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Death and Dying and Addressing Spiritual Needs of the Dying

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Title: Death and Dying and Addressing Spiritual Needs of the Dying


1
Death and Dying and Addressing Spiritual Needs of
the Dying
  • Emily K. Schulz, PhD, OTR/L, CFLE
  • OT 665
  • Spring 2004

2
Purpose
  • 1. To explore issues of death and dying in elders
  • 2. To learn about OTs role in treating those
    with terminal illness in palliative care.
  • 3. To learn some ways to address the spiritual
    needs of the dying.

3
A Show of Hands
  • How many people here have lost
  • A family member?
  • A Friend?
  • A pet?
  • It is these types of experiences that help us
    have empathy for people who are dying and their
    families.

4
30 minute learning activity
  • 1. Take out a piece of paper and a pen or pencil
  • 2. Watch the clip ( 20 minutes) from Ted
    Koppels interview with Morrie Schwartz.
  • 3. Write down 3 things that
  • struck you as important about the dying process,
  • touched you,
  • You think you can use in therapy with your own
    clients.
  • Be prepared to discuss with the larger group.

5
Responses to Activity
6
Death and Dying
  • And OTs Role in Palliative Care

7
Treatment of Non-Terminal vs. Terminal Clients
  • Non-Terminal
  • Helping clients to lead
  • long,
  • balanced,
  • independent lives.
  • Terminal
  • Helping clients to
  • live in the moment,
  • have quality of life,
  • live out last of days engaged in activities they
    enjoy doing.

8
How We Die
  • 7 processes account for 85 of deaths
  • Atherosclerosis
  • hypertension
  • adult-onset diabetes
  • obesity
  • Alzheimers other dementias
  • cancer
  • decreased resistance to infection

9
Understanding Terminal Illness
  • Terminal Illness takes many forms cancers
    respiratory, cardiac, liver diseases and
    acquired immune deficiencies.
  • May be prolonged illness or rapidly progressing
    illness.
  • Clients conditions will progressively worsen
    over time.
  • Terminal illness prognosis is usually given 3-12
    months before death.

10
Understanding Terminal Illness
  • Therapists need to focus on daily life needs of
    clients, not just on the diagnosis.
  • Understand how the illness influences clients
    daily lives, and abilities to engage in desired
    roles and activities, and quality of life.
  • Terminally ill clients live life more intensely.
  • Therapists need to support the continued life of
    client while addressing the support and closure
    needs that clients have.

11
Individuals experiences with terminal illness
  • Depending upon the diagnosis
  • Physical symptoms may include
  • energy loss,
  • muscle weakness,
  • pain,
  • nausea,
  • sensory loss,
  • loss of appetite.

12
Individuals experiences with terminal illness
  • Metastases from breast cancer may cause
  • compression of the spine and
  • neurological problems (paraparesis, for example).
  • orthopedic problems after mastectomy, such as
  • decreased ROM and
  • pain in upper extremities
  • Radiotherapy after mastectomy may cause
  • lymphedema in the upper extremity.

13
Individuals experiences with terminal illness
  • Terminal Brain tumor depending upon the
    location of the tumor - may cause
  • Cognitive loss
  • Behavior difficulties
  • Sensory loss
  • Motor loss

14
Individuals experiences with terminal illness
  • Lung Cancer or Heart Failure may cause
  • Shortness of breath
  • Restriction in activities of daily living.

15
Terminal Clients
  • Experience similar losses of other (non-terminal)
    clients.
  • However, they also can expect to experience
  • a progressive deterioration of health and
  • ultimately death.

16
Older Terminal Clients
  • Elders also experience similar losses of other
    (non-terminal) clients.
  • And also can expect to experience
  • a progressive deterioration of health and
  • ultimately death.
  • On top of these issues, they often have multiple
    health difficulties such as
  • coronary heart disease, diabetes, and arthritis
  • which may or may not be related to their terminal
    illness.
  • All of these factors together impact the older
    terminal clients ability to engage in meaningful
    activities of daily living.

17
The End of Life Psychological Issues
  • Elizabeth Kubler-Ross the 5 stages of death and
    dying
  • Initial denial, anger, bargaining, depression,
    acceptance.
  • Not a linear process more possible reactions to
    the terminal illness prognosis.
  • In many ways, we have moved beyond Kubler-Ross in
    our understanding of the death and dying process.
  • But she provided us with a good foundation to
    address these issues.

18
The End of Life Psychological Issues
  • How one copes with dying mirrors how one copes
    with issues over a life time.
  • Common emotions include fear and uncertainty.
  • Fear
  • of unknown,
  • of potential pain,
  • of loss of functioning (cognitive and physical),
  • Of side effects of treatment,
  • Of other peoples reactions,
  • Of isolation and separation from others.
  • Uncertainty
  • About reason for terminal disease,
  • how to function long short term,
  • whether or not disease is fatal,
  • About possibility of living/dying with dignity
  • if loved ones will cope well after death.

19
Terminal Illness and the Older Person
  • Impending death can be an expected occurrence,
    developmentally speaking, as the person has lived
    a long life.
  • Older person may have already experienced many
    losses in life
  • Health,
  • mobility,
  • productivity,
  • independence,
  • family,
  • friends.
  • However, (despite the natural timing,
    developmentally) the terminal prognosis may still
    be a shock and elder may still grieve the
    impending loss of life.

20
Terminal Illness and the Older Person
  • Social Factors
  • Elders may experience reduced social networks
    (loss of family, friends)
  • May not have anyone to advocate for them with
    health care team
  • If they do have a social network, many may be
    elders themselves with their own set of health
    issues.
  • Those with extended family may fare better,
    however the younger generation is usually busy
  • working and
  • raising families of their own
  • (sandwich generation).

21
Terminal Illness and the Older Person
  • Medical Factors
  • Non-terminal Elders often have multiple health
    difficulties such as
  • cardiovascular issues (angina, high blood
    pressure),
  • diabetes,
  • dementia,
  • arthritis,
  • sensory loss (eyesight, hearing).
  • Elders with terminal illness may be viewed
    differently than younger people with terminal
    illness.
  • May not receive optimum care because may be
    perceived that they would die soon anyway.

22
2 Attitudes Toward Death
  • In general, our culture is death-denying.
  • Its not that Im afraid to die, I just dont
    want to be there when it happens. Woody
    Allen
  • A paradox The care of the dying has been handed
    over to the medical profession to hospitals,
    but, many physicians deny death more than the
    average individual.

23
Denial of Death
  • Medical technology has prolonged the process of
    dying.
  • For doctors (and nurses therapists), a process
    of depersonalization can occur while working with
    dying patients.
  • The patient becomes a complicated challenge, a
    riddle to be solved, a battle to be won.

24
Acceptance of Death
  • Death is a part of life and is integral to
    existence.
  • Many individuals, have difficulty accepting death
    in this way.

25
A Good Death
  • Relates to the process or style of dying
    leading up to and including the moment of death
    itself.
  • It is the social life of the person who is fully
    aware of his/her terminal status.
  • Involves a series of social events between person
    who is dying and significant people in his/her
    life family, friends clergy, health
    professionals, etc.
  • Reflects the persons background and is
    appropriate for his/her context.

26
A Good Death
  • Kellehear five features of a good death
  • 1. An awareness of dying by the individual and
    others
  • 2. social adjustments and personal preparations
    for the death (talking and spending time with
    loved ones, delegating responsibilities of
    personal affairs to another person)
  • 3. Public preparations (financial, funeral,
    religious)
  • 4. Work change (relinquishing work role if not
    retired)
  • 5. Making farewells formally and informally.

27
Good Deaths?
  • Death can often be undignified.
  • Dying patients often lose self-control, and
    become irritable, demanding, and selfish.
  • Dying patients often become totally dependent for
    self-care, non-ambulatory, incontinent.
  • The last months of life may be the most difficult
    for patient and family.
  • A patient may not be ready to know or want to
    know that he/she is dying.

28
Palliative Care
  • An established medical specialty
  • Meets the needs of clients with incurable
    illnesses
  • Emphasizes
  • symptom control,
  • quality of life,
  • helping people live life to the fullest,
  • helping people prepare for death.

29
Palliative Care and Hospice Philosophy
  • Hospice Philosophy of Palliative Care
  • Minimizing pain
  • Controlling symptoms
  • Meeting physical, psychological, emotional,
    spiritual needs of dying people and their
    families.
  • Recognizing that a cure is not possible, but the
    quality of the journey can be influenced in a
    positive way.

30
OTs and the Terminal Client
  • Dying patients will challenge you emotionally to
    the utmost.
  • But there is great personal and professional
    satisfaction to be found by skilled, sensitive
    therapists working with dying patients and their
    families.

31
Fundamental Skills Knowledge Needed as an OT to
work with the Dying
  • Familiarity comfort with issues of serious
    illness, loss, and death.
  • Familiarity comfort in the presence of the
    expression of strong emotions.
  • Ability to work as a team-member.
  • Values, beliefs, attitudes that support the
    philosophy ethics of palliative care.

32
Skills Knowledge, continued
  • Knowledge about the psychological, social, and
    emotional issues which confront seriously ill
    persons their families.
  • Skills in physical care of patient.
  • Degree of openness and self-reflection.
  • Interpersonal communication skills with
    colleagues, patients, and families.

33
The dying patient may test you
  • To see how fearful or anxious you are about
    death.
  • If you are too quick to reassure or comfort
    them, they may not wish to burden you with their
    true feelings.
  • Instead, you may wish to show them that you can
    talk openly without being overwhelmed.

34
Palliative Care and Occupational Therapy
  • Role of OT in palliative care depends upon the
    stage of the illness.
  • Early stage
  • Gently work towards small improvements in
    performance and maintenance of functional
    performance.
  • Midstages
  • Compensatory strategies for function and safety.
  • Maintenance of quality of life.
  • Working closely with clients and families with
    modified techniques and equipment.
  • End stage
  • Provide palliative care and supportive care of
    client.
  • Client is supported and assisted in engagement in
    activities as desired.
  • Work with family and health care team to ensure
    quality of life.

35
Palliative Care and Occupational Therapy
Affirming Life and Preparing for Death
  • Affirming Life and Preparing for Death

Affirming Life
Preparing For Death
  • Living everyday life as normally as possible to
    fulfill desired goals.
  • Facilitating client control of daily life, the
    care they receive, and the environment in which
    they live.
  • Assisting clients to have the necessary
    supportive and safe care from family, significant
    others and professional caregivers.
  • Facilitating clients to gain closure in aspects
    of life by achieving desired goals.

BALANCING THE FOCUS OF CARE ACCORDING TO CLIENT
GOALS
CLIENT-CENTERED PRACTICE UNDERPINS THE PROCESS
EVENTUAL DECLINING HEALTH LOSS OF FUNCTIONAL
ABILITY
36
What is Our Payoff for Working with the
terminally Ill?
  • Nothing in life is more important than the fact
    of death, and nothing more urgent than learning
    to face its inevitability. Eknath Easwaran
  • Perhaps, life is fullest, and death is easiest,
    for those who have faced it head-on, reflected on
    it, and integrated the concept into their lives.

37
Spiritual Care
  • Addressing Spiritual Needs at the End of Life

38
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • A main spiritual need at the end of life for
    elders is to have hope.
  • Hope is goal-directed and allows a person to
    live well in the present and move towards the
    future with trust.
  • As young people, hopeful goals have propelled us
    forward in life (graduation from college,
    marriage, first full time job, raising children,
    etc).

39
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • The challenge for elders is to find hope in
    limited circumstances.
  • The choice for elders is
  • Living with hope amidst illness and limitation
    or
  • retreating from life in despair
  • (integrity vs. despair Erikson)

40
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • Appropriate hopes for elders
  • Connectedness with others
  • Gaining courage from not being alone
  • Receiving loving caregiving from others

41
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • Connectedness
  • (remember my definition of spirituality?)
  • With others family, friends, caregivers
  • With the divine and/or religious beliefs

42
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • Five ways elders can have hope for the future
  • 1. Biological immortality live on genetically
    through offspring and descendents
  • 2. Social immortality live on through creative
    works and contributions to others lives
  • 3. Continuity of the natural process individual
    may pass but the process of living in which one
    has participated continues
  • 4. Dying as ecstasy and being absorbed into
    transcendent reality
  • 5. Personal experience is restored in life after
    death (Judeo-Christian perspective).

43
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • Some people also may hope for the courage to face
    whatever is coming in the future.
  • Others may find hope in the support of loved ones
    during terminal illness.
  • Hope does not change external circumstances but
    provides a way for the person to reframe what is
    happening in a positive way.
  • Any and/or a combination of these ways can
    provide hope for elders depending upon what makes
    sense to and provides meaning for him/her.

44
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • Regarding life after death-
  • Person may be
  • embracing religious view of life after death -
    or
  • May be questioning it.
  • Either way, best approach is active listening,
    and referral to a clergy member or a chaplain.

45
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • Some hopes can be counterproductive.
  • Unrealistic expectations
  • Distraction from what is really happening.
  • May be more difficult for the person to cope when
    the reality of terminal illness can no longer be
    denied is coupled with a more serious decline in
    health.

46
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • How to provide hope
  • Active listening to the person.
  • Never assume you know what the person means the
    first time he/she brings up a topic.
  • Instead ask, can you tell me more about that?
  • Follow the persons lead.
  • Find out, if possible, what is meaningful to
    him/her in terms of hope.
  • Help him/her to reframe hopes as needed, and only
    when person is ready to discuss it.
  • (You will know that through using active
    listening).
  • For example from hope for a cure, to hope for
    supportive caregiving.
  • Refer to a clergy member/chaplain.

47
Spiritual Care Addressing Spiritual Needs at
the End of Life
  • Ultimately, when you are addressing the spiritual
    needs of those who are dying you help them
  • to experience that they belong, that they are
    connected to other people who love them, to the
    whole world in which they live, to God (Doka,
    2002, p.98).

48
Three Dimensional Spirituality Model
The Mystery that is Spirituality
Experiencing a meaningful Connection to a Higher
Power, Values and/or Beliefs as Expressed
through our reflections, narratives and actions.
The Past
The Adaptation Gestalt
Experiencing a disconnection from the Core self,
Others and/ or the World as Expressed through our
reflections, narratives and actions.
Experiencing a meaningful connection to the Core
Self, Others and/or the World as Expressed
through our reflections, narratives and actions.
The
Person
The Future
The Present
Experiencing a Disconnection from a Higher Power,
Values, and/or Beliefs as Expressed through our
reflections, narratives and actions.
49
Spiritual Care Addressing Spiritual Needs at
the End of Life
The Mystery that is Spirituality
Experiencing a meaningful Connection to a Higher
Power, Values and/or Beliefs as Expressed
through our reflections, narratives and actions.
  • Persons struggling with their ultimate decline
    are helped to experience that they belong, that
    they are connected to other people who love
    them, to the whole world in which they live, to
    God (Doka, 2002, p.98).

The Past
The Adaptation Gestalt
Experiencing a disconnection from the Core self,
Others and/ or the World as Expressed through our
reflections, narratives and actions.
Experiencing a meaningful connection to the Core
Self, Others and/or the World as Expressed
through our reflections, narratives and actions.
The
Person
The Future
The Present
Experiencing a Disconnection from a Higher Power,
Values, and/or Beliefs as Expressed through our
reflections, narratives and actions.
50
Points to remember
  • People have a right to decide how much
    information they want to hear acknowledge.
  • Hope is essential for emotional survival of some
    patients.
  • Most people face death with ambivalence.
  • We must accept patients as they are, in terms of
    their ability to face reality.

51
Points, continued
  • Psychosocial intervention can be done if paced to
    the patients reality.
  • When working with dying patients, we need to
    remember that it is their death, not ours, and we
    must not impose our own needs on their experience.

52
Just Walk with Me
  • What I'd really like is if you would just walk
    with me.
  • Listen as I begin in some blundering, clumsy
    way to break through my fearfulness of being
    exposed as weak.
  • Hold my hand and pull me gently as I falter
    and begin to draw back.
  • Say a word, make a motion or a sound that
    says, "I'm with you."
  • From The Support Team Network, www.SupportTeam.org

53
Questions and Answers
  • ?
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