those interests by assessing the patient’s comprehension of both the information presented and the implications of decisions. In situations in which the patient lacks the capacity to make a decision, a designated surrogate decision-maker should be consulted. The role of the surrogate is to make decisions as the patient would, based upon the patient’s previously expressed wishes and known values. In the absence of a designated surrogate decision-maker, decisions should be made in the best interests of the patient, considering the patient’s personal values to the extent that they are known.

 

The nurse supports patient self-determination by participating in discussions with surrogates, providing guidance and referral to other resources as necessary, and identifying and addressing problems in the decision-making process. Support of autonomy in the broadest sense also includes recognition that people of some cultures place less weight on individualism and choose to defer to family or community values in decision-making. Respect not just for the specific decision but also for the patient’s method of decision-making is consistent with the principle of autonomy.

Individuals are interdependent members of the community. The nurse recognizes that there are situations in which the right to individual self-determination may be outweighed or limited by the rights, health and welfare of others, particularly in relation to public health considerations. Nonetheless, limitation of individual rights must always be considered a serious deviation from the standard of care, justified only when there are no less restrictive means available to preserve the rights of others and the demands of justice.

 

1.5 Relationships with colleagues and others –

The principle of respect for persons extends to all individuals with whom the nurse interacts.

 

NursingWorld Code of Ethics colleagues and others with a commitment to the fair treatment of individuals, to integrity-preserving compromise, and to resolving conflict. Nurses function in many roles, including direct care provider, dministrator, educator, researcher, and consultant. In each of these roles, the nurse treats colleagues, employees, assistants, and students with respect and compassion. This standard of conduct precludes any and all prejudicial actions, any form of harassment or threatening behavior, or disregard for the effect of one’s actions on others. The nurse values the distinctive contribution of individuals or groups, and collaborates to meet the shared goal of providing quality health services.

Provision 2

The nurse’s primary commitment is to the patient, whether an individual, family, group, or community.

 

2.1 Primacy of the patient’s interests –

The nurse’s primary commitment is to the recipient of nursing and health care services –the patient–whether the recipient is an individual, a family, a group, or a community. Nursing holds a fundamental commitment to the uniqueness of the individual patient; therefore, any plan of care must reflect that uniqueness. The nurse strives to provide patients with opportunities to participate in planning care, assures that patients find the plans acceptable and supports the  implementation of the plan. Addressing patient interests requires recognition of the patient’s place in the family or other networks of relationship. When the patient’s wishes are in conflict with others, the nurse seeks to help resolve the conflict. Where conflict persists,  the nurse’s commitment remains to the identified patient.

 

2.2 Conflict of interest for nurses –

Nurses are frequently put in situations of conflict arising from competing loyalties in the workplace, including situations of conflicting expectations from patients, families, physicians, colleagues, and in many cases, health care organizations and health plans. Nurses must examine the conflicts arising between their own personal and professional values, the values and interests of others who are also responsible for patient care and health care decisions, as well as those of patients. Nurses strive to resolve such conflicts in ways that ensure patient safety, guard the patient’s best interests and preserve the professional integrity of the nurse.

 

Situations created by changes in health care financing and delivery systems, such as incentive systems to decrease spending, pose new possibilities of conflict between economic self-interest and professional integrity.

The use of bonuses, sanctions, and incentives tied to financial targets are examples of features of health care systems that may present such conflict. Conflicts of interest may arise in any domain of nursing activity including clinical practice, administration, education, or research. Advanced practice nurses who bill directly for services and nursing executives with budgetary responsibilities must be especially cognizant of the potential for conflicts of interest. Nurses should disclose to all relevant parties (e.g., patients, employers, colleagues) any perceived or actual conflict of interest and in some situations should withdraw from further participation. Nurses in all roles must seek to ensure that employment rrangements are just and fair and do not create an unreasonable conflict between patient care and direct personal gain.

 

2.3 Collaboration –

Collaboration is not just cooperation, but it is the concerted effort of individuals and groups to attain a shared goal. In health care, that goal is to address the health needs of the patient and the public. The complexity of health care delivery systems requires a multi-disciplinary approach to the delivery of services that has the strong support and active participation of all the health professions. Within this context, nursing’s unique contribution, scope of practice, and relationship with other health professions needs to be clearly articulated, represented and preserved. By its very nature, collaboration requires mutual trust, recognition, and respect among the health care team, shared decision-making about patient care, and open dialogue among all parties who have an interest in and a concern for health outcomes. Nurses should work to assure that the relevant parties are involved and have a voice in decision-making about patient care issues. Nurses should see that the  questions that need to be addressed are asked and that the informatioeeded for informed decision-making is available and provided. Nurses should actively promote the collaborative multi-disciplinary planning required to ensure the availability and accessibility of quality health services to all persons who have needs for health care.

Intra-professional collaboration withiursing is fundamental to effectively addressing the health needs of patients and the public. Nurses engaged ion-clinical roles, such as administration or research, while not providing direct care, nonetheless are collaborating in the provision of care through their influence and direction of those who do. Effective nursing care is accomplished through the interdependence of nurses in differing roles–those who teach the needed skills, set standards, manage the environment of care, or expand the boundaries of knowledge used by the profession. In this sense, nurses in all roles share a responsibility for the outcomes of nursing care.

 

2.4 Professional boundaries –

When acting within one’s role as a professional, the nurse recognizes and

maintains boundaries that establish appropriate limits to relationships. While the nature of nursing work has an inherently personal component, nurse-patient relationships and nurse-colleague relationships have, as their foundation, the purpose of preventing illness, alleviating suffering, and protecting, promoting, and restoring the health of patients. In this way, nurse-patient and nurse-colleague relationships differ from those that are purely personal and unstructured, such as friendship. The intimate nature of nursing care, the involvement of nurses is

important and sometimes highly stressful life events, and the mutual dependence of colleagues working in close concert all present the potential for blurring of limits to professional relationships. Maintaining authenticity and expressing oneself as an individual, while remaining within the bounds established by the purpose of the relationship can be especially difficult in prolonged or long-term relationships. In all encounters, nurses are responsible for retaining their professional boundaries. When those professional boundaries are jeopardized, the nurse should seek assistance from peers or supervisors or take appropriate steps to remove her/himself from the situation.

 

Provision 3

The nurse promotes, advocates for, and strives to protect the health, safety, and

rights of the patient.

 

3.1 Privacy –

The nurse safeguards the patient’s right to privacy. The need for health care does not justify unwanted intrusion into the patient’s life. The nurse advocates for an environment that provides for sufficient physical privacy, including auditory privacy for discussions of a personal nature and policies and practices that

protect the confidentiality of information.

 

3.2 Confidentiality –

Associated with the right to privacy, the nurse has a duty to maintain onfidentiality of all patient information. The patient’s well-being could be jeopardized and the fundamental trust between patient and nurse destroyed by unnecessary access to data or by the inappropriate disclosure of identifiable patient information. The rights, well-being, and safety of the individual patient should be the primary actors in arriving at any professional judgment concerning the disposition of confidential information received from or about the patient, whether oral, written or electronic. The standard of nursing practice and the nurse’s responsibility to provide quality care require that relevant data be shared with those members of the health care eam who have a need to know. Only information pertinent to a patient’s treatment and welfare is disclosed, and only to those directly involved with the patient’s care. Duties of confidentiality, however, are not absolute and may need to be modified in order to protect the patient, other innocent parties and in circumstances of mandatory disclosure for public health reasons.

Information used for purposes of peer review, third-party payments, and other quality improvement or risk management mechanisms may be disclosed only under defined policies, mandates, or protocols. These written guidelines must assure that the rights, well-being, and safety of the patient are protected. In general, only that information directly relevant to a task or specific responsibility should be disclosed. When using electronic communications, special effort should be made to maintain data security.

 

3.3 Protection of participants in research –

Stemming from the right to self-determination, each individual has the right to hoose whether or not to participate in research. It is imperative that the patient or legally authorized surrogate receive sufficient information that is material to an informed decision, to comprehend that information, and to know how to iscontinue participation in research without penalty. Necessary information to achieve an adequately informed consent includes the nature of participation, potential harms and benefits, and available alternatives to taking part in the research. Additionally, the patient should be informed of how the data will be protected. The patient has the right to refuse to participate in research or to withdraw at any time without fear of adverse consequences or reprisal.

 

Research should be conducted and directed only by qualified persons. Prior to implementation, all research should be approved by a qualified review board to ensure patient protection and the ethical integrity of the research. Nurses should be cognizant of the special concerns raised by research involving vulnerable groups, including children, prisoners, students, the elderly, and the poor. The nurse who participates in research in any capacity should be fully informed about both the subject’s and the nurse’s rights and obligations in the particular research study and in research in general. Nurses have the duty to question and, if necessary, to report and to refuse to participate in research they deem morally objectionable.

 

3.4 Standards and review mechanisms –

Nursing is responsible and accountable for assuring that only those individuals who have demonstrated the knowledge, skill, practice experiences, commitment, and integrity essential to professional practice are allowed to enter into and continue to practice within the profession. Nurse educators have a responsibility to ensure that basic competencies are achieved and to promote a commitment to professional practice prior to entry of an individual into practice. Nurse administrators are responsible for assuring that the knowledge and skills of each nurse in the workplace are assessed prior to the assignment of responsibilities requiring preparation beyond basic academic programs.

The nurse has a responsibility to implement and maintain standards of professional nursing practice. The nurse should participate in planning, establishing, implementing, and evaluating review mechanisms designed to safeguard patients and nurses, such as peer review processes or committees, credentialing processes, quality improvement initiatives, and ethics committees. Nurse administrators must ensure that nurses have access to and inclusion on institutional ethics committees. Nurses must bring forward difficult issues related to patient care and/or institutional constraints upon ethical practice for discussion and review. The nurse acts to promote inclusion of appropriate others in all deliberations related to patient care.

 

Nurses should also be active participants in the development of policies and review mechanisms designed to promote patient safety, reduce the likelihood of errors, and address both environmental system factors and human factors that present increased risk to patients. In addition, when errors do occur, nurses are expected to follow institutional guidelines in reporting errors committed or observed to the appropriate supervisory personnel and for assuring responsible disclosure of errors to patients. Under no circumstances should the nurse participate in, or condone through silence, either an attempt to hide an error or a punitive response that serves only to fix blame rather than correct the conditions that led to the error.

3.5 Acting on questionable practice –

The nurse’s primary commitment is to the health, well-being, and safety of the patient across the life span and in all settings in which health care needs are addressed. As an advocate for the patient, the nurse must be alert to and take appropriate action regarding any instances of incompetent, unethical, illegal, or impaired practice by any member of the health care team or the health care system or any action on the part of others that places the rights or best interests of the patient in jeopardy. To function effectively in this role, nurses must be knowledgeable about the Code of Ethics, standards of practice of the profession, relevant federal, state and local laws and regulations, and the employing organization’s policies and procedures.

 

When the nurse is aware of inappropriate or questionable practice in the provision or denial of health care, concern should be expressed to the person carrying out the questionable practice. Attention should be called to the possible detrimental affect upon the patient’s well-being or best interests as well as the integrity of nursing practice. When factors in the health care delivery system or health care organization threaten the welfare of the patient, similar action should be directed to the responsible administrator. If indicated, the problem should be reported to an appropriate higher authority within the institution or agency, or to an appropriate external authority.

 

There should be established processes for reporting and handling incompetent, unethical, illegal, or impaired practice within the employment setting so that such reporting can go through official channels, thereby reducing the risk of reprisal against the reporting nurse. All nurses have a responsibility to assist those who identify potentially questionable practice. State nurses associations should be prepared to provide assistance and support in the development and evaluation of such processes and reporting procedures.When incompetent, unethical, illegal, or impaired practice is not corrected within the employment setting and continues to jeopardize patient well-being and safety, the problem should be reported to other appropriate authorities such as practice committees of  the pertinent professional organizations, the legally constituted bodies concerned with licensing of specific categories of health workers and professional practitioners, or the regulatory agencies concerned with evaluating standards or practice. Some situations may warrant the concern and involvement of all such groups.

Accurate reporting and factual documentation, and not merely opinion, undergird all such responsible actions. When a nurse chooses to engage in the act of responsible reporting about situations that are perceived as unethical, incompetent, illegal, or impaired, the professional organization has a responsibility to provide the nurse with support and assistance and to protect the practice of those nurses who choose to voice their concerns. Reporting unethical, illegal, incompetent, or impaired practices, even when done appropriately, may present substantial risks to the nurse; nevertheless, such risks do not eliminate the obligation to address serious threats to patient safety.

 

3.6 Addressing impaired practice –

Nurses must be vigilant to protect the patient, the public and the profession from potential harm when a colleague’s practice, in any setting, appears to be impaired. The nurse extends compassion and caring to colleagues who are in recovery from illness or when illness interferes with job performance. In a situation where a nurse suspects another’s practice may be impaired, the nurse’s duty is to take action designed both to protect patients and to assure that the impaired individual receives assistance in regaining optimal function. Such action should usually begin with consulting supervisory personnel and may also include confronting the individual in a supportive manner and with the assistance of others or helping the individual to access appropriate resources.

Nurses are encouraged to follow guidelines outlined by the profession and policies of the employing organization to assist colleagues whose job performance may be adversely affected by mental or physical illness or by personal circumstances. Nurses in all roles should advocate for colleagues whose job performance may be impaired to ensure that they receive appropriate assistance, treatment and access to fair institutional and legal processes. This includes supporting the return to practice of the individual who has sought assistance and is ready to resume professional duties.

 

If impaired practice poses a threat or danger to self or others, regardless of whether the individual has sought help, the nurse must take action to report the individual to persons authorized to address the problem. Nurses who advocate for others whose job performance creates a risk for harm should be protected from negative consequences. Advocacy may be a difficult process and the nurse is advised to follow workplace policies. If workplace policies do not exist or are inappropriate–that is, they deny the nurse in question access to due legal process or demand resignation–the reporting nurse may obtain guidance from the professional association, state peer assistance programs, employee assistance program or a similar resource.

 

Provision 4

The nurse is responsible and accountable for individual nursing practice and determines the appropriate delegation of tasks consistent with the nurse’s obligation to provide optimum patient care.

 

4.1 Acceptance of accountability and responsibility –

Individual registered nurses bear primary responsibility for the nursing care that their patients receive and are individually accountable for their own practice. Nursing practice includes direct care activities, acts of delegation, and other responsibilities such as teaching, research, and administration. In each instance, the nurse retains accountability and responsibility for the quality of practice and for conformity with standards of care.

 

Nurses are faced with decisions in the context of the increased complexity and changing patterns in the delivery of health care. As the scope of nursing practice changes, the nurse must exercise judgment in accepting responsibilities, seeking consultation, and assigning activities to others who carry out nursing care. For example, some advanced practice nurses have the authority to issue prescription and treatment orders to be carried out by other nurses. These acts are not acts of delegation. Both the advanced practice nurse issuing the order and the nurse accepting the order are responsible for the judgments made and accountable for the actions taken.

 

4.2 Accountability for nursing judgment and action

Accountability means to be answerable to oneself and others for one’s own actions. In order to be accountable, nurses act under a code of ethical conduct that is grounded in the moral principles of fidelity and respect for the dignity, worth, and self-determination of patients. Nurses are accountable for judgments made and actions taken in the course of nursing practice, irrespective of health care organizations’ policies or providers’ directives.

 

4.3 Responsibility for nursing judgment and action –

Responsibility refers to the specific accountability or liability associated with the performance of duties of a particular role. Nurses accept or reject specific role

demands based upon their education, knowledge, competence, and extent of experience. Nurses in administration, education, and research also have obligations to the recipients of nursing care. Although nurses in administration, education, and research have relationships with patients that are less direct, in assuming the responsibilities of a particular role, they share responsibility for the care provided by those whom they supervise and instruct. The nurse must not engage in practices prohibited by law or delegate activities to others that are prohibited by the practice acts of other health care providers.

 

Individual nurses are responsible for assessing their own competence. When the needs of the patient are beyond the qualifications and competencies of the nurse, consultation and collaboration must be sought from qualified nurses, other health professionals, or other appropriate sources. Educational resources should be sought by nurses and provided by institutions to maintain and advance the competence of nurses. Nurse educators act in collaboration with their students to assess the learning needs of the student, the effectiveness of the teaching program, the identification and utilization of appropriate resources, and the support needed for the learning process.

 

4.4 Delegation of nursing activities

Since the nurse is accountable for the quality of nursing care given to patients, nurses are accountable for the assignment of nursing responsibilities to other nurses and the delegation of nursing care activities to other health care workers. While delegation and assignment are used here in a generic moral sense, it is understood that individual states may have a particular legal definition of these

terms. The nurse must make reasonable efforts to assess individual competence when assigning selected components of nursing care to other health care workers. This assessment involves evaluating the knowledge, skills, and experience of the individual to whom the care is assigned, the complexity of the assigned tasks, and the health status of the patient. The nurse is also responsible for monitoring the activities of these individuals and evaluating the quality of the care provided.

 

Nurses may not delegate responsibilities such as assessment and evaluation;

they may delegate tasks. The nurse must not knowingly assign or delegate to any member of the nursing team a task for which that person is not prepared or qualified. Employer policies or directives do not relieve the nurse of responsibility for making judgments about the delegation and assignment of nursing care tasks.

 

Nurses functioning in management or administrative roles have a particular responsibility to provide an environment that supports and facilitates appropriate assignment and delegation. This includes providing appropriate orientation to staff, assisting less experienced nurses in developing necessary skills and competencies, and establishing policies and procedures that protect both the patient and nurse from the inappropriate assignment or delegation of nursing responsibilities, activities, or tasks.

 

Nurses functioning in educator or preceptor roles may have less direct relationships with patients. However, through assignment of nursing care activities to learners they share responsibility and accountability for the care provided. It is imperative that the knowledge and skills of the learner be sufficient to provide the assigned nursing care and that appropriate supervision be provided to protect both the patient and the learner.

 

Provision 5

The nurse owes the same duties to self as to others, including the responsibility to preserve integrity and safety, to maintain competence, and to continue personal and professional growth.

 

5.1 Moral self-respect –

Moral respect accords moral worth and dignity to all human beings irrespective of  their personal attributes or life situation. Such respect extends to oneself as well; the same duties that we owe to others we owe to ourselves. Self-regarding duties refer to a realm of duties that primarily concern oneself and include professional growth and maintenance of competence, preservation of wholeness of character, and personal integrity.

 

5.2 Professional growth and maintenance of competence –

Though it has consequences for others, maintenance of competence and ongoing professional growth involves the control of one’s own conduct in a way that is primarily self-regarding. Competence affects one’s self-respect, self-esteem, professional status, and the meaningfulness of work. In all nursing roles, evaluation of one’s own performance, coupled with peer review, is a means by which nursing practice can be held to the highest standards. Each nurse is responsible for participating in the development of criteria for evaluation of practice and for using those criteria in peer and self-assessment. Continual professional growth, particularly in knowledge and skill, requires a commitment to lifelong learning.

 

Such learning includes, but is not limited to, continuing education, networking with professional colleagues, self-study, professional reading, certification, and seeking advanced degrees. Nurses are required to have knowledge relevant to the current scope and standards of nursing practice, changing issues, concerns, controversies, and ethics. Where the care required is outside the competencies of the individual nurse, consultation should be sought or the patient should be referred to others for appropriate care.

5.3 Wholeness of character –

Nurses have both personal and professional identities that are neither entirely

separate, nor entirely merged, but are integrated. In the process of becoming a professional, the nurse embraces the values of the profession, integrating them with personal values. Duties to self involve an authentic expression of one’s own moral point-of-view in practice. Sound ethical decision-making requires the respectful and open exchange of views between and among all individuals with relevant interests. In a community of moral discourse, no one person’s view should automatically take precedence over that of another. Thus the nurse has a responsibility to express moral perspectives, even when they differ from those of others, and even when they might not prevail.

 

This wholeness of character encompasses relationships with patients. In situations where the patient requests a personal opinion from the nurse, the nurse is generally free to express an informed personal opinion as long as this preserves the voluntariness of the patient and maintains appropriate professional and moral boundaries. It is essential to be aware of the potential for undue influence attached to the nurse’s professional role. Assisting patients to clarify their own values in reaching informed decisions may be helpful in avoiding unintended persuasion. In situations where nurses’ responsibilities include care for those whose personal attributes, condition, lifestyle or situation is stigmatized by the community and are personally unacceptable, the nurse still renders respectful and skilled care.

 

5.4 Preservation of integrity –

Integrity is an aspect of wholeness of character and is primarily a self-concern of the individual nurse. An economically constrained health care environment resents the nurse with particularly troubling threats to integrity. Threats to integrity may include a request to deceive a patient,to withhold information, or to falsify records, as well as verbal abuse from patients or coworkers. Threats to integrity also may include an expectation that the nurse will act in a way that is inconsistent with the values or ethics of the profession, or more specifically a request that is in direct violation of the Code of Ethics. Nurses have a duty to remain consistent with both their personal and professional values and to accept compromise only to the degree that it remains an integrity-preserving compromise. An integrity-preserving compromise does not jeopardize the dignity or well-being of the nurse or others. Integrity-preserving compromise can be difficult to achieve, but is more likely to be accomplished in situations where there is an open forum for moral discourse and an atmosphere of mutual respect and regard.

Where nurses are placed in situations of compromise that exceed acceptable moral limits or involve violations of the moral standards of the profession, whether in direct patient care or in any other forms of nursing practice, they may express their conscientious objection to participation. Where a particular treatment, intervention, activity, or practice is morally objectionable to the nurse, whether intrinsically so or because it is inappropriate for the specific patient, or where it may jeopardize both patients and nursing practice, the nurse is justified in refusing to participate on moral grounds. Such grounds exclude personal preference, prejudice, convenience, or arbitrariness. Conscientious objection may not insulate the nurse against formal or informal penalty. The nurse who decides not to take part on the grounds of conscientious objection must communicate this decision in appropriate ways. Whenever possible, such a refusal should be made known in advance and in time for alternate arrangements to be made for patient care. The nurse is obliged to provide for the patient’s safety, to avoid patient abandonment, and to withdraw only when assured that alternative sources of nursing care are available to the patient.

 

Where patterns of institutional behavior or professional practice compromise the integrity of all its nurses, nurses should express their concern or conscientious objection collectively to the appropriate body or committee.  In addition, they should express their concern, resist, and seek to bring about a change in those persistent activities or expectations in the practice setting that are morally objectionable to nurses and jeopardize either patient or nurse well-being.

 

Provision 6

The nurse participates in establishing, maintaining, and improving health care environments and conditions of employment conducive to the provision of quality health care and consistent with the values of the profession through individual and collective action.

 

6.1 Influence of the environment on moral virtues and values –

Virtues are habits of character that predispose persons to meet their moral obligations; that is, to do what is right. Excellences are habits of character that predispose a person to do a particular job or task well. Virtues such as wisdom, honesty, and courage are habits or attributes of the morally good person. Excellences such as compassion, patience, and skill are habits of character of the morally good nurse. For the nurse, virtues and excellences are those habits that affirm and promote the values of human dignity, well-being, respect, health, independence, and other values central to nursing. Both virtues and excellences, as aspects of moral character, can be either nurtured by the environment in which the nurse practices or they can be diminished or thwarted. All nurses have a responsibility to create, maintain, and contribute to environments that support the growth of virtues and excellences and enable nurses to fulfill their ethical obligations.

 

6.2 Influence of the environment on ethical obligations –

All nurses, regardless of role, have a responsibility to create, maintain, and contribute to environments of practice that support nurses in fulfilling their ethical obligations. Environments of practice include observable features, such as working conditions, and written policies and procedures setting out expectations for nurses, as well as less tangible characteristics such as informal peer norms.

 

Organizational structures, role descriptions, health and safety initiatives, grievance mechanisms, ethics committees, compensation systems, and disciplinary rocedures all contribute to environments that can either present barriers or foster ethical practice and professional fulfillment. Environments in which employees are provided fair hearing of grievances, are supported in practicing according to standards of care, and are justly treatedallow for the realization of the values of the profession and are consistent with sound nursing practice.

 

6.3 Responsibility for the health care environment –

The nurse is responsible for contributing to a moral environment that encourages respectful interactions with colleagues, support of peers, and identification of issues that need to be addressed. Nurse administrators have a particular responsibility to assure that employees are treated fairly and that nurses are involved in decisions related to their practice and working conditions. Acquiescing and accepting unsafe or inappropriate practices, even if the individual does not participate in the specific practice, is equivalent to condoning unsafe practice. Nurses should not remain employed in facilities that routinely violate patient rights or require nurses to severely and repeatedly compromise standards of practice or personal morality.

 

As with concerns about patient care, nurses should address concerns about the health care environment through appropriate channels. Organizational changes are difficult to accomplish and may require persistent efforts over time. Toward this end, nurses may participate in collective action such as collective bargaining or workplace advocacy, preferably through a professional association such as the state nurses association, in order to address the terms and conditions of employment. Agreements reached through such action must be consistent with the profession’s standards of practice, the state law regulating practice and the Code of Ethics for

 

Nursing. Conditions of employment must contribute to the moral environment, the provision of quality patient care and professional satisfaction for nurses. The professional association also serves as an advocate for the nurse by seeking to secure just compensation and humane working conditions for nurses. To ccomplish this, the professional association may engage in collective bargaining on behalf of nurses. While seeking to assure just economic and general welfare for nurses, collective bargaining, nonetheless, seeks to keep the interests of both nurses and patients in balance.

 

Provision 7

The nurse participates in the advancement of the profession through contributions to practice, education, administration, and knowledge development.

 

7.1 Advancing the profession through active involvement iursing and in health care policy

Nurses should advance their profession by contributing in some way to the leadership, activities, and the viability of their professional organizations. Nurses can also advance the profession by serving in leadership or mentorship roles or on committees within their places of employment. Nurses who are self-employed can advance the profession by serving as role models for professional integrity. Nurses can also advance the profession through participation in civic activities related to health care or through local, state, national, or international initiatives. Nurse educators have a specific responsibility to enhance students’ commitment to professional and civic values. Nurse administrators have a responsibility to foster an employment environment that facilitates nurses’ ethical integrity and professionalism, and nurse researchers are responsible for active contribution to the body of knowledge supporting and advancing nursing practice.

 

7.2 Advancing the profession by developing, maintaining, and implementing professional standards in clinical, administrative, and educational practice –

Standards and guidelines reflect the practice of nursing grounded in ethical commitments and a body of knowledge. Professional standards and guidelines for nurses must be developed by nurses and reflect nursing’s responsibility to society. It is the responsibility of nurses to identify their own scope of practice as permitted by professional practice standards and guidelines, by state and federal laws, by relevant societal values, and by the Code of Ethics.

 

The nurse as administrator or manager must establish, maintain, and promote conditions of employment that enable nurses within that organization or ommunity setting to practice in accord with accepted standards of nursing practice and provide a nursing and health care work environment that meets the standards and guidelines of nursing practice. Professional autonomy and self regulation in the control of conditions of practice are necessary for implementing nursing standards and guidelines and assuring quality care for those whom nursing serves.

The nurse educator is responsible for promoting and maintaining optimum standards of both nursing education and of nursing practice in any settings where planned learning activities occur. Nurse educators must also ensure that only those students who possess the knowledge, skills, and competencies that are essential to nursing graduate from their nursing programs.

 

7.3 Advancing the profession through knowledge development, dissemination, and application to practice

The nursing profession should engage in scholarly inquiry to identify, evaluate, refine, and expand the body of knowledge that forms the foundation of its discipline and practice. In addition, nursing knowledge is derived from the sciences and from the humanities. Ongoing scholarly activities are  essential to fulfilling a profession’s obligations to society. All nurses working alone or in collaboration with others can participate in the advancement of the profession through the development, evaluation, dissemination, and application of knowledge in practice. However, an organizational climate and infrastructure conducive to scholarly inquiry must be valued and implemented for this to occur.

 

Provision 8

The nurse collaborates with other health professionals and the public in promoting community, national, and international efforts to meet health needs.

 

8.1 Health needs and concerns –

The nursing profession is committed to promoting the health, welfare, and safety of all people. The nurse has a responsibility to be aware not only of specific health needs of individual patients but also of broader health concerns such as world hunger, environmental pollution, lack of access to health care, violation of human rights, and inequitable distribution of nursing and health care resources. The availability and accessibility of high quality health services to all people require both interdisciplinary planning and collaborative partnerships among health professionals and others at the community, national, and international levels.

 

8.2 Responsibilities to the public –

Nurses, individually and collectively, have a responsibility to be knowledgeable about the health status of the community and existing threats to health and safety. Through support of and participation in community organizations and groups, the nurse assists in efforts to educate the public, facilitates informed choice, identifies conditions and circumstances that contribute to illness, injury and disease, fosters healthy life styles, and participatesin institutional and legislative efforts to promote health and meet national health objectives. In addition, the nurse supports nitiatives to address barriers to health, such as poverty, homelessness, unsafe living conditions, abuse and violence, and lack of access to health services.

The nurse also recognizes that health care is provided to culturally diverse populations in this country and in all parts of the world. In providing care, the nurse should avoid imposition of the nurse’s own cultural values upon others. The nurse should affirm human dignity and show respect for the values and practices associated with different cultures and use approaches to care that reflect awareness and sensitivity.

 

Provision 9

The profession of nursing, as represented by associations and their members, is responsible for articulating nursing values, for maintaining the integrity of the profession and its practice, and for shaping social policy.

 

9.1 Assertion of values –

It is the responsibility of a professional association to communicate and affirm the values of the profession to its members. It is essential that the professional organization encourages discourse that supports critical self-reflection and evaluation within the profession. The organization also communicates to

the public the values that nursing considers central to social change that will enhance health.

 

9.2 The profession carries out its collective responsibility through professional

Associations

 The nursing profession continues to develop ways to clarify nursing’s accountability to society.

The contract between the profession and society is made explicit through such mechanisms as

(a) The Code of Ethics for Nurses

 (b) the standards of nursing practice

 (c) the ongoing development of nursing knowledge derived from nursing theory, scholarship, and research in order to guide nursing actions

(d) educational requirements for practice

(e) certification, and

(f) mechanisms for evaluating the effectiveness of professional nursing actions.

 

9.3 Intraprofessional integrity

A professional association is responsible for expressing the values and ethics of the profession and also for encouraging the professional organization and its members to function in accord with those values and ethics. Thus, one of its fundamental responsibilities is to promote awareness of and adherence to the Code of Ethics and to critique the activities and ends of the professional association itself. Values and ethics influence the power structures of the association in guiding, correcting, and directing its activities. Legitimate concerns for the self-interest of the association and the profession are balanced by a commitment to the social goods that are sought. Through critical self-reflection and self-evaluation, associations must foster change within themselves, seeking to move the professional community toward its stated ideals.

 

9.4 Social reform –

Nurses can work individually as citizens or collectively through political action to bring about social change. It is the responsibility of a professional nursing association to speak for nurses collectively in shaping and reshaping health care within our nation, specifically in areas of health care policy and legislation that affect accessibility, quality, and the cost of health care. Here, the professional association maintains vigilance and takes action to influence legislators, reimbursement agencies, nursing organizations, and other health professions. In these activities, health is understood as being broader than delivery and reimbursement systems, but extending to health-related sociocultural issues such as violation of human rights, homelessness, hunger, violence, and the stigma of illness.

 

For many seriously ill patients, hospice and palliative care offers a more dignified and comfortable alternative to spending your final months in the impersonal environment of a hospital. Palliative medicine helps patients manage pain while hospice provides special care to improve quality of life for both the patient and their family. Seeking hospice and palliative care isn’t about giving up hope or hastening death, but rather a way to get the most appropriate care in the last phase of life.

WHAT IS HOSPICE AND PALLIATIVE CARE?

Although death is a natural part of life, the thought of dying understandably still frightens many people. You may imagine pain and loneliness, spending your final days in the cold, sterile environment of a hospital far from family, friends and all that you know and love. However, hospice care represents a compassionate approach to end-of-life care, enhancing the quality of remaining life and enabling you to live as fully and as comfortably as possible.

Hospice is traditionally an option for people whose life expectancy is six months or less, and involves palliative care (pain and symptom relief) rather than ongoing curative measures, enabling you to live your last days to the fullest, with purpose, dignity, grace, and support. While some hospitals, nursing homes, and other health care facilities provide hospice care onsite, in most cases hospice is provided in the patient’s own home. This enables you to spend your final days in a familiar, comfortable environment, surrounded by your loved ones who can focus more fully on you with the support of hospice staff.

 

The term “palliative care” refers to any care that alleviates symptoms, even if there is hope of a cure by other means. It is an approach that focuses on the relief of pain, symptoms, and emotional stress brought on by serious illness. Your disease doesn’t have to be terminal for you to qualify for palliative care and, in the U.S., many palliative treatments are covered by Medicare. In some cases, palliative treatments may be used to alleviate the side effects of curative treatment, such as relieving the nausea associated with chemotherapy, which may help you tolerate more aggressive or longer-term treatment.

For many in Western society, death remains a taboo subject. Consequently, many patients and their families remain reluctant to even discuss the possibility of hospice care or palliative care. While most people would prefer to die in their own homes, the norm is still for terminally ill patients to die in hospital, receiving treatment that is either unwanted or ineffective. Their loved ones usually have only limited access and often miss sharing their last moments of life.

 

Some families who do choose hospice care often do so only for the last few days of life, and later regret not having more time saying goodbye to their loved one. To ensure that your family understands your wishes, it’s important for anyone with a life-limiting illness to learn all they can about hospice and palliative care and discuss their feelings with loved ones before a medical crisis strikes. When your loved ones are clear about your preferences for treatment, they’re free to devote their energy to care and compassion.

 

HOW HOSPICE AND PALLIATIVE CARE WORKS

Hospice care focuses on all aspects of a patient’s life and well-being: physical, social, emotional, and spiritual. There is no age restriction; anyone in the late stages of life is eligible for hospice services. While specific hospice services around the world differ in the amenities they provide, most include a hospice interdisciplinary team, or IDT, that includes the patient’s physician, a hospice doctor, a case manager, registered nurses and licensed practical nurses, a counselor, a dietician, therapist, pharmacologist, social workers, a minister, and various trained volunteers.

The hospice team develops a care plan tailored to a patient’s individual need for pain management and symptom relief, and provides all the necessary palliative drugs and therapies, medical supplies, and equipment. Typically, hospice care is provided at home and a family member acts as the primary caregiver, supervised by professional medical staff. Hospice IDT members make regular visits to assess the patient and provide additional care and services, such as speech and physical therapy, therapeutic massage, or dietary assistance. Certified home health aides may also be deployed for help with bathing and other personal care services. Hospice staff remains on-call 24 hours a day, seven days a week.

A hospice IDT also provides emotional and spiritual support according to the needs, wishes, and beliefs of the patient. Emotional and spiritual support is also provided to the person’s loved ones as well, including grief counseling.

THE BENEFITS OF HOSPICE AND PALLIATIVE CARE

Hospice care providers offer specialized knowledge and support at the end of life just as obstetricians and midwives lend support and expertise at the start of life. Hospice can reduce anxiety in both the terminally ill patient and his or her family by helping them make the most of the time remaining and achieve some level of acceptance.

When terminally ill patients, who are often already in a weakened physical and mental state, make the decision to receive hospice and palliative care instead of continued curative treatment, they avoid the dangers of over-treatment. In-home care from a hospice IDT often means the patient receives greater monitoring than he or she would in a hospital. In addition to focusing on the physical health and comfort of a patient, hospice care also focuses on the emotional needs and spiritual well-being of the terminally ill and their loved ones.

Since a hospice program offers substantial support and training for family caregivers, it also helps many patients feel less of a burden to their loved ones.

Misconceptions about Hospice and Palliative Care
Misconception	Reality
Hospice makes death come sooner.	Hospice neither hastens nor postpones dying. The aim is to improve the quality of remaining life so patients can enjoy time with family and friends and experience a natural, pain-free death. In some cases, hospice care can extend life.
Hospice is giving up hope; it’s better to fight for life.	Most terminally ill patients experience less anxiety by refocusing hope on what might be realistically achieved in the time remaining. If continuing uncomfortable and painful curative treatment for an illness is fruitless, hospice patients benefit more from having their symptoms treated instead.
A hospice patient who shows signs of recovery can’t return to regular medical treatment.	If a patient’s condition improves, they can be discharged from hospice and return to curative treatment, or resume their daily lives. If need be, they can later return to hospice care.
A hospice patient can’t change his or her mind and return to curative treatment even if their prognosis hasn’t changed.	A patient can go on and off hospice care as needed—or if they change their mind and decide to return to curative treatment. They may also enter hospital for certain types of treatment if it involves improving their quality of life.
Hospice care is limited to a maximum of six months.	In the U.S., many insurance companies, as well as the Medicare Hospice Benefit, require that a terminally ill patient has a prognosis of six months or less to start hospice, but a terminally-ill patient can receive hospice care for as long as necessary.

A GUIDE TO HOSPICE CARE SERVICES

Hospice care services are typically structured according to the needs and wishes of each patient and his or her family. These may change over time and during the three different stages of care:

·         The last phases of an illness

·         The dying process

·         The bereavement period

Depending on the patient’s circumstances and stage of care, a hospice interdisciplinary team (IDT) may provide any combination of the following services:

·         Nursing Care. Registered nurses monitor your symptoms and medication, and help educate both you and your family about what’s happening. The nurse is also the link between you, your family, and the physician.

·         Social Services. A social worker counsels and advises you and family members, and acts as your community advocate, making sure you have access to the resources you need.

·         Physician Services. Your doctor approves the plan of care and works with the hospice team. In a full hospice program, a hospice medical director is available to the attending physician, patient, and hospice care team as a consultant and resource.

·         Spiritual Support and Counseling. Clergy and other spiritual counselors are available to visit you and provide spiritual support at home. Spiritual care is a personal process, and may include helping you explore what death means to you, resolving “unfinished business,” saying goodbye to loved ones, and performing a specific religious ceremony or ritual.

·         Home Health Aides and Homemaker Services. Home health aides provide personal care such as bathing, shaving, and nail care. Homemakers may be available for light housekeeping and meal preparation.

·         Trained Volunteer Support. Caring volunteers have long been the backbone of hospice. They’re available to listen, offer you and your family compassionate support, and assist with everyday tasks such as shopping, babysitting, and carpooling.

·         Physical, Occupational, and Speech Therapies. These hospice specialists can help you develop new ways to perform tasks that may have become difficult due to illness, such as walking, dressing, or feeding yourself.

·         Respite Care. Respite care gives your family a break from the intensity of caregiving. Your brief inpatient stay in a hospice facility provides a “breather” for caregivers.

·         Inpatient Care. By the same token, even if you are being cared for at home, there may be times when you’ll need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. Sometimes medical intervention will be recommended to ease the dying process (for example, an IV drip with pain medication), requiring round-the-clock nursing care. Thus, a facility may be a better choice. Your hospice team will arrange for inpatient care, and remain involved in your treatment and with your family.

·         Bereavement Support. Bereavement is the time of mourning we all experience following a loss. The hospice care team will work with surviving family members to help them through the grieving process. Support may include a trained volunteer or counselor visiting your family at specific periods during the first year, as well as phone calls, letters, and support groups. The hospice will refer survivors to medical or other professional care if necessary.

WHEN IS IT TIME FOR HOSPICE AND PALLIATIVE CARE?

It’s not time for hospice care and palliative instead of curative treatment if you are currently benefiting from treatments intended to cure your illness. For some terminally ill patients, though, there comes a point when treatment is no longer working. Continued attempts at treatment may even be harmful, or in some cases treatment might provide another few weeks or months of life, but will make you feel too ill to enjoy that time. While hope for a full recovery may be gone, there is still hope for as much quality time as possible to spend with loved ones, as well as hope for a dignified, pain-free death.

There isn’t a single specific point in an illness when a person should ask about hospice and palliative care; it very much depends on the individual. The following are signs that you may want to explore options with hospice care:

·         You’ve made multiple trips to the emergency room, your condition has been stabilized, but your illness continues to progress significantly, affecting your quality of life.

·         You’ve been admitted to the hospital several times within the last year with the same or worsening symptoms.

·         You wish to remain at home, rather than spend time in the hospital.

·         You have decided to stop receiving treatments for your disease.

WHO IS ELIGIBLE FOR HOSPICE CARE?

If your doctor has certified your prognosis as not longer than six months, you are eligible for hospice. This applies to anyone of any age, with any type of illness. As well as cancer patients, people with ALS, kidney disease, and Alzheimer’s disease, for example, can also benefit greatly from hospice care. Alzheimer’s disease, in particular, is often overlooked for hospice referral because of its slow progression. People with Alzheimer’s are usually referred to hospice when they are in the final stages of the illness, which can be very helpful to family members even if the person cao longer communicate.

You can receive hospice care in a nursing home if the nursing home agrees to allow the hospice staff to provide the primary care. Hospice pays for all of the medications and equipment needed in the nursing home. If you’re in a Board and Care facility, the B&C must obtain a waiver from licensing to have someone from hospice at the facility.

HOW TO CHOOSE A HOSPICE CARE SERVICE

Finding a hospice care service

·         Ask your doctor what hospice programs are available in your community.

·         Contact your hospital’s social worker, discharge planner, or a care manager, any of whom should be able to recommend local hospice providers and facilities.

·         Consult with friends who have used hospice services in the past for their loved ones.

·         Visit the international searchable databases in the Resources section below.

TIPS FOR SELECTING HOSPICE CARE PROVIDERS

People are sometimes reluctant to question doctors or other medical professionals about their care. Yet what is more important than the quality of care you will receive during this final phase of life? When you and your family are choosing your hospice team, be sure to ask about:

·         The hospice’s patient-to-caregiver ratios for each hospice discipline.

·         Average frequency of home hospice visits.

·         Response time and procedures followed for after-hours questions and concerns.

·         Continuity of care (i.e., having the same care providers over time).

Also, ask whether the hospice will develop a written treatment plan that is given to all service providers for smooth coordination of care. You and your family members should receive copies of the care plan as well, listing specific duties, work days and hours, and the contact information for the hospice care supervisor.

QUESTIONS TO ASK A HOSPICE CARE SERVICE

Some other questions to ask when considering a hospice care program:

·         Is the program accredited by a nationally recognized accrediting body, such as the Joint Commission on Accreditation of Healthcare Organizations? This means that the organization has voluntarily sought accreditation and is committed to providing quality care.

·         Is this hospice program Medicare certified? Medicare certified programs have met federal minimum requirements for patient care and management.

·         If applicable, is the program licensed by the state? Are caregivers licensed and bonded?

·         Can the program provide references from professionals, such as a hospital or community social workers? Talk with these people about their experiences.

·         How flexible is this hospice in applying its policies to each patient or negotiating over differences? If the hospice imposes conditions that do not feel comfortable, that may be a sign that it’s not a good fit.

·         Is a care plan carefully developed for each patient and their family? Does a nurse, social worker or therapist conduct a preliminary evaluation of the types of services needed in the patient’s home?

·         How much responsibility is expected of the family caregiver? What help can the hospice offer with filling in around job schedules, travel plans, or other responsibilities?

·         What are the program’s policies regarding inpatient care? Where is such care provided?

·         Is there a 24-hour telephone number you can call with questions? Try it to see how the hospice responds to your first call.

PAYING FOR HOSPICE AND PALLIATIVE CARE

Hospice care generally costs less than inpatient care in a hospital, nursing home, or other facility. This is because with home hospice, you pay only for the specific care that you need. In addition, volunteers may be able to provide many services at little or no cost, such as telephone support, friendly visits, meal preparation, and running errands.

In the U.S., Medicare, Medicaid, and most private insurance plans cover hospice services. Medicare regulations require that your hospice care be provided at home, with only short stays in an inpatient facility.

In order to qualify for the Medicare hospice benefit:

·         Your physician must re-certify you at the beginning of each benefit period (two periods of 90 days each, one of 30 days, and an indefinite fourth period).

·         You must sign an elective statement indicating that you understand the nature of your illness or condition, and of hospice care. By signing the statement, you surrender your right to other Medicare benefits related to your illness. (A family member may sign the election statement for you if you are unable to do so.)

While patients usually pay out-of-pocket for any services not covered by insurance (known as a co-payment), hospice services are generally provided without charge if you have limited or nonexistent financial resources. If you are unable to pay, most hospices will provide for you using funds raised from community donations and charitable foundations.

 Death is defined as:

1.     “cessation of heart- lung function, or of whole brain function, or of higher brain function.

2.     “either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem” – (The President’s Commission for the study of Ethical problems in Medicine and Biomedical and Behavioral Research, US, 1983).

Physical signs of dying.

Dying is a different experience for everyone involved.

3.     Confusion – about time, place, and identity of loved ones; visions of people and places that are not present

4.     A decreased need for food and drink, as well as loss of appetite

5.     Drowsiness – an increased need for sleep and unresponsiveness

6.     Withdrawal and decreased socialization

7.     Loss of bowel or bladder control – caused by relaxing muscles in the pelvic area

8.     Skin becomes cool to the touch

9.     Rattling or gurgling sounds while breathing or breathing that is irregular and shallow, decreased number of breaths per minute, or breathing that switches between rapid and slow

10.                       Involuntary movements (called myoclonus), changes in heart rate, and loss of reflexes in the legs and arms also mean that the end of life is near

Changes in body after death:

1.     Rigor Mortis: body becomes stiff within 4 hours after death as a result of decreased ATP production. ATP keeps muscles soft and supple.

2.     Algor Mortis: Temperature decreases by a few degrees each hour. The skin loses its elasticity and will tear easily.

3.     Livor Mortis: Dependant parts of body become discolored. The patient will likely be lying on their back, their backside being the ‘dependant’ body part. The discoloration is a result of blood pooling, as the hemoglobin breaks down.

 

Losing someone or something you love or care deeply about is very painful. You may experience all kinds of difficult emotions and it may feel like the pain and sadness you’re experiencing will never let up. These are normal reactions to a significant loss. But while there is no right or wrong way to grieve, there are healthy ways to cope with the pain that, in time, can renew you and permit you to move on.

Feeling grief is natural, and there is no set time for how long each of us will need to grieve. How we go through the process is as individual as we are. Our life experiences, beliefs and support systems all contribute to how we grieve. Feeling chronically overwhelmed and unable to function for an extended time period because of a loss – whether due to the death of a spouse, a divorce, or change in housing – is cause enough to seek professional help.

Stages of Grief

Grief and loss may begin long before death, as our lives unfold differently than we had planned. The following are stages associated with how we might grieve throughout the caregiving process. An individual may go through each stage or may stay at one stage for a long time. There is no particular order and may depend on the care recipient’s health; but going through the stages is a normal process.

·         Shock

·         Emotional release

·         Depression, loneliness and a sense of isolation

·         Physical symptoms of distress

·         Panic

·         Guilt

·         Anger

·         Inability to participate iormal activities

·         Regaining of hope

·         Acceptance

Each stage of the caregiving experience includes losses and grief. All of these feelings are normal, and may include feelings of joy and intimacy you never expected to experience. The more people you meet, who share your experiences, the more you will find they share many of your feelings as well.

Shock

When someone you love is diagnosed with a chronic illness or terminal illness you might first deny the reality, that the test results must be for someone else. Even though there was a reason why the tests were done to begin with, you are stunned with the truth. Not only is the one you love facing the shock, fear and wonder of what will happen, but, as a caregiver you too face the shock, the fear and worry of what your future will be like. Everything in your life is suddenly turned upside down; any plans you have made may need to be put on hold. You go from planning to how you will live in your retirement years to how you will live each day.

Emotional Release

When someone you know receives a diagnosis for a chronic or terminal illness, many thoughts may go through your mind. Once those what ifs are played over and over in your sub-conscious, the reality of how scared you are and how your life is quickly changing in an unplanned way takes over. The worry of how you will handle it all is overwhelming. While you try to be brave you may cry at any moment – in the car driving from home to work, from the hospital to school, in the grocery store line, at work in your office and at home. People meaning well, ask many questions; you are never able to forget how frightened you are. You and your care recipient are on center stage with everyone wanting to know every facet about what is happening to you. It is a difficult time.

Depression, Loneliness and Isolation

After the initial shock of the news you have learned, you start to plan how to proceed. If it is an illness, a treatment plan begins. Treatment is usually not easy for either the caregiver or the care recipient. There are many doctor visits, rescheduling of activities, the missing of significant events, and the loss of personal time. There is the pressure to stay strong and trying to be encouraging to your partner, family member or friend.

Others don’t know what to say, so they avoid saying anything. Everyone else’s routine goes on uninterrupted. You have no routine; you can plaothing. You live your life based on everyone else’s availability and schedules. It is easy to feel sorry for yourself at this time; it is easy to convince yourself that things will only get worse. It takes great effort to continue to do the meaningful things that are key to your life and those of your care recipient’s.

Physical symptoms of distress

We each cope with the stresses in our lives differently. Many of us have had opportunities throughout our lives to take major changes in stride. Others have had limited dealings with trauma and may not know what to do. Stress may cause you to become dysfunctional. Physical stress can materialize in many ways-the inability to sleep, decreased desire in eating, sadness or depression, the inability to function iormal activities, difficulty in working or focusing, or an increase in crying spells at any time.

Panic

As you continue to try and plan out your life, you ponder many endings to your story. It is easy to think that things will not work out. In many cases, this may be the first time you question what will you do if your partner, family member or friend dies. You may often ask yourself ‘How will I survive?’ The imagined endings to the changes you are experiencing may not be happy ones; they may present very desperate changes that you really don’t want to think about. As a result, panic sets in – you continually worry about what will happen to your care recipient and how you will handle each stage of their disease process.

You also think about yourself. If you are caring for your partner, who will take care of you? Who will reassure you that everything will be all right? But will everything be all right? How will your children handle this situation? Will you be able to handle the financial responsibilities? Will you need to move from where you are living? You feel that on the outside you must be very calm and very brave; but on the inside you feel very scared and very alone with these worries.

Guilt

It is easy to blame yourself for what has happened. With illnesses, could diet or exercise have made a difference? Should you have insisted on going to the doctor sooner? Should you have gone to a different doctor? Should you have tried a different treatment? Should you have been more patient? Could you have done more?

Any thought you have of yourself feels selfish. You wish that you had some time to spend on yourself, and this makes you feel guilty. The guilt plays over and over in your mind. It is hard to see a partner, a family member and a friend in a situation that will not improve as is the case with chronic and terminal illnesses. Humaature does not accept loss easily; it makes us feel guilty and helpless when we cannot reverse the life continuum.

Anger

When bad things happen to you, a common reaction is to be angry. You feel angry at life in general, angry because your life has changed. If you are caring for your partner, you now have all of the responsibilities that the two of you used to share. You have no leisure time, you are working harder, and you are feeling very tired. You feel pressure to get everything done at work and at home. You have no fun any more; you feel like you are doing everything poorly. You are feeling financial pressures with the increase in medical expenditures. You are frustrated that your tasks keep increasing. You are having to give up so much. And, you are angry because you are losing your partner or your loved one.

Loss of Normalcy

As your care recipient becomes more and more dependent on you, your life and activities, as you previously knew them, fade away. Your care recipient becomes your life. Every waking moment of your day revolves around the care and needs of your loved one. Doctor visits and home healthcare visits become the focus of your life. You listen to every word and hope that something will change. For individuals who cherish their privacy, it is very difficult to be the center of attention. You may want to be unrecognized so that you can grieve without feeling like everyone is watching how you are handling it all.

Regaining Hope

As a caregiver, small things can bring great happiness:

·         a night that your care recipient slept without waking in discomfort;

·         doctor visits when you were seen at your appointment time;

·         doctor visits where your care recipient’s condition had remained the same or had not deteriorated;

·         the care recipient is able to speak after a period of silence;

·         finding that others share your feelings;

·         a visit from a friend who focused only on you.

Miraculously, you start taking each day at a time.

Acceptance

The realization that you can be a caregiver is very powerful. You know you will do the very best job in caring for your loved one and though there will be many unfamiliar problems, you will find solutions. You know you are trying your hardest. This may be one of the most difficult jobs that you will ever have; it also may be one of the most satisfying.

Living and Grieving

As you move through each day, you know that you must focus on your future. Although the past may be comfortable and at times comforting, you know that you must redirect your energies to the present and future. Grieving is a process that has no time limit. Each of us will grieve differently; some will start living fully with little prompting, some may work through this process slowly, while others may need professional help. Many of us have no others to be concerned about, while some of us may have family members – young or old who are dependent on what we do for them and what we say. Many look to us as their role model and will mimic how we are grieving.

The death of a loved one is often a transforming experience. In many cases it is an event which will prompt an introspective life review. It may redirect your understanding to what is truly important in your life. This internal review involves risk and the shedding of many layers of emotional comfort that have accumulated in your lifetime. It may require you to:

·         take steps to learn something new,

·         meet people outside of those you already know,

·         get a job or to find a new one,

·         continue your normal routine or

·         allow you the freedom to listen to your passions and go after dreams.

When we challenge ourselves, we allow ourselves to grow and become stronger. Your steps may be small at first – you are beginning a new phase in your life. As with anything in life, you will have successes and failures. Be proud of yourself for each effort you are making. Your self-discovery and moving forward is important in the grieving process.

Finding Support

Many individuals find comfort in support groups. Individuals that join support groups usually have something in common. The individuals can provide help and guidance to others in the group who may be going through a difficult period of coping with their loss. Support groups are also excellent sources for learning about new programs and services in the community. You may find that there are others in the group that may be having a more difficult time coping with their loss than you are. Many Bereavement and Grief support groups can be identified by a Social Worker, a Geriatric Care Manager, Physician, Parish Nurse, Nurse, Hospice program and Chaplain offices. Hospitals are a good source to call and ask for information about Bereavement and Grief support groups. There are also many on-line groups such as Griefnet and Growthhouse.

Others may rely on their families and friends to be their sounding board. What is important is that when you need help in any way, that you get it. It is okay to talk about how you feel. In fact, it is critical to express the different emotions that you are feeling. Let supportive friends and family help you at this time.

For many, their faith often helps them work through their emotions; it may give them the support and courage to make it through each day. Faith communities may bring to you the unconditional love and attention to help you through not only the emotional issues that you are facing, but also through the day-to-day responsibilities that you may have difficulty facing.

Some individuals go through the bereavement process without help from anyone. For some, privacy is soothing. For others being able to go about your routine without feeling like everyone is watching every move you are making is important. Getting quickly back to your routine also can be very comforting. You will find out what works for you.