End of Life AND Death:The Nursing Approach

Tallinn, 12/2012

Maria Tsironi,MDAssoc. ProfessorDept of Nursing

University of PeloponneseSPARTA, GREECE

Nightingale’s Model for Nursing Practice

Values, Morals, & Ethics• Values: are freely chosen, enduring beliefs or

attitudes about the worth of a person, object, idea, or action (e.g. freedom, family, honesty, hard work)

• Values frequently derive from a person’s cultural, ethnic, and religious background; from societal traditions; and from the values held by peer group and family

• Values form a basic for Behaviour “purposive Behaviour”; The purposive behavior is based on a person’s decisions/choices, and these decisions/choices are based on the person’s underlying values.

• Values are learned and are greatly influenced by a person’s sociocultural environment (e.g. demonstrate honesty, folk healer, observation and experience)

• People need societal values to feel accepted, and they need personal values to produce a sense of individuality.

• Professional values often reflect and expand on personal values

• Once a person becomes aware of his/her values, they become an internal control for behavior, thus, a person’s real values are manifested in consistent pattern of behavior

• Nurses acquire these values during socialization into nursing – from codes of ethics, nursing experiences, teachers, and peers.

• Watson (1981) outlined 4 important values of nursing:– Strong commitment to service– Belief in the dignity and worth of

each person– Commitment to education– Autonomy

• Nurses need to understand their own values related to moral matters and to use ethical reasoning to determine and explain their moral positions.

• Moral principles are also important, otherwise, they may give emotional responses which often are not helpful.

• Although nurses can not and should not ignore or deny their own and the profession’s values, they need to be able to accept a client’s values and beliefs rather than assume their own are the “right ones”

This acceptance and nonjudgmental approach requires nurses to be aware of their own values and how they influence behavior

• Values about life, health, illness, death.

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Morals and Ethics• Morals: is similar to ethics and many

people use the two wards interchangeably (closely associated with the concept of ethics)

• Derived from the Latin “mores”, means custom or habit.

• Morality: usually refers to an individual’s personal standards of what is right and wrong in conduct, character, and attitude.

• Morals: are based on religious beliefs and social influence and group norms

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Morals and Ethics• Ethics is a branch of philosophy (the study

of beliefs and assumptions) referred to as moral philosophy.

Derived from the Greek word “ethos” which means customs, habitual usage, conduct and character.

• Ethics: usually refers to the practices, beliefs, and standards of behavior of a particular group such as nurses. It also refers to the method of inquiry that assists people to understood the morality of human behavior (study of morality)

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Morals and Ethics• In both, we describe the behavior we

observe as good, right, desirable, honorable, fitting or proper or we might describe the behavior as bad, wrong, improper, irresponsible, or evil.

• There are times when a differences in values and decisions can be accepted

• Differences in values and decisions put people into direct conflict.

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Morals and Ethics (resolving conflicts)

• Be constructive (rather than destructive) in the methods you choose to work toward resolving the differences– Listen carefully without interruptions– Seek clarification using gentle questioning– Respect cultural differences– Be attentive to body language– Explain the context of your point of view and

try to picture the other person’s expective of what you are saying

Comparison of morals and ethics

Morals

• Principles and rules of right conduct

• Private, and personal

• Commitment to principles and values is usually defended in daily life

• Pertain to an individual‘s character

Ethics• Formal responding process

used to determine right conduct

• Professionally and publicly stated

• Inquiry or study of principles and values

• Process of questioning, and perhaps changing, one’s morals

• Speaks to relationships between human beings

Moral distress

• When the nurses are unable to follow their moral beliefs because of institutional or other restriction.

• The distress occurs when the nurse violates a personal moral value and fails to fulfill perceived responsibility.

• Moral distress represent practical, rather than ethical dilemmas.

Basic ethical concepts

1. Rights

2. Autonomy

3. Beneficence and Nonmaleficence

4. Justice

5. Fidelity

6. Veracity

7. The standard of best interest

Basic ethical concepts Rights

• Rights form the basis of most professional codes and legal judgments

– Self-determination rights

– Rights and cultural relativism

– Rights of the unborn

– Rights of privacy and confidentiality

Basic ethical concepts Autonomy

• Involves the right of self-determination, independence, and freedom.

• It refers to the right to make one’s own decisions

• Respect for autonomy means that nurses recognize the individual’s uniqueness, the right to be what that person is, and the right to choose personal goals

• Nurses who follow the principle of autonomy respect a client's right to make decisions even when those choices seem not to be in the client’s best interest

Basic ethical concepts Autonomy

• Respect for people also means treating others with consideration

• In the clinical setting, this principle is violated when a nurse disregards client's subjective accounts of their symptoms (e.g. pain)

• Patients should give informed consent before tests and procedures are carried out

Basic ethical concepts Beneficence and Nonmaleficence

Beneficence: means “doing good”• Nurses should implement actions that benefit

clients and their support persons. However, in an increasing technologic health care system, doing good can also pose a risk of doing harm (e.g. intensive exercise program).

Nonmaleficence: means the duty to do no harm.• This is the basic of most codes of nursing ethics.• Harm can mean deliberate harm, risk of harm, and

unintentional harm.• In nursing, intentional harm is always

unacceptable.• The risk of harm is not always clear• A client may be at risk of harm during a nursing

intervention that is intended to be helpful (e.g. medication)

Basic ethical concepts Justice

• Is often referred to as fairness

• Nurses frequently face decisions in which a sense of justice should prevail (succeed)

• E.g. busy unit, new admission

Basic ethical concepts Fidelity

• Means to be faithful to agreements and responsibilities one has undertaken

• Nurses have responsibilities to clients, employers, government, society, the profession, and themselves

• Circumstances often affect which responsibilities take precedence at a particular time

Basic ethical concepts Verasity

• Refers to telling the truth

• As a nurse should I tell the truth when it is known that doing so will cause harm?

• Does tell a lie when it is known that the lie will relieve anxiety and fear?

• Should I lie to dying people?

Basic ethical concepts The standard of best interest

• Applied when a decision must be made about a patient’s health care and the patient is unable to make an informed decision

Nursing Codes of Ethics

• Nurses have four fundamental responsibilities: to promote health, to prevent illness, to restore health, and alleviate suffering.

– Nurses and people– Nurses and practice– Nurses and the profession– Nurses and the co-workers

DEATH

• Mosby’s medical, Nursing & Allied Health Dictionary

“ Death is: The cessation of life as indicated by the absence of activity in the brain and central nervous system, the cardiovascular system, and the respiratory system as observed and declared by a physician”.

• BUT the style in which a person dies is very individual, just as their life was.

• The stages of dying, much like the stages of grief, may overlap, and the duration of any stage may range from as little as a few hours to as long as months. The process vary from person to person.

• Some people may be in one stage for such a short time that it seems as if they skipped that stage. Some times the person returns to a previous stage. According to Kubler- Ross, the five stages of dying are:– Denial– Anger– Bargaining– Depression– Acceptance

1. Denial

• On being told that one is dying, there is an initial reaction of shock.

• The patient may appear dazed at first and may then refuse to believe the diagnosis or deny that anything is wrong.

• Some patients never pass beyond this stage and may go from doctor to doctor until they find one who supports their position.

2. Anger

• Patients become frustrated, irritable and angry that they are sick.

• A common response is,” Why me? ”

• They may become angry at God, their fate, a friend, or a family member.

• The anger may be displaced onto the hospital staff or the doctors who are blamed for the illness.

3. Bargaining

• The patient may attempt to negotiate with physicians, friends or even God, that in return for a cure, the person will fulfill one or many promises, such as giving to charity or reaffirm an earlier faith in God.

4. Depression

• The patient shows clinical signs of depression- withdrawal, psychomotor retardation, sleep disturbances, hopelessness and possibly suicidal ideation.

• The depression may be a reaction to the effects of the illness on his or her life or it may be in anticipation of the approaching death.

5. Acceptance

• The patient realizes that death is inevitable and accepts the universality of the experience.

• Under ideal circumstances, the patient is courageous and is able to talk about his or her death as he or she faces the unknown.

• People with strong religious beliefs and those who are convinced of a life after death can find comfort in these beliefs (Zisook & Downs, 1989).

MANAGING DEATH ANXIETY

Spirituality

Religion is a prime source of strength and sustenance to many people when they are dealing with death. Different religious theories explain the inevitability and even necessity of death from different perspectives,i.e.

• In The Bible death has been viewed as “Blessed are the dead who die in the Lord from now on…….that they may rest from their labors, and their works follow them (Revelations, ch. 14, verse 13)”.

• Islamic belief says- death as the begining of eternal life. Every individual will be questioned about his deeds in this life and he will be awarded Heaven or Hell based on His judgement.

• According to the Gita, soul is not destructible but immortal. It says that death of the body is certain and irrelevant but eternal Self or the universal Self is immortal, therefore there should be no grief over what is inevitable, even necessary.

Existential Approaches in Management of Death Anxiety

• Death anxiety is inversely proportional to life satisfaction (Yalom, 1980).

• When an individual is living authentically, anxiety and fear of death decrease (Richard, 2000).

• Recognition of death plays a significant role in psychotherapy, for it can be the factor that helps us transform a stale mode of living into a more authentic one (Yalom, 1980). Confronting this realization produces anxiety.

• Frankl (1969) also contends that people can face pain, guilt, despair and death in their confrontation, challenge their despair and thus triumph. It also postulates that a distinctly human characteristic is the struggle for a sense of significance and purpose in life.

Existential therapy provides the conceptual framework for helping the client challenge the meaning in his or her life

Management of dying patientThe 7 C (Cassen,1991)

• Concern: Empathy, compassion, and involvement are essential. • Competence: Skill and knowledge can be as reassuring as warmth

and concern. • Communication: Allow patients to speak their minds and get to

know them. • Children: If children want to visit the dying, it is generally advisable;

they bring consolation to dying patients. • Cohesion: Family cohesion reassures both the patient and family. • Cheerfulness: A gentle, appropriate sense of humor can be

palliative; a somber or anxious demeanor should be avoided. • Consistency: Continuing, persistent attention is highly valued by

patients who often fear that they are a burden and will be abandoned; consistent physician involvement mitigates these fears.

Symptom Management

• Assessment of the severity of the symptoms. • Evaluation for the underlying cause. • Addressing the social, emotional and spiritual

aspects of the symptom. • Discussing the treatment options with the patient

and family. • Using therapies designed as around the clock

interventions for chronic symptoms. • Reevaluating the control of the symptom

periodically. (Dial, 1999)

PAIN

The major focus of most dying patients is the avoidance of pain. Controlling pain in terminally ill patients requires attention to the following:

• Potential etiology of pain

• Use of medications

• Use of nonpharmacologic methods

Deal with….

• EuthanasiaGreek words meaning “easy death”.

Euthanasia is an act by which the causative agent of death is administered by another with the intent to end life.

Killing an innocent person, even at his or her request is not ethical.

“Code for Nurses (1985) and the ANA position statement (1994) states that the nurse should not participate in euthanasia but be vigilant advocates for the delivery of dignified and human care.

Deal with….

• Living WillsPrepared while patient has decisional capacity

Describes patient preferences in the event they become incapable of making decisions or communicating decisions.

Usually describes what type of life prolonging procedures the patient would or would not want and circumstances under which they would want these procedures carried out, withheld, or withdrawn

The Nursing Approach

• Nurses are very committed to life and health.• The dying patient is a contradiction to a nurse's

commitment. Occasionally people in the medical field react to the dying person as if they represent a failure in their care, or their skills.

Although there is really nothing a human being can do to stop the destiny/ process of another human being.

We can helpWe can help the dying patient and their the dying patient and their families in their final hours with our families in their final hours with our

education and compassion. education and compassion.

Death & Ethical Considerations

• Death is often fraught with ethical dilemmas.

• Many health care agencies have ethics committees to develop and implement policies to deal with end-of-life issues.

• Important distinctions must be made between pain relief and euthanasia.

The Nursing Approach

The person who deals with the dying patient must commit (Schwartz and Karasu, 1997) to:

• Deal with mental anguish and fear of death• Try to respond appropriately to patient’s needs

by listening carefully to the complaints and • Be fully prepared to accept their own counter

transferences, as doubts, guilt and damage to their narcissism are encountered.

The Nursing Approach

• Developing a sense of control and efficacy. • Encouraging peer groups for families coping with

bereavement.• Developing increased resourcefulness in dealing

with death related situations.• Recognizing that a moderate level of death

anxiety is acceptable.• Improving our understanding of pain and

suffering will also improve communication and effective interactions.

The Nursing Approach

• Many nurses are not well prepared to deal with death and dying

• Nonmalignant or chronic conditions, (such as cardio-respiratory disease) are usually treated with acute care focus

• Nurses are frustrated by giving futile treatments• Lack of a palliative care plan may mean patient

is less likely to have a “good death”• Palliative care vs. hospice care is not well

understood

Definition of Palliative Care:

• An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual

---World Health Organization (2004)

• Affirm life and regard dying as a normal process• Neither hasten nor postpone death• Provide relief from pain and other distressing

symptoms• Integrate psychological and spiritual aspects of care• Offer a support system to help patients live as actively

as possible up to death• Use a team approach to address the needs of patients

and their families• Offer a support system to help the family cope during

the illness and their own bereavement

WHO Definition (Continued):

Hospice

• A type of care for the terminally ill, founded on the concept of allowing individuals to die with dignity, surrounded by those who love them.

• Clients enter hospice care when aggressive medical treatment is no longer an option or when client refuses further medical intervention.

Why is Palliative Care Important to Nurses?

• Death and dying are too rarely discussed– Communication among patients, their families, and

health care providers is often lacking

• There is a need for better end-of-life care

-Nurses have the most intimate and continuous contact with patients and families during that phase of life

Palliative VS. Hospice Care(ANA-ELNEC)

• No hospitalization• Focus on comfort vs.

cure• No invasive

procedures

• Hospice org’s. provide medical,nursing,nurse assistants,chaplain,

social worker

24 hr support pt & family

Bereavement services

Nursing Interventions

• Encourage discussion of “end- of-life “

• Decisions re: type of care

• Advance directives

• Euthanasia - Active vs. passive.

Assessment of the Dying Client

• Client and family goals and expectations.• Client’s awareness of terminal nature of

the illness.• Availability of support systems.• Current stage of dying.• History of previous positive coping skills.• Client perception of unfinished business

to be completed.

Physiological Needs of the Dying Client

• Respirations.• Fluids and nutrition.• Mouth, eyes, and nose.• Mobility.• Skin care.• Elimination.• Comfort.• Physical environment.

Signs of Impending Death

• Lungs become unable to provide adequate gas diffusion.

• Heart and blood vessels become unable to maintain adequate tissue perfusion.

• The brain ceases to regulate vital centers.• Cheyne-Stokes respirations (irregular breathing) and

“death rattle” (noisy respirations caused by secretions accumulating in larynx and trachea) signal imminence of death.

Legal Aspects Following Death

• Autopsy (examination of the body after death by pathologist to ascertain cause of death).

• Organ Donation.

Challenges

• Nurses may be confused and frustrated about what the DNR order means– How far do you go with invasive treatments?

• Patients must be given realistic expectations of prognosis and treatment outcomes – What are the patient’s current desires and

wishes/advance directives?• Acute care and critical care areas may not be

conducive to palliative care/comfort care

Implications for nursing care

• Assessment

“tell me about recent events in your life”

Look for concurrent stressors

“what spiritual beliefs do you hold in relation to death?”

End of Life Discussions:

• Break bad news sensitively• Provide information as the patient wishes• Permit expression of emotion• Clarify concerns and problems• Involve patient and family in making

decisions about treatment• Set realistic goals• Provide appropriate medical, psychological,

and social care, and promote continuity of care

Nursing Students Need To Know:

• Pain and symptom management

• Grief, loss and bereavement issues

• Communication skills• Cultural considerations• Ethical and legal issues• Quality end-of-life care

• Standards of practice for sound clinical judgment in pain management

• Acute, chronic, and end-of-life pain issues

• Assurance that nurses are supported for providing appropriate pain management

LOSS AND GRIEF

Loss

• Any situation —actual, potential, or perceived —wherein a valued object or person is changed or is no longer accessible to the individual.

Types of Loss

• Actual (loss of someone or some thing).

• Perceived (felt by an individual but not tangible to others, e.g. loss of self-esteem).

• Physical (loss of part or aspect of the body).

• Psychological (emotional loss, e.g. a woman’s feelings after menopause).

Categories of Loss

• Loss of External Object.

• Loss of Familiar Environment.

• Loss of Aspect of Self (Physiological or Psychological).

• Loss of Significant Other.

Grief

“Grief is the individual’s response to a loss and mourning is an active and evolving process that includes those behaviors used to incorporate the loss experience into one’s life after the loss.”

Grief

• A series of intense physical and psychological responses that occur following a loss.

• A normal, necessary, and adaptive response to a loss.

Mourning & Bereavement

• Mourning is the period of time during which grief is expressed and resolution and integration of loss occur.

• Bereavement is the period of grief following the death of a loved one.

Theories of the Grieving Process

• Erich Lindemann• George L. Engle• John Bowlby• William Worden

Leading theoretical models describinggrieving have been devised by:

Lindemann Theory

• Somatic distress.• Preoccupation with the image of the

deceased.• Guilt.• Hostile reactions.• Loss of patterns of conduct.

Erich Lindemann coined the phrase grief work and described typical grief reactions:

Engle Theory

• Three Stages of Mourning– Stage I: Shock and Disbelief (disorientation,

helplessness, denial).– Stage II: Developing Awareness (guilt, sadness,

isolation, anger and hostility).– Stage III: Restitution and Resolution (bodily

symptoms, idealization of the deceased, beginning of coming to terms with loss, establishment of new social patterns and relationships).

Bowlby Theory

• Four Stages of Mourning– Numbness.– Yearning and searching.– Disorganization and despair.– Reorganization.

Worden Theory

Four Tasks to Deal with Loss Successfully– Accept the fact that the loss is real.– Experience the emotional pain of grief.– Adjust to an environment without the deceased.– Reinvest the emotional energy once directed at the

deceased into another relationship.

Types of Grief

• Uncomplicated (a grief reaction that normally follows a significant loss).

• Dysfunctional (intense grief that does not result in reconciliation of feelings).

• Anticipatory (occurrence of grief work before loss actually occurs).

• Disenfranchised (grief that is not openly acknowledged, socially sanctioned, or publicly shared, e.g. grief over the loss of a pet).

Types of Grief• Anticipatory grief ->premature detachment =

sociological death; premature withdrawal of a person =psychological death

• Acute grief - a crisis. - person feels physically sick & is emotionally distressed - preoccupied with the loss->functional disruption - intense for first 3 months

• Chronic grief - may temporarily inhibit activities; intermittent pain of grief -exacerbated on anniversary dates.

• Pathological chronic grief - c/b excessive & irrational anger, insomnia, major depression

Factors Affecting Loss and Grief

• Developmental Stage.• Religious and cultural beliefs.• Relationship with the lost object.• Cause of death.

Nursing Care of the Grieving Client

Five-part model:• Assessment.• Nursing Diagnosis.• Planning/Outcome Identification.• Implementation.• Evaluation.

Loss, Grief & End of Life Care

• Worden’s Model 2003- “grieving process series of evolving tasks”

• Acceptance stage -person accepts of reality of loss

• Working stage - person works through physical & emotional pain

• Adjustment stage - person adjusts to a change in environment

• Relocation of loss - person is able to emotionally move on with life

Loss , Grief & End of life

• Jett’s Loss Response Model - incorporates a systems approach

• Loss-> stage of disequilibrium• Search for meaning of loss• Story of loss is told repeatedly(this helps in the grieving process)• Adaptation & accommodation of new roles

Implications for nursing care• Goal- to attain healthy adjustment to the loss ;

to reestablish equilibrium• Interventions - Gently establish rapportOffer reasonable hope /emotional supportOffer support for functional disruptionProvide information about the disease that may

help person to process the loss.Allow/encourage grievers to inform others Facilitate elder to reorganize their lifeGuide & encourage the reframing of memories

Needs of the Dying & their Families

• The “6 C’s Approach to caring for the dying & their families -

• Care - best possible care• Control - active participant in own care• Composure -within the realm of one’s culture• Communication- 4 types of communication

identified (Closed awareness,suspected awareness,mutual pretense;open awareness

• Continuity - establish legacies• Closure - corresponds with reconciliation &

transcendence

Care of the Family

• Informing the family as to the circumstances of the death.

• Providing information about viewing the body.

• Offering to contact support people.• Sometimes assisting in decision making

regarding a funeral home and removal of the dead person’s belongings.

Nurse’s Self-Care

• Dealing with dying clients is stressful. Nurses must face their grief.

• Unresolved grief is called shadow grief. Nurses often carry shadow grief which, if not released, can cause illness and burnout.

Signs of Shadow Grief

• Loss of energy, spark, joy, and meaning in life.

• A feeling of being powerless to make a difference.

• Increased smoking or drinking.

• Unusual forgetfulness.• Constant criticism

directed at others.

• Constant inability to get work done.

• Uncontrolled outbursts of anger.

• Perception of clients and their families as objects.

• Surrender of hobbies or interests.

Coping with Shadow Grief

• Take time to cry with and for clients.

• Get physical: run, walk, bicycle, play tennis.

• Ask colleagues to help with tasks; avoid being “Supernurse.”

• Connect to place of worship; pray.

• Look for joy in work. Laughter is a great healer.

• Create a caring circle of friends.

• Listen to music.

"Every suffering has meaning"

Man's search for meaning- V.E Frankl

You are invited for your ERASMUS Program in

The Dept. of Nursing, University of Pelponnese Sparta,Greece(http://sparti.uop.gr/~nosil)

and always remember

Carpe diemCarpe diem

meaning ENJOY EVERY DAY