PRESENTER DR. BIKRAMADITYA JAISWAL. 1ST YEAR RESIDENT, IOP. CHAIR PERSON DR. NEELANJANA PAUL.

L. ASSISTANT PROFESSOR, IOP.

An overview of the seminar

y Introduction. y Concept of death. y Concept of Good death. y Emotional stages during dying. y Near death experiences and their implications. y Mourning pattern and belief regarding death. y How to Break the bad news. y Hospice and palliative care. y Management of dying person. y Euthanasia. y Grief and bereavement.

INTRODUCTION
y Birth and death are two aspects of life, which will

happen to everyone. y Dying and death are painful and personal experiences for those who are dying and their loved ones caring for them. y Death affects each person involved in multiple ways, including physically, financially , emotionally, psychologically and spiritually. y Psychological/ behavioural effects may vary depending on whether the death is sudden and unexpected, or ongoing and expected,

Concept of DEATH
y Death is defined as: 1. "irretrievable cessation of heart- lung function, or of

whole brain function, or of higher brain function. 2. either irretrievable cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem" - (Uniform determination of death act by The President's Commission for the study of Ethical problems in Medicine and Biomedical and Behavioral Research, US, 1983). y In other words, the UDDA states that a person can be declared dead when either the heart and lungs or the brain and brain stem stop functioning permanently.

GOOD DEATH VS BAD DEATH

y Common elements of a good death have been identified as the following :  Adequate pain and symptom management.  Avoiding a prolonged dying process.  Clear communication about decisions by patient, family and physician.  Adequate preparation for death, for both patient and loved ones.  Feeling a sense of control.  Finding a spiritual or emotional sense of completion.  Affirming the patient as a unique and worthy person.  Strengthening relationships with loved ones.  Not being alone

Emotional transitions at lifes end

y Although there are many theories about the emotional

transitions encountered by dying people, the best known is. . . . .

Landmark work entitled On Death and Dying by ELISABETH KUBLER ROSS. Identified five emotional stages experienced by dying individuals.

Five emotional stages

y Denial - or no, not me y Anger - or why me? y Bargaining - or Yes me, but. . . y Depression - or Yes It s me! y Acceptance - or Yes me, and I am ready. It s part of

life. I have to get my life in order. They are vividly known as DABDA

DENIAL
y Usually occurs when the person is first told of the illness . y Health care workers should listen without confirming or denying it. y 1% of the terminally ill patient remain in this stage.

ANGER
y This stage occurs when the patient can no longer deny death. y The patient may blame themselves, their loved ones, health care workers or GOD for their illness.

BARGAINING
y Usually occurs when patient accepts death but wants more time to live. y Patients turn to religion and spiritual beliefs during this period. y Making promises to God to try and obtain more time.

DEPRESSION
 This stage occurs when the patient realizes that death will come soon and they won t be with their families any longer.  The patient shows clinical signs of depression- withdrawal, psychomotor retardation, sleep disturbances, hopelessness and possibly suicidal ideation.

ACCEPTANCE
y The patient realizes that death is inevitable and accepts

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

y The stagesy May not be in order. y May overlap or repeat a stage at times. y Others may not experience all stages. y Duration of any stage may range from as little as a few

hours to as long as months. y The process vary from person to person.

Stages of dying according to Kubler-Ross Advantages and Criticism

y Positive aspects
y Focus on humane treatment of the dying and their

needs y Encourages the caregivers to view the world through the eyes of the dying y Learning from the dying about ourselves, our values and our own search for values

y Negative aspects.
y Lack of empirical support in scientific literature y Restrictive nature of the stages y Problem with the way it was applied by healthcare

professionals annoyance if the dying people do not move neatly through the expected stages

NEAR DEATH EXPERIENCES

y Near-death experience (NDEs)

y Individuals at the edge of permanent death are revived.

y Dr. Raymond Moody (1975) pioneered work on NDE. y Survivors describe death as unpleasant at first, but upon letting

go they report experiences of great joy.

He outlined nine elements that generally occur during NDEs.

y y y y y y y y y

A strange sound: Peace and painlessness: Out-of-body experience: The tunnel experience: Rising rapidly into the heavens: . People of light: The Being of Light: The life review: Reluctance to return:

y Hallucinations caused by hyperactivation of amygdala-

hippocampus-temporal lobe a response of oxygen starved brain, have been proposed as a physiological explanation.

The near-death event as a major life transition

y Impact of NDE on the survivors:
y Reduction in death anxiety y Focus on here and now rather than preoccupation with y y y y y

death Sense of relative invulnerability Strong belief in continued existence Significant shift towards spirituality Changes in values, priorities towards love and caring of others New interests in caring aspects of human relationships

DEATH BELIEFS
y 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. y Gita: soul is not destructible but immortal
y Self instead of dying, merely goes on to take a new body and start the process

all over again, therefore it is pointless to worry about the discarding of the present body (Srimadbhagvadgita, ch. 2, verse 11, 22, 23; Kamath, 1993).

y Bible: 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). y In Islam: death is the beginning 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.

As death approaches

When death is imminent

Immediately after death

Methods of disposal

Funeral customs
Usually within 3-7 days a service may take place in the house prior to going to the cemetery or crematorium. Monks may be invited to remind the mourners of the impermanenc e of life.

Mourning practice
There is great variations according to country of origin, e.g. Sri Lanker Buddhist mourners may return to work in three or four days and place no religious restrictions on widows. Some Vietnamese have a series of rituals; mourning may last 100 days and mourning for a husband or father, three years

Buddhism

Dying person needs peace and quite to allow for meditation. A monk or religious teacher should be invited to talk to the dying person and chant passages of scripture

The ideal is to die in a fully conscious and calm state of mind. If a monk is not available, a fellow Buddhist may chant to encourage a peaceful state of mind.

No special requirements relating to the care of the body. Buddhists from different countries will have their own traditions regarding care of the body. If a monk or religious teacher is not present, inform the monks of the appropriate school.

Buddhists bury or cremate according to local traditions.

As death approaches

When death is imminent

Where appropriate, a priest or minister might be notified. Many Christians will wish to receive Communion (which will include some form of repentance and forgiveness). Prayers of commendatio n may also be said

Immediately after death

No special requirements

Methods of disposal
Either burial or cremation. Increasingly only close family are present at the burial of the body or the ashes

Funeral customs
It is customary in some areas to hold a prayer service in the house of the dead person before the funeral. For Orthodox, Roman Catholics and some Anglicans the funeral involves a church service with a Mass or Communion. Sometimes the body is placed in the church the night before and in Orthodox funerals the casket remains open throughout the service. Protestants services are simpler and the body is usually not visible.

Mourning practice
There is usually no official mourning period or mourning dress. There may be a service of memorial and thanksgiving some months after the funeral.

Christianity

Some Christians may wish for prayers and anointing with oil by a minister or pries

As death approaches

When death is imminent

The Declaration of Faith (Shahada) is said and, if possible the dying person responds I bear witness that there is no God but God and Muhammad is His Messenger

Immediately after death

Non-Muslim health workers should ask permission to touch the body, then use disposable gloves. The body must be kept covered. Soon after death, there is a ritual washing of the body by same-sex Muslims. Post-mortem are disliked

Methods of disposal
Always burial

Funeral customs
Ideally burial is within 24 hours of death. Women are not included at the burial. Male family members carry the coffin either to the mosque or directly to the cemetery where the funeral prayer is said. The body is buried in a deep grave facing Mecca. In bigger cities there are special areas for Muslim burials . In some instances the body is embalmed and taken back to the country of origin for burial

Mourning practice
Islamic law requires friends and relatives to feed mourners for three days. After this the family should officially return to normal though unofficial mourning may continue until the 40 th day. It is ended by Quranic readings and a meal.

Islam

Other Muslims, usually family members, join the dying person in prayer and recite verses from the Qur an. Dying person may wish to have face towards Mecca (south east)

As death approaches

When death is imminent

The family may wish to call a Hindu priest to perform holy rites. A dying Hindu should be given Ganges water and the sacred Tulsi leaf in the mouth by the relatives. A person should die with the name of God being recited. Hindus often wish to die at home.

Immediately after death

The family will usually want to wash the body themselves. If no family is available health workers should wear disposable gloves, close the eyes and straighten the limbs. Jewellery and religious objects should not be removed.

Methods of disposal
Cremation as soon as possible with the exception of children under three who are buried

Funeral customs
Part of the service takes place at home. The pandit (priest) chants from scripture and the chief mourner (usually the eldest son) performs the rituals. Mourners walk around the coffin which is then closed and taken to the crematorium for further prayers.

Mourning practice
Mourners and friends return to the deceased s house. In India the period of mourning and austerity (10-16 days) culminates in rituals enabling the dead person s soul to join the ancestors. In Britain these very important rituals occur soon after the funeral and involve gifts to priests or to charity. There may be further rituals at one, three, and 12 months.

Hinduism

Hindus may receive comfort from hymns and readings from the Hindu holy books. Some may wish to lie on the floor. The family should be present.

How to Break the bad news

y any news that drastically and negatively alters the y y y y y

view of their future. 50 -90% of the patient s want the truth. So the issue is not do you ? Issue is how ? In reality, patient s who are dying, know they are dying. They want confirmation of their status.

y GOAL To do so in a way that facilitates acceptance and

understanding, and reduces the risk of destructive responses.

How to do this?
y Never ASSUME . Always ASK . y Follow six step protocol 1. Arrange physical context. 2. find out what patient knows. 3. find out what patient wants to know. 4. share information. 5. respond to patient s feelings. 6. plan follow-through.

Arrange physical context

Always in person, face to face. Never on telephone Assure privacy. Verify who is present. Verify who should be present. Remove physical barriers. Sit down. Touch patient (appropriately).

Find out what patient knows?

y Not just knows, but understands. y Use open questions. y Listen effectively to response. y Repeat back what patient says. y Do not interrupt. y Make encouraging cues. y Maintain eye contact. y Tolerate silence. y Listen for buried question .

Find out what patient wants to know

y ASK !! y Do not allow families to run interference. y If patient chooses not to know now, may ask later.

Share the information

y Plan agenda. y Start by aligning with what patient knows. y Allow patients to get ready y Impart information in small packets. y Verify message is received.

Respond to feelings
y Acknowledge emotions. y Learn to be comfortable with silence and with

emotion. y Range of normal reaction is wide -give latitude as much as possible. -stay calm, speak softly. -be gentle, yet firm. - stick to basic rules of interview: question-listen-hear-respond.  Respond with empathic responses.

Planning follow-through
y Have plan of action. y Make certain patient s understand what is fixable and

what is not. y Always be honest. y Patient leaves with contract: - what will happen, who to call, how to call, when to return. y We have one chance to get this conversation right Patient/family will remember this always.

Hospice and Palliative care

y What is hospice?
y H - Home yO

Options y S Specialized y P Personable yI Individualized y C Care for E End of life issues/ care.  Dame cicely saunders at St. Christopher s hospice in London first applied the term hospice to specialized care for dying patient s in 1967.

y Hospice is a specialized program that addresses the

needs of the catastrophically ill and their loved ones particularly accepted in US and West. y A team approach is provided in hospice that may involve physicians, nurses, social workers, clergy, home health aids, volunteers, therapists and family caregivers. y Hospice workers can help a dying person manage pain, provide medical services and offer family support through every stage of the process, from diagnosis to bereavement.

 Components of hospice care programme include the following: 1. Client and family as the unit of care. 2. Co-ordinated home care with access to available inpatient and nursing home beds. 3. Control of symptoms(physical, sociological, psychological and spiritual). 4. Physician directed services. 5. Provision of an interdisciplinary care team of physicians, nurses, spiritual advisers, social workers and counsellors. 6. Medical and nursing services available at all times. 7. Bereavement follow up after a client's death. 8. Use of trained volunteers for frequent visitation and respite support. 9. Acceptance into the programme on the basis of health care needs rather than the ability to pay.

Palliative Care
y Latin word "palliate" to "cover" or "mask" hence to relieve pain and symptoms. y Focuses on relieving symptoms that are related to chronic illnesses. y Can be used at any stage of illness stages.

not just the advanced

y Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. y GOAL - Achievement of best possible quality of life. y AIM To help the person have a meaningful life not just to live somehow till death. y

to put life into their days and not just days into their life

Palliative care  Affirms life and regards dying as a natural process.  Neither hastens nor postpones death.  Provide relief from pain and other distressing symptoms.  Is concerned with quality of life.  Aims at total care physical, social , psychological and spiritual.  Is a team approach.  is individual specific.  Shift emphasis from technology to patients. high touch, low tech  Partnership between patient and the team.  Emphasizes an open and sensitive communication.

Difference between palliative and hospice care

Palliative care Stage of illness Can be used at any stagenot just advanced stage Can range from conservative to aggressive/curative. Anytime during the course of a chronic illness. Hospice care The illness has progressed to a point where curative treatment is no longer desired or beneficial Limited and focus on palliation of symptoms. The goal is no longer to cure, but to promote comfort. Terminal condition. 6 months or less of life expectancy.

Treatment Differences:

Treatment Timing:

Palliative care in INDIA

y Pain and palliative care society , calicut . y Pain and palliative care society, Thrissure. y Ruplal Nandy Memorial Cancer Centre, Chandernagore

(RNMCRC), Hoogly.

y Ruma Abedona Hospice, Rishra, West Bengal. y Sambedna, Madhyamgram, Kolkata. y Department of Palliative Care, Cancer Centre Welfare Home and

Research Institute ( CCWHRI), Thakurpukur, Kolkata.

y Department of Radiotherapy, Medical College, Kolkata

Existential Approaches in Management of Death Anxiety

y Death anxiety is inversely proportional to life satisfaction (Yalom, 1980). y When an individual is living authentically, anxiety and fear of death decrease (Richard, 2000). y 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. y 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. y Existential therapy provides the conceptual framework for helping the client challenge the meaning in his or her life.

Management of dying patient

y Cassen (1991) suggests 7 C s. y Concern: Empathy, compassion, and involvement are essential. y Competence: Skill and knowledge can be as reassuring as y y y y y

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

Advance Directives
y Documents written in advance of serious illness that state patient s choices for health care, or name someone to make those choices, if they become unable to make decisions. y Through advance directives, such as living wills and durable powers of attorney for health care, patient s can make legally valid decisions about their future medical treatment. y By executing a power of attorney for health care, patient s are authorizing someone to make health care decisions on their behalf. y A living will is a document in which the patient can stipulate the kind of life-prolonging medical care they want if they become terminally ill, permanently unconscious, or in a vegetative state and . . . y They are unable to make their own decisions.

Euthanasia
y Eu Good and Thanatos death. (Greek word). y A deliberate intervention undertaken with the express intention of ending a life to relieve intractable suffering [House of lords select committee on medical ethics]. y Euthanasia may be classified in the following ways:  According to whether a person gives informed consent.  Voluntary.  Non voluntary.  Involuntary.  According to the procedure used.  Passive euthanasia.  Active euthanasia.

Pros and Cons of Euthanasia

Pro s It provides a way to relieve extreme pain. It provides a way of relief when a person's quality of life is low. Frees up medical funds to help other people. It is another case of freedom of choice. Con s Euthanasia is a form of killing. Most suffering can be relieved with skillful and compassionate care. Many patient s have unresolved psychosocial or spiritual issues or unrecognised or untreated depression. Slippery slope . Threat to the economically and socially vulnerable and the poor, mentally ill or the disabled. Violates the time honoured mission of physicians. Euthanasia can become a means of health care cost containment

Physician assisted suicide

y Death caused by an intentionally lethal dose of medication ordered by a physician and self-administered by a patient.

Is this the Same as Euthanasia?

y No. Active Euthanasia involves the physician administering the lethal substance to the person directly, thereby ending the persons life.

Is Physician Assisted Suicide Legal?

The only four places that today openly and legally, authorize active assistance in dying of patients, are:

y Oregon (since 1997, physician-assisted suicide only); y Switzerland (1941, physician and non-physician assisted suicide only); y Belgium (2002, permits 'euthanasia' but does not define the method; y Netherlands (voluntary euthanasia and physician-assisted suicide lawful since April 2002 but permitted by the courts since l984).

Methods
y Method generally involves a lethal dose of medication. y This could include increasing the morphine a patient receives or a combination of drugs. y Methods of physician assisted suicide are meant to provide a peaceful death so they do not involve violent methods

Dr. Jack Kevorkian

 An Atheist physician from Pontiac, MI known as Dr. Death for assisting in approximately 130 physician assisted suicides since 1990  Served eight years of a 10-25 year prison sentence for assisted suicides  Has not changed his position since his release from prison.

Grief and Bereavement

y Bereavement comes from latin root word to have

been robbed . State of having lost someone to death. y Grief Response to such a loss.( Emotional, cognitive, functional and behavioural). y Mourning - Process of coping with loss and grief.

Variables that influence Grief

y y y y y

Nature of prior attachment/perceived value of loss. Way in which the loss occurred: e.g., shocking, gradual, young. Coping strategies of the bereaved. Age of bereaved. Social support available.

Complicated Grief Reactions

Grief is generally complicated when it is extremely

intense and consuming for more than six months.



What is Complicated Grief?

y High risk factors that lead to maladaptive adjustment,

or . y Normal symptoms with abnormal intensity and duration.

Diagnosing Complicated Grief

y The person cannot speak of the deceased without experiencing intense and fresh grief. y Some relatively minor event triggers off an intense grief reaction. y Themes of loss come up in a clinical interview. y Unwilling to move material possessions belonging to the deceased. y Developed physical symptoms like those the deceased experienced before death. y Radical changes in their lifestyle following a death. y Long history of subclinical depression: persistent guilt and lowered self-esteem, severe hopelessness, self blame.

Diagnosing Complicated Grief

y A compulsion to imitate the dead person. y Self-destructive impulses. y Unaccountable sadness occurring at a certain time each year. y Phobia about illness or about death is often related to the specific illness that took the deceased y Severely out of touch with feelings. y Intense anger. y Social withdrawal. y Loss of interest or planning for future. y Substance abuse.

Bereavement during different age groups

Birth- 2 years
y sensitive to changes in routine and stress in their environment. y child may display excessive crying, writhing, rocking, biting and other anxiety related behaviors.

2-5 yrs
y Feelings of sadness, anxiety, insecurity, irritability and anger y Believe that death is a temporary state that can be reversed. y Equate death with sleeping or being away on a trip. y Act as if nothing happened, while others may exhibit regressive behaviors, such as bedwetting or excessive clinging

Bereavement during different age groups

6-9 yrs
y are able to consider the biology of death and grasp its finality. y may develop fears associated with their own death or the death of a surviving parent y feelings of insecurity may be expressed in reluctance to separate from caregivers y some may be hyperactive, aggressive and disruptive, while others are withdrawn and sad y may have nightmares, difficulty sleeping through the night, or display regressive behaviors

Bereavement during different age groups

9-12 yrs
y understand that death is final and that it happens to everyone y fears and worries associated with the loss may be heightened by

the physical occurring within their own bodies.

y y y y

Teen age group may have a need to feel strong , in control of their emotions and indistinguishable from their friends. may hide their emotions of grief by engaging in risk-taking behaviors. may be reluctant (or unable) to express their feelings with others. may become more easily distracted, experience sleeping and eating disturbances, perform better or worse in school, and display strong emotional mood changes.

Bereavement during different age groups

Adults Death of a spouse is often ranked as the most stressful.  According to some losing a child is more profound.  Parents may experience guilt or blame each other.  May result in marital discords.  Elderly do not face more difficulty in coping than their younger counter parts.  Grief is often less intense and prolonged.

Constructive Suggestions for Bereaved

y Don t blame self. y Don t try to be brave and strong. y Don t try to run away. y Don t feel you owe it to deceased to stay where they lived. y Don t feel sorry for yourself.

Constructive Suggestions for Helpers

Do something specific to help. Respect preferences to be alone. Do not avoid contact with bereaved. Act normally and naturally in referring to the deceased. Allow bereaved to determine when they want to talk about the deceased. y Don t force your beliefs on the grieving. y Don t say I know how you feel.
y y y y y

Grieving Parents Need.

y Permission to feel y Awareness that grief lasts a lifetime y Help with marital differences in grief y Help with remaining children y Concrete help with finances, tasks, etc.

Grieving Children Need:

y Information at their age level. y Preparation. y Inclusion in care giving. y Inclusion in family ritual. y Presence of a trusted adult. y Long term attention.

THANK YOU....