1. End of Life AND Death: The Nursing Approach Tallinn, 12/2012
Maria Tsironi,MD
Assoc. Professor
Dept of Nursing
University of Peloponnese
SPARTA, GREECE

3. Nightingale’s Model for Nursing Practice

4. 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.

5. 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

6. Watson (1981) outlined 4 important values of nursing:
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

7. 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”

8. 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.

9. 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

10. 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)

11. 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.

12. 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

13. Comparison of morals and 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
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

14. 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.

15. Basic ethical concepts
Rights
Autonomy
Beneficence and Nonmaleficence
Justice
Fidelity
Veracity
The standard of best interest

16. 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

17. 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

18. 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

19. 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)

20. 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

21. 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

22. 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?

23. 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

24. 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

25. 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.

26. 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

27. 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.

28. 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.

29. 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.

30. 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.

31. 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).

32. MANAGING DEATH ANXIETY

33. 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.

34. 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

35. Management of dying patient The 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.

36. 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)

37. 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

38. Deal with…. Euthanasia Greek 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.

39. Deal with…. Living Wills
Prepared 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

40. 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 help the dying patient and their families in their final hours with our education and compassion.

41. 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.

42. 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.

43. 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.

44. 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

45. 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)

46. WHO Definition (Continued):
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

47. 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.

48. 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

49. 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

50. Nursing Interventions
Encourage discussion of “end- of-life “
Decisions re: type of care
Advance directives
Euthanasia - Active vs. passive.

51. 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.

52. Physiological Needs of the Dying Client
Respirations.
Fluids and nutrition.
Mouth, eyes, and nose.
Mobility.
Skin care.
Elimination.
Comfort.
Physical environment.

53. 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.

54. Legal Aspects Following Death
Autopsy (examination of the body after death by pathologist to ascertain cause of death).
Organ Donation.

55. 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

56. 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?”

57. 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

58. 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

59. LOSS AND GRIEF

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

61. 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).

62. Categories of Loss Loss of External Object.
Loss of Familiar Environment.
Loss of Aspect of Self (Physiological or Psychological).
Loss of Significant Other.

63. 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.”

64. Grief
A series of intense physical and psychological responses that occur following a loss.
A normal, necessary, and adaptive response to a loss.

65. 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.

66. Theories of the Grieving Process
Leading theoretical models describing
grieving have been devised by:
Erich Lindemann
George L. Engle
John Bowlby
William Worden

67. Lindemann Theory Erich Lindemann coined the phrase grief
work and described typical grief reactions:
Somatic distress.
Preoccupation with the image of the deceased.
Guilt.
Hostile reactions.
Loss of patterns of conduct.

68. 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).

69. Bowlby Theory Four Stages of Mourning Numbness.
Yearning and searching.
Disorganization and despair.
Reorganization.

70. 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.

71. 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).

72. 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

73. Factors Affecting Loss and Grief
Developmental Stage.
Religious and cultural beliefs.
Relationship with the lost object.
Cause of death.

74. Nursing Care of the Grieving Client
Five-part model:
Assessment.
Nursing Diagnosis.
Planning/Outcome Identification.
Implementation.
Evaluation.

75. Loss, Grief & End of Life Care
Worden’s Model “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

76. 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

77. Implications for nursing care
Goal- to attain healthy adjustment to the loss ; to reestablish equilibrium
Interventions -
Gently establish rapport
Offer reasonable hope /emotional support
Offer support for functional disruption
Provide information about the disease that may help person to process the loss.
Allow/encourage grievers to inform others
Facilitate elder to reorganize their life
Guide & encourage the reframing of memories

78. 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

79. 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.

80. 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.

81. 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.

82. 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.

83. "Every suffering has meaning"
Man's search for meaning- V.E Frankl

84. and always remember Carpe diem
You are invited for your ERASMUS Program in
The Dept. of Nursing, University of Pelponnese Sparta,Greece (
and always remember Carpe diem
meaning ENJOY EVERY DAY