On pain and suffering
Dr Michele Chaban MSW, RSW, PhD.
Director of AMM- MIND
The Inter-professional Applied Mindfulness
Meditation Certificate
University of Toronto.
Copyrite : Michele Chaban MSW, RSW, PhD
Objectives• To survey our perspectives on suffering
( phenomenology).
• To explore our thinking on suffering ( epistemology).
• To explore how values, beliefs and culture influence how we experience suffering.
• To begin to develop a language of suffering.
• To begin to develop a new relationship with suffering itself.
• To explore the use of M,MM in responding to pain and suffering.
What is suffering?
There are as many ways to describe
suffering- as there are people who live
it.
Suffering resides deeply in the world of
I, me and we….it is highly personal.
The Phenomenology of
Suffering
Because suffering lives in the realm of the subjective,it resists evaluation and relies on description, story telling, metaphors,depiction, meaning, silence .
Suffering may be a core human experience.
In health care , we wade through suffering either giving or receiving care?
The Phenomenology of
Suffering• In the west ; illness, dying, disability and
death ( the 3 D‟s) are viewed as being an assault on life, rather than an integral part of life.
• Suffering is also viewed as being counter, against, anti or outside of what life should be, rather than an integral part of life.
The Phenomenology of
Suffering• In the west, we want to avoid, deny, park,
diminish, eradicate suffering.
• We try to eradicate suffering in society through health care interventions, the social determinants of health, pain and symptom control, social policies, social programming.
The Phenomenology of
Suffering
• Yet if the scaffolding to attend to suffering is in place, then why do we still suffer?
Perhaps it is because of how we view suffering….it is an intruder, a squatter.
The Phenomenology of
Suffering
• In the west, our relationship with suffering is to conquer it, rather than embrace it.
• This impulse is deeply embedded in our culture and times.
The Phenomenology of
Suffering
• Lets look at where in the west we have
tried to attend to suffering :
• Pain and symptom management*
• Mental Illness
• Social policy and programming
• Social determinants of health
Pain and Symptom
Management• As health sciences sought curative
treatments, and succeeded in extending life,
they extended the suffering that accompanies
that extended life. ( Callahan).
• Acute illness, if not eradicated, became a
chronic illness with accompanying distress to
be managed. eg cancer, AIDS
Pain and Symptom
Management• In the wake of life extension, Hospice/Palliative/ End
of Life Care clinicians began to advocate for pain and
symptom management strategies that not only
influenced the quality of one‟s life, but the quality of
one‟s death .
• This intent was progressively realized over the last 50
years.
New England Journal of
Medicine,
August 2010
• Quantity and Quality of Life Study.
• Trial of anti-disease chemotherapy drug vs palliative care.
• Those who accessed palliative care lived 3 months longer than those who accessed longevity drug.
• The dying who accessed PC reported a higher quality of life and a greater happiness as they were living out their final days.
• Could it be that attending to suffering rather than to disease alone, made the difference?
How do we begin to make a
study of suffering?
• To make a study of suffering : aspects
may include the nature of suffering, its
processes, its origin and causes, its
meaning and significance, its related
personal, social, and cultural behaviors,
its remedies, management, and uses….
its narratives…..and our relationship
with the suffering!
Champions & Leadership in
attending to suffering
• Dame Cicely Saunders ( international)
• Dr Balfour Mount ( national & international)
• Dr Elizabeth Latimer ( local, national and
international)
Pain & Symptom Management
• Dame Cicely Saunders proposed a theory of “total
pain” which is now referred to as “total suffering”.
• Dame Saunders said that pain has a bio-psycho-
social-spiritual complexity…..i.e. how I respond to my
pain, how I feel my pain, the qualities and attributes I
give to my pain….can increase or decrease my
perception of pain.
The Whole Person view of
Total Pain
This was a shift to wholism from:
-reductionism, objectification, disease paradigms
-the mind was less separate and distinct from the body,
- from the observing eye of objectification to the participating I of subjectivity
-from linear thinking to complexity theory.
so back to….what is pain and
how is it the same or different
than suffering?
AND
why is this important in my
work in health care?
Dame Saunders : Total Pain
• Pain should be viewed systemically, in terms of the whole person, whole family, whole community, whole team.
• If one of us suffers, others of us will suffer. Suffering is contagious. (Chaban)
Dame Saunders : Total Pain
• Total pain had areas that required our attention, assessment skills and attending.
What does this bio-psycho-social-spiritual model of pain look like?
Bio-pain
• bone,
• nerve,
• muscle,
• tissue,
• organ pain
Psychological Pain
• “How could this happen to me?”
• “ I was a victim of ….”
• “ It should never have happened…”
• “How could I have been so foolish”
• “I warned him/her so many times…but s/he never listened to me…”
• “ I should have been paying more attention…”
Social Pain
“ because of my pain…being so bad, I could not stay at work all day…”
• “because of my pain effecting my work attendance, I got laid off…”
• “because of my pain, and not being able to work full time, I took a part-time job….it pays less, but I can manage it…”
• “because I have lived with pain all these years….I am poorer and do not have a pension”
Psycho-Social pain
• Because of my pain, I can do less in the house….ADL
• Because of my pain, I find it challenging to shop and cook…so much falls to my family…I am a burden to them…not a help.
• My wife and children are afraid to touch me, because I hurt all over…even a hug is painful…
• What is left for me….but only more suffering….I would like to end it here…
• If something happens to you, and you take your life, I will never forgive myself…
• I support your wish to take your life, but our children will never agree with us..
Spiritual pain
• They cannot find a reason for my pain….
• This pain is constant and unrelenting
• This pain is responsible for all my troubles
• What meaning can I give to such suffering…
• No god, would be this cruel….
• “I don‟t know what you did in a previous life to deserve this kind of karma ( pain).
What else, besides the
bio-psycho-social-spiritual
perspective,informs us about
our study of pain?
Black bird sitting
At the edge of night….
Pain
• In health care it is important to distinguish the
different aspects of total pain, as each aspect or
component has a different approach to treating it…
• If you or someone you care about is in pain, and it
effects their ADL, find a pain expert….utilize multiple
modalities…
Pain• Pain can be treated, it can be reduced or minimized
or managed….
• Pain on rest, pain on walking, pain on sitting etc….are all aspects of pain…
• Some people who live with pain say…”If I could have 10% less pain, I could live with that….”( it is less likely you will find someone saying I can live with 10% less suffering).
• 25 years ago….we did not know so much about pain….
Pain
• Studies in pain and pain management were
championed by inter-professional palliative care
clinicians ( drs, nurses, social workers, OT, PT, SLP,
chaplaincy etc.).
• Also by neurologists, psychiatry, psychology.
• Recent studies query if pain is not a disease in
itself…
How is pain similar to suffering?
• Both have aspects of the bio-psycho-social-spiritual,
• Both can be effected by the attitude of the sufferer to suffering,
• Both can be effected ( increased or decreased) through relationship(s) with other,
• Both have meaning attached to the distress.
How does pain differ from
suffering?
In health sciences, much effort has been
placed into managing pain :
-pain scales & pharmaceutics
-positioning & rehab
-counseling
-tolerance or endurance
How does pain differ from suffering?
• In health science, little if anything is taught about how to attend to suffering-ours or theirs.
• We wade waist deep through suffering in health care….and think it does not touch us…
• PTSD, STSD, vicarious trauma, compassion fatigue, demoralization, health issues…( you have to become sick to notice).
There are non-pathological
ways of dealing with suffering.
Changing our attitudinal
stance….
Meditation on Suffering :
Brief Body Scan and Tonglen
Break up into groups of 2
The phenomenology of pain
continued
• Pain and suffering as relational.
• Pain and suffering as comparable and
competitive.
• Pain and suffering as contagion.
• Attending to pain and suffering.
Suffering as relational :
Intra (me and myself) and
inter-relational (me and others)
Hands Up :
who has never suffered?
Do you suffer more than…
the person next to you?
Suffering as competition :
I think I suffer more than you?
If I suffer and you care for me, as I
suffer, do you suffer more or less?
If I suffer and you care about me,
does my suffering change?
If you suffer, and I do nothing about
that suffering( avoid, deny, neglect)
does my suffering increase?
The neuroscience of suffering
Is suffering contagious?
(911, Kennedy & King assassinations)
If it is contagious, this speaks to its flow between and amongst us. Can we use this to influence how we experience and attend to suffering?
Groups of four : Metta
• Break up into groups of four.
• One person choose a painful circumstance to think about and be in. You do not need to share the circumstances with anyone.
• Begin metta, having three people send the sufferer loving kindness.
• All four bring your senses to suffering.
• When the bell rings….bring yourself back and discuss how it felt for all of you.
Using our own attitude to shift
how we experience suffering.
A popular saying, belief, or
challenge….
“ Pain is necessary-but suffering is
optional”.
If not attitude, then how can
we change our perspective on
the nature and purpose of
suffering in our life?
Hypothesis…..
• Pain is a part of everyone‟s life, so is suffering.
• We have a choice whether and how to attend to our suffering- or not.
• The story of “Perhaps”.
Suffering and Happiness
Creating
Suffering or HappinessGoldie Hawn and Dan Segel,
“The Happiness Project”
Segel is suggesting we can create our own
mindscapes!
( qualitative and quantitative studies)
google the above
Philosophical schools and their
views on suffering/happiness
-Hedonism: seek an absence of suffering through pleasure,
-Utilitarianism : the greater good is that which makes the most of us-happy,
-Humanitarianism : seeking to make the unhappy happy ( rather than the happy happier).
-Buddhism….
Pain and Pleasure
• Sometimes hedonism ( the seeking of pleasure as an essential core human experience) is viewed as a way of understanding pain , and what we do when we do not have pain/ suffering (adolescence).
• Does the absence of pleasure mean we are suffering or “neutraling” ?
• Can you feel pleasure while you suffer?
Panetics
• The study of the infliction of suffering ( R .Siu 1988)
• The International Society for Panetics was founded in 1991 to study and develop ways to reduce the infliction of human suffering by individuals acting through professions, corporations, governments, and other social groups.
Panetics
• Iatrogenic suffering-the suffering caused
by the health care system
unintentionally , myopically.
Panetics : examples of
iatrogenic suffering
Values/Belief
-unrealistic vs realistic hope
Conveyance of Information
-truth telling vs optimism
Communication
eg. ”cancer is a word not a sentence”
Behavior
“my doctor is avoiding me”,
“the nurse does not answer my call bell”.
Suffering
• “There are as many ways to suffer as there
are people in the world” …the I of suffering.
• Suffering is also relational. It effects others.
• Our values, beliefs, behaviors, personal and
collective histories inform, inflame or diminish
our suffering responses.
How do we begin to attend to
suffering when it is so
complex, so diverse, so
systemic…..start with one
small change.
Interventional approaches:
Strategies to attend to suffering
Suffering : How one person-
can make a difference….
One day I was called to the gastro-
intestinal floor to meet Sam…
When we attend to suffering :
It changes the nature and
meaning of the suffering.
eg Viktor Frankl‟s: Man‟s Search for Meaning
How the stance we take as people , in
the presence of suffering is life
giving…it can make a difference…
Our perspective- makes a difference Suffering or dukkha :
The 4 Noble Truths of Buddhism
• Life is suffering.
• We suffer because of how we view life (attachment and ignorance).
• The cessation of suffering is attainable.
• There is a path to cessation of suffering.
Mindfulness & Mindfulness
Meditation
This is one approach to tending to
pain and suffering.
-2500 years old
-Contemporary ,evidence based
science
Mindfulness and Mindfulness
Meditation • Can be used as non-pharma pain
management
• Can be used to respond (rather than react) to pain and suffering.
• It can be used as a means of discourse with others about pain and suffering.
• It can be used as part of a multi-modal approach to pain and suffering.
• Can be used for one or many.
A meditation on pain ….
On pain and suffering
• Bio-psycho-social-spiritual
• Relational model ( seeing suffering)
• Philosophical Models ( approaches)
• Spiritual and theological literatures
How we view suffering is the
issue!
The theological, spiritual and
medically philosophical voices on
suffering.
( 1990 influences )
Suffering
Soelle, Dorothee (1975) Suffering, Philadelphia, Fortress Press.
James Emmerson : “On Suffering and Healing”.
Daniel Callahan “The Troubled Dream of Life”, “Setting Limits”.
Suffering-Soelle
• Soelle takes issue with the modern view that suffering is absurd and devoid of meaning. . .
• The first step towards overcoming suffering is, then, to find
a language....a language of lament, of crying, of pain, a
language that a least says what the situation is.
D. Soelle
Suffering-Soelle
• This language may have to lie outside of the medical and psychiatric literature/paradigms of pathology and problem [and in the realm of literature, art, relationship, values, beliefs.]
• The language will be deeply personal, subjective and ontologic ( study of being) .
( Chaban)
Why is it difficult to find a way
to talk about suffering?• Perhaps because suffering is relational.
• Perhaps because suffering is more descriptive than quantifiable ( pain scales).
• Perhaps because suffering is that much more US….we hesitate to speak about something so deeply intimate….what is the language of such intimacy?
James Emmerson
Suffering : Its Meaning and Ministry(a theologian)
Suffering is relational
-self to self
-self to others
-self to nature
-self to organizations
Assumption : no one suffers alone, but we
are myopic to pain and suffering.
Daniel Callahan ( an ethicist)
• Callahan says that through pain,
suffering, dying and death, we
experience a loss of self and through
loss, there is an engagement with
suffering.
Daniel Callaghan
The Troubled Dream of Life( an ethicist)
Loss of ADL, partners, body parts, life….suffering is measured by loss of or reduction in functioning….a diminished self.
In a world of scientific materialism and functioning, the cessation of suffering is viewed as fix the loss, or end the suffering by ending all functioning ( take a life).
Daniel Callahan :
The troubled dream of life : in
search of a peaceful death
Callahan offers insight into how suffering is informed by:
• our view death,
• our care for the critically ill or dying,
• and suggests ways of understanding death that can lead to a peaceful acceptance. ( taming death)…and this informs our suffering.
• Georgetown University Press, 1993 -Social Science.
Callahan „s Taming Death is
Taming Suffering
• This concept has fueled intense debates about legalization of "living wills" and euthanasia.
• Not to have control over ourselves, our environment, our relationships, is to suffer. ( Chaban)
• [Callahan says]we must relinquish the modern desire for ultimate control over the body's fate in order to prepare for the natural end of the human lifespan.
Callahan‟s Taming is
“Setting Limits”• We hold a belief that [because of ] the many advances
in biological research and new technology -[we ]should extend life indefinitely.
• At the same time we place a value on suffering-it is anti-life. It has no redemptive quality. Maintaining the integrity of the self, defending it against suffering may mean we must control suffering at all costs, including perhaps taking a life, to avoid that life enduring suffering (Chaban)
Callahan : “Setting Limits”
• Callahan concludes that despite fears, suffering and high medical costs, if death is "to make sense," we must develop a "shared communal meaning” [of when it is enough…suffering].
1993 Reed Information, Inc..
• In this- Callahan is similar to Soelle asking for us to develop a language of suffering.
• Language as in dialogue, relationship, consequences of choice and attitudinal stances.
How we view death is how we
view our world • Our attitudes toward our own mortality …[ serious illness, dying and
death, suffering]… underlies society's health-care policies, especially regarding care of the dying and termination of medical treatment, as well as laws on living wills, euthanasia, and assisted suicide.
• This is our language of suffering….
• But Callahan ……shifts from legal and policy questions to the relationship of death of the self, as well as death’s relationship with nature, society, and modern medicine.
• This shift is significant because it shifts us away from the 3 D’s : dysfunction, disease and death to relationships with self, self to other, self to world ( Chaban)
• Key point : relationship based care rather than control, management etc.
Suffering feeds off of illusions
Callahan examines some of our present ``illusions'‟:
• that death can be eliminated by eradicating lethal diseases….so we enter into relationship with a disease once
diagnosed more than exploring our selves living with illness.
• we hold illusions that we can manage both our selves and technology well enough to select the moment when medical treatment should be halted….so we pursue longevity even though it may kill us unkindly….
Suffering and Illus ional
Beliefs
• Callahan targets what he terms the ``mistaken belief'' that control over one's life is a necessary condition of self-worth (autonomy, individuality)
• Callahan queries if death is a great evil or a great necessity.
• Callahan believes that public ambivalence and confusion about the proper stance toward death [and suffering] shapes medicine's viewpoint and, in turn, we are shaped by it.
Suffering and Illusional Beliefs
• Our views on suffering make us wish to isolate, control, manage, end suffering , rather than learning to be with it. It then becomes a closed system of belief : our fear of suffering has us trying to conquer it, in conquering it we make it an evil to be overcome, the meaning of it then changes as something that is within us to something outside of us, which threatens to destroy us….and so we try to conquer it…..
Callahan‟s Peaceful death
• We need to change how we view suffering in order to get beyond this closed system of belief about suffering.
• The goal of a peaceful death, he says, should be an integral part of medicine- -but he cautions that this isn't likely to happen outside of a supportive cultural and economic context.
• So how do we change that culture?
How do we begin to change
the suffering…
• Health science became better at extending life.
• In extending life, we extended suffering.
• While science extended life, we did not equally enhance our abilities to attend to suffering.
• Perhaps this accounts for the burgeoning literatures on demoralization and the growing call for euthanasia in end of life care.
What is the nature and
purpose of my life?
• To be happy
• To serve others
• To endure it
• To get by it
• To await death
• To have a family
• To have a life work
Whatever our perception,
when life does not happen as
we expect, we suffer.
Suffering and our not functioning as I
once did : my being a burden
• If I am unhappy with my life, if I suffer, and you watch on as I suffer, do I suffer more?
• If I am unhappy with my life, if I suffer, do I have the right to alleviate my suffering?
• If I an unhappy with my life, if I suffer, do I have the right to ask you to alleviate my suffering?
Creating a new cultural
understanding of suffering
• [Callahan suggests that our] task is to create a new cultural understanding of [suffering] that will help define our social policies…..[and so our understanding of how we respond to suffering].
1993, Kirkus Associates,
Kleinman
• Arthur Kleinman -suffering is both individual and collective
• It is caused by social forces ie war, genocide, persecution, power‟s use and its absence of use.
eg.The EU is an example of the collective suffering impacting on the individual.
The brutal death of a child, is an example of individual suffering touching the collective.
Kleinman and Emmerson
• Suffering can be experienced at an individual, familial, group, communal, organizational, and systemic level.
• Suffering is deeply personal ( subjective) , can be individualized or communalized….. and it is contagious….
Examples of embracing
suffering to reset our moral
compass
• The Neuremburg and Hague war/genocide trials.
• Peter Singer‟s work on animal rights.
• Legal and moral models in health care moving to Harvard‟s principle of “Lessons Learned”.
• Dan Segel‟s work on data and the new 3 R‟s.
End of Day 1
Meditation
Day 2 : Pain and Suffering
Meditation on
Healing the Healer
How we live with suffering…
Against the backdrop of values, beliefs,
attitudes,practices, schools of thought,
champions of discernment and
reflection : our relationship with
suffering is to push it away, resist…
How we live with suffering…
Our primary response to suffering is
control, management, endurance….
eventually this wears at us….and we
begin to feel fatigued, detached and
demoralized.
What if we viewed suffering
As an essential part of life
(as Callaghan views death as an
essential and necessary part of
life)!
Buddhism holds one of the
most thorough views of
suffering in philosophy.
Health Care,
Organizations,
Suffering
and Demoralization
Demoralization
• Is demoralization a natural human condition or phenomena?
• Why is health and wellness promotion not at the center of all health care?
• If we are not attending to our own suffering as professional caregivers, how can we expect to be attuned to the suffering of our peers and clients?
Demoralization
• If we are experiencing more encounters with demoralizing , is there something we are doing in contemporary society to create the conditions which induce demoralization?
• What if we are , without intention, inducing demoralization, what would we need to change?
(Re-)moralization
• Where does moralization come from : professional standards, laws, determent, education, parenting, values, beliefs and practices, relationship , community?
• Could we have a practice that helps us attend to our own suffering and in so doing care for the suffering of others?
Demoralization :
A Phenomenology
Could it be how we view ourselves
and how we are viewed?
From Agrarian to Industrial Revolution*
• Industrial and post industrial revolution viewed body as machine, able to break it into systems and sub systems, parts and symptoms.
• The entrance into how the body worked was through its not working ( dysfunction and dis-ease).
500 Years of Scientific materialism*
Dominant values and measure of
success :
Functionalism…………..Dysfunctionalism
Not to function well is suffering.
Scientific Materialism*
• This is the basis of how we continue to view our bodies, our minds and self in health care , education and workplaces.
• i.e. we are functional, productive , efficient and effective or …..dysfunctional.
• How humanly adequate is it to view our selves in terms of functionality?
Functionalism and the mechanistic
model*
• We have parts.
• We have systems.
• We either function.
• Or we do not function.
• Functionalism determines how we do tasks, how we perform, outcomes.
• Functionalism is measurable.
• If we do not function , we must be fixed.
• To be fixed means things have to be taken away, replaced or rehabilitated….this is health care.
Humanizing : another view ( other than functionalism)
• I am a sentient being ( being not doing).
• To be a sentient being, I must practice being.
• I am not a machine.
• I am not a spirit or ghost in a machine
• Treat me like I am a machine or a spirit in a machine , and I may forget myself, others may forget me and I them, and then we will all despair for all that I am - is what I can do….or not do.
Are we as humans, feeling
demoralized because
We have forgotten about being
human and instead are trying to
live out of the dominant cultural
paradigm of functionalism and
perform as machines?
On Being Human
• If we are faltering under the weight of
doing, functionalism, effectiveness,
efficiency…..(because we are not
machines)……how does this feel?
• Is this a source of demoralization in
health care ?
Demoralization,* Hopelessness and Helplessness
A brief history of the psychiatric
literature
Demoralization: The History
of the Idea*
• Development of the constructs of demoralization and remoralization began in the psychiatric literature in the 1970s… [when Dr Jerome Frank,]… a psychiatrist in the USA, observed a pattern of characteristics in people referred to him for depression, which he believed, were not depression.
MJ Connor, JA Walton
Demoralization
• These characteristics included hopelessness, helplessness, isolation, low self-esteem and despair.
• Such characteristics are often termed existential distress.
• Distinguishing between depression and the existential distress of demoralization is still central in the literature.
MJ Connor, JA Walton JA,
Demoralization*
Dr Jimmie Holland, Sloan-Ketteringfounder and advocate for psych-oncology
Demoralization is perhaps an :
• adjustment and adaptation disorder
• anxiety disorder
Demoralization syndrome :
quantification of symptoms• Complaints of life : meaningless, pointlessness or
loss of purpose･
• Sense of pessimism, helplessness and stuckness in the predicament ･
• Loss of hope for improvement or recovery･
• Potential to develop suicidal thought or plans･
• Associated isolation, alienation or lack of support ･
• Phenomena persisting over more than two weeks.
Demoralization
In the absence of a depressive disorder.
Demoralization is a disorder of hopelessness &
meaningless. DW Kissane, 2008.
Demoralization is another form of suffering (Chaban)
Demoralization and Depression*
• When we determine that there is
depression, we treat depression.
• Historically , you can treat depression
with pharma-care ( anti-depressants).
Treating suffering with relationships
• Research shows that people who have a dx of depression do better with a combined trial of pharma-care and talk therapy (relationships).
• Recent research shows that in depressed populations, training in mindfulness based therapies is as effective as anti-depressants.( relationship with self an others).
(Segal, CAMH )
• If mindfulness based therapies impact on depression, could they have a similar impact on the suffering that comes with demoralization?
• Could the integration of M, MM in our organizations enhance its own resiliency?
Depression as Dx*
The traditional concept of depression :
• Does not capture hopelessness and loss of meaning.
• Does not sufficiently predict wishes for hastened death,[ suicide, wish to die (Chaban].
• Also mood and affect related to depression appears different in palliative care.
･ Lloyd Williams et al 2008･
Hopelessness and
Depression*• Hopelessness and depression often co-occur
and can be different constructs ･
• Both concepts are often used with different meanings -but often overlap ･
Reciprocal risk factors.
• Then how do you distinctly treat hopelessness, helplessness, depression, demoralization?
• Lets go back to the literature.
Depression as Dx*
Effective treatment is not so simple especially when the condition
is so complex.
The traditional concept of depression may be different in
palliative populations than in those who are not palliative.
Psychiatry has found its ideas in a population that has mental
illness, not mental health and not physical illness.
Psychiatry has found its ideas in a population that has mental
illness-driving mood.
Depression and Fatigue* :
When you have:
• a life threatening illness or disability…
• a history of treatment of that illness…
• A history of chronic pain, acute episodes and random symptoms….
• a history of losses associated with illness…
Depression & Fatigue as
Suffering
…you may simply be fatigued physically and this can present to the observer -as depression and demoralization…..
…Few want to study the deep body fatigue that comes with chronic and serious illness…
Demoralization
• Are we psychologizing physical states of medical vulnerability that accompany illness , disability and dying?
• We psychologize states that are resulting from constant exposure to suffering (PTSD, Compassion Fatigue).
• They are disorders…based on functionalism.
Demoralization : a history of
suffering
It is a history of perception :
• Hopelessness
• Helplessness
• Depression & Anxiety
• Fatigue
• Vicarious Traumatization
….19th Century,
Mind and Body ConnectionsIdeas that physical illness may
arise when people suffer
significant losses, and/ or are
subjected to serious
discouragement, is an old one
which repeatedly appears in the
writings of the clinicians of the
nineteenth century and earlier.
(Engel 1955, Greene et al. 1956, Schmale 1958,
1965).
Mind><Body as negative influences on each other
It presents as an inability to
cope, voiced as 'discouragement',
'despair', 'giving up' or
'depression' .
(Engel 1955, Greene et al. 1956, Schmale
1958, 1965).
The Complex of Giving Up ,
Giving inProfessor George L Engel Departments of
Psychiatry and Medicine,
University of Rochester
School of Medicine, Rochester NY, USA.
Helplessness & Hopelessness
If a person has a perspective
that a loss is irretrievable,
then it is likely that there
will be two distinct affects:
helplessness & hopelessness.
(Schmale 1958).
Helplessness>
external environmentWith helplessness, the subject feels
powerless to over-come the loss of
gratification, but perceives the
environment to be responsible and
expects the environment to take over
and provide the missing gratification.
(Schmale 1958)
Helplessness > care complaints,
iatrogenic suffering
Hopelessness>
self is responsibleWith hopelessness the subject assumes
s/he is responsible for the loss of
gratification and cannot be helped even
if the environment takes action.
(Schmale 1958).
Hopelessness >
“I failed treatment”.
Hopelessness
( when self has failed ) :
Cognitive and Behavioral Markers
-Pervasive pessimism about the future
-Cognitive (negative expectations),
-Affective (lack of faith, enthusiasm),
-Motivational (inability to change)
If the mind and body are not
separate , but integral, and they
speak to each other, influence each
other, then can we use this
relationship/pathways to shift away
from problem based thinking
( worry) and instead feed ourselves
health.
Influencing our mood
• If responses to loss are manifest as hopelessness,
helplessness and grief, and we know that they
contribute to conditions that support illness and
morbidity , then learning how to influence our
mood if not determine our mood would be critical
to disease and illness prevention, to health and
wellness .
Chaban
Re-moralization
• Most of our working with mood is based on mood disorders.
• What if we began to work with mood in order to influence it positively?
Re creating moralization
• Can we begin to create the conditions of
health and wellness, by constructing
and monitoring mood, through the
development of skills in : attention,
intention, self regulation ( M,MM) and
thereby generate healthier healers,
healthier teams, healthier health care
environments?
YES WE CAN!
Re-moralization: working with
mood• We would have to change our view of things.
• We would have to look at possibility not only pathology, at learning from error rather than reacting to /judging the error as wrong or mistaken.
• Under all conditions , this view is enabling rather than disabling. It encourages-rather than limits possibilities.
• Connects rather than corrects!
Positive Psychology
• This view is the work of positive psychology.
• The tension between problem based thinking ( the
last 500 years of thought) and positive psychology is
a real challenge of our time that manifests
dramatically in our health and educational systems.
• eg. ADHD versus developing attentional skills in a
child or adult.
A challenge of misusing
positive psychology
• “Positive thinking” often tips over into
areas in which truth telling becomes
secondary to retaining optimism…..
which can often cause increased
suffering with individuals, families and
teams…..when optimism fails to achieve
results of its intent which is often cure (
curare)-to fix…
Contemporary health paradigms :
Curare
Functionalism places value on what is fixable (curare).
The more science finds ways to enhance life, the more we find out that not all of us are fixable ( IVF, disability and episodic disability, disease, aging, death), the more despair we will create as we cling to functionalism as remedy ( Chaban)
What is the alternative to curare ( to fix)?
Curare or Haelan
To fix or to make whole• Change our view from how to fix us, to how to make
us more whole….
• Haelan means to make whole.
• There are many ways to make oneself and ones world whole.
• Haelan takes place every moment of every day that we are alive.
• It assumes impermanence of self.
• Haelan remains within the realm of what is possible.
Wholism As Relationship
“I am a part of all that I have met”
A. Tennyson
To make whole : is to attend to a
series of essential relationship
… an individual is constantly
interacting with his/her many
environments, and at many levels
of organization, from the sub-
cellular and biochemical to the
most external or peripheral, that
of family, work and now even
his/her universe.
Wholism ( haelan)
…[it is] postulated that when [an individual] gives up psychologically, s/he disrupts the
continuity of his/her relatedness to
his/herself and his/her many environments or
the levels of organization (i.e. connectedness)
With this loss of continuity s/he may become
more vulnerable to the pathogenic influences in
his/her external environments and/or more
predisposed to internal derangements with
separation from the external environments.
Whole Personhood : 3 C‟s
-Continuity of relationships ( partners, family, friends, teams)
-Connectedness (safety, authenticity, integrity, intimacy,)
-Context ( environments, disciplines, ethics, role, function) determines us and we it.
Personhood is based on a layering effect of becoming.
Functionalism vs Wholism
• The mechanistic model is a metaphor drawn from the Industrial Revolution.
• We draw many of our metaphors from society and culture.
• The mechanistic model is outdated and does not reflect our reality as persons in relationship and in community.
• It is being replaced by quantum physics which is confirming that all things are in relationship to each other i.e connectedness of all things.
• Can we accommodate our beliefs and practices to this burgeoning science and its epistemology of our being in relationship to all things ?
• How will quantum physics change how we view pain and suffering?
Functionalism vs
Quantum Physics
• Mechanistic model ( functionalism) is being replaced by quantum physics which is confirming that all things are in relationship to each other i.e connectedness of all things.
• Can we accommodate our beliefs and practices to this burgeoning science and its epistemology of our being in relationship to all things ?
• How will quantum physics change how we view pain and suffering?
Quantum Science
• Will insist that we decrease our emphasis on reductionism, objectification and isolationism of parts or symptoms to study them.
• It may ask that we begin to look at wholism, relationship and our own connectedness to …..all things.
Wholism‟s premise
• We are deeply connected both internally
and externally….health depends on
these relationships…rather than the
separate functioning of the components
themselves….
Three major directions in research
I. Hopelessness -predictor of wishes for hastened death
HM Chochinov et al･ W Breitbart et al ･
II. Demoralization ･ Concept proposed as a syndrome including hopelessness･
Measurement -development of a demoralization scale ･
DW Kissane, DM Clarke et al･
III. Development of new therapies ･ Focusing meaning and hope logo therapy and meaning making ( Victor Frankl and Balfour Mount)
A fourth and most recent research
direction :
Change our brain
Change our mind
Dr Richie Davidson
In a pathology and problem based world
view,( which is health care and 500 years
of one way of thinking), we feed ourselves
8 hours of :
data ( 3 R‟s)
right and wrong,
good and bad,
judgments,
managing risks,
avoiding errors-
All this and more -drives our day.
A steady diet of fear and risk
management encourages the
whispering amygdaleWhen do we get to practice the
other parts of our brain that
promote social and emotional
intelligence?
When do we get to shift and
practice mind(body) health?
There is a dramatic shift happening:
-from problems to possibilities,
-from correction to connection,
-from mental illness to creating
mental health!
Given this view : suffering
lived and experienced at an
individual and collective level
is the very stuff of
change….how we relate to
suffering will determine what
that change will look like.
Recognizing the need for
change…
Not to do anything is to risk feeling
demoralized, helpless, hopeless….
The place to bring change is in
ourselves….and how we live…
If we can influence our
attitudinal stance, our mood,
our perspective….
Then how we think, what
we think creates US and
our world.
Change our brains
Change our minds
Change the world
That fourth direction of research is…. touching
clinical, educational , neuro-ethics of decision
making, research, occupational health and
wellness, organizational leadership is a 2500
year old warrior tradition on how to stand in the
presence of endings and change,
and be centered.
It is mindfulness meditation.
Practicing Being.
Demoralization or
Remoralization ?
Instead of looking at demoralization- how about we look at how we arrive at being remoralized, renewed, rejuvinated, re-humanized.
Creating mood, Creating mind
Science and Philosophy
Psychiatry : is working hard to decipher what is mental illness ( pathology) and what creates mental health (possibility).
Philosophers : We are asking for a new language, a new way of seeing, a new way of being and non-being.
Aust N Z J Psychiatry. 2002 Dec;36(6):733-42.Demoralization: its phenomenology and importance.
The change of culture is upon
us• Soelle wants a new way to speak about
suffering.
• Callahan wants a new way of viewing suffering ( death) and he thinks this is only possible if we change culture.
• Emmerson says that new way will be transformative and must be systemic ( the world of WE).
What would be some evidence of a
changing culture of health?
• Health and wellness is to be redefined.
• Health is not just the absence of illness
• How will attending to pain and suffering
impact on our health and wellness?
Social determinants of healthKey Determinants
1.Income and social status
2. Social Support Networks
3.Education and Literacy
4.Employment and Working
conditions
5.Social environments
6. Physical environments
7. Personal Health Practices and Coping Skills
8.Healthy Child Development.
9 Biology and Genetic Endowment
10.Health Services
11 Gender
12 Culture
Can mindfulness and
mindfulness meditation
promote the social
determinates of health.
Health
• According to Social Determinants of
Health much of your health and
wellness is determined by your social
economic status (SES).
Social Determinant of Health
• Key social determinants of health are education, employment and social networks.
• A key precursor to success in education and employment is ATTENTIONAL SKILLS
• A key precursor to social networks is social and emotional intelligence….ATTENTIONAL SKILLS ( how you notice and attend to the feelings of others).
Callahan‟s goal of changing*
culture
a few thoughts…..
To practice M,MM is to
enhance attentional skills,
relationship, educational and
occupational abilities.
Attending to suffering*
• In the 1990‟s when patients started voicing a wish to die, one discipline‟s first response was to fire the patients as they would put the physicians at risk by using their prescribed medications to take their life.
• This is driven by a legal and moral model of attending to suffering.
• I appealed for a more compassionate response to the dying person‟s suffering.
Changing Culture from Me to
We-ism*.
• When we deinstitutionalized care of the
disabled and dying, we placed a great
responsibility on family and community
care without giving it the resources it
needs to support that care. ( Chaban)
Family Caregivers perspective on
“duty to care”*They report :
• Fatigue & exhaustion
• Depression and despair
• Social isolation & marginalization
• Fiscal depletion in spite of caregiver benefits
• Loss of occupational status
• Family Caregivers are now suffering more…
Chaban
Palliative Care :
The Canadian Experience*
• Approx 165-175,000 people die in Canada /yr
• For every 1 death- 5 people are effected ( Health Canada)
• 1 million people effected/per year by death
• If this is a population health issue, why have we not been more successful in implementing care?
( Chaban)
suffering
A burgeoning epistemology
The roots of suffering
• There are as many roots of suffering as there are individual‟s suffering.
• Suffering is a deeply personal experience.
• Its deeply personal nature often causes us to go mute or to feel abandoned by others when we are suffering or when we observe suffering.
• (Chaban)
The roots of suffering
• Suffering lies deeply in the field of
subjectivity .
(Chaban)
A contemporary view of the
roots of suffering Social Determinants of Health ( Health Canada)
What Makes Canadians Healthy or Unhealthy?
This deceptively simple story speaks to the complex set of factors or conditions that determine the level of health of every Canadian.
"Why is Jason in the hospital? Because he has
…..But why does he have a cut on his leg? Because he was playing in the junk yard next to his apartment building and there was some sharp, jagged steel there that he fell on. But why was he playing in a junk yard? Because his neighbourhood is kind of run down. A lot of kids play there and there is no one to supervise them. But why does he live in that neighbourhood? Because his parents can't afford a nicer place to live. But why can't his parents afford a nicer place to live? Because his Dad is unemployed and his Mom is sick. But why is his Dad unemployed? Because he doesn't have much education and he can't find a job. But why ...?"- from Toward a Healthy Future: Second Report on the Health of Canadians
Suffering
• Suffering occurs when an impending
destruction of the person [or a state,
condition that supports that person] is
perceived ; it continues until the threat
of disintegration has passed or until the
integrity of the person can be restored
in some other manner. (Callahan)
Suffering
• Callahan‟s definition of suffering sounds very similar
to the psychiatric definition of hopelessness,
helplessness and demoralization. ( Chaban)
A Contemporary View on
Suffering
• Episodic Disability
• Family Care giving role/duration
• Absence of Social Determinants
Episodic disability*
• Increasing numbers of Canadians are living with episodic disabilities, including multiple sclerosis, arthritis, cancer, HIV/AIDS, diabetes and some forms of mental illness.
• A person can simultaneously live with both permanent and episodic disabilities; however, there are clear distinctions [in quality of life].
Episodic disability*
• An episodic disability is marked by fluctuating periods and degrees of wellness and disability. In addition, these periods of wellness and disability are unpredictable ( impermanence).
• As a consequence, a person may move in and out of the wellness, life and the labor force, and poverty, in an unpredictable manner (impermanence).
Episodic Disability*
• Multiple symptoms, prolongated periods of trying to
manage those symptoms, fluctuating abilities
precedes episodic disability.
• Dying and death follow episodic disability.
• In some instances dying is the trajectory of episodic
disability.
Family Caregivers*
• Are being asked to take on responsibility of care for those who science has extended the lives of.
• Family caregivers can be spouses, adult or child caregivers.
• There are few supports for this role.
How do we live with all this
suffering?
• Deny and avoid it,
• Fight for more life and ignore its fueling
of suffering,
• Plan how to end our suffering on a
specific day,
• Hold it
• Step into it
The cessation of suffering is
possible
You have to make an attitudinal choice of how you are going to view suffering differently than through our history of functionalism.
-Soelle
-Callahan
-Emmerson
The 2500 year old traditional medicine and the Buddhists would agree that the attitudinal stance towards suffering is transformational!
The cessation of suffering is
possible• The search for the cessation of suffering is
the very question that psychiatry is exploring as it looks at the complexity of :
• Hopelessness
• Helplessness
• Depression
• Demoralization
It is also the intent of H/P/EOLC.
The cessation of suffering is
possibleMechanistic medical model tells us all change exists
outside of ourselves by having something like pharmacare, surgery, radiation, chemotherapy or psychotherapy.
The 2500 traditional medical model says change lies within us, between us….
Suffering
• “To avoid our suffering is to avoid ourselves”
• To avoid suffering is to live inauthentically.
HH The Dalai Lama
4 Noble Truths-Buddhism and hermeneutics.
• Life is suffering.
• We suffer because of how we view life ( attachment).
• The cessation of suffering is attainable.
• There is a path to cessation of suffering.
4 noble truths of suffering
• Come from a 2500 year old traditional medicine
( Tibetan).
• It embodies 2500 years of speculation on the nature
of suffering…
• What does a 2500 year tradition of medicine have to
say to contemporary medicine?
Two Levels of Suffering*
• At one level the principal problem is that
of the fear, uncertainty, dread, or
anguish of the sick person in coping
with the illness and its meaning for the
continuation of life and intact
personhood-what might be called the
psychological penumbra of illness.
Two Levels of Suffering*
• At a second level the problem touches
on the meaning of suffering for the
meaning of life itself. The question here
is more fundamental: what does my
suffering tell me about the point or
purpose or end of human existence-
most notably my own?
Callahan
Suffering*
• For the way we move towards our death, ordinarily
through the door of illness, will force us to confront
the problems of suffering , of the evil that sickness,
pain, fear, and despair can bring into our lives.
• What are we to make of them?
(Callahan)
Suffering*
• Nothing less than the meaning of
mortality-the tension between our desire
to live and the knowledge that we must
get sick and die-is at stake.
Callahan
Suffering*
• A life that is moving downhill to death, marked by suffering that comes from grasping the coming destruction of the self, sets the stage for a choice, a choice about the interior stance to be taken toward what is happening .
Callahan
Suffering
• What illness and the threat of death
actually do to me or threaten me with is
one thing, but what I make of them is a
different matter.
Callahan
Suffering*
Chronic, unrelieved pain is likely to be a source of suffering , but the meaning attributed to the pain will make a great difference in how oppressive the pain is taken to be.
The greatest sense of suffering is likely to come when pain, or a deadly illness, seems to threaten the integrity and intactness of one‟s personhood, threatening it with disintegration, a loss of sense of an ordered , integrated self. Callahan
Attending to Suffering*
• Dis-ease management, legal and moral models of care will not fully and perhaps adequately be able to either hold our suffering or attend to it.
• We as a society need to dig in deep to what is suffering, identify it, feel it, explore it, abide by it, and then perhaps-change it into something else that is life giving and restorative if not replenishing. (Chaban)
Attending to Suffering*
• Or we simply view the cessation of suffering as the cessation of life in a body…..and we end life as a means of ending suffering.
• Many of us in H/P/EOLC have become supporters of euthanasia because of what we have seen as the limits of our abilities as science pursues life extension…
• Is this our own helplessness and hopelessness?
Practicing Dying Daily:
Attending to Suffering• What happens when we stop thinking of how to die, when
we will die (functioning) and we begin to practice dying every day.
• We begin to live in the moment rather than a past or future.
• We cherish everything more.
• We honor more.
• Relationships and emotion are held differently.
• Practicing dying is part of the 2500 traditional medicine.
Suffering
Could it be that the roots of suffering and
hence the cessation of suffering lies in
how we view suffering itself, and how
we view the self in suffering?
Changing the culture
• How the west views suffering
• How the east views suffering
1. Suffering is met in failure to adapt or succeed.
2. Self mastery, stability, and enhancement is goal o western psychotherapy.
3. Thoughts and feelings understood as determined and determining.
(Klein)
Western Psychotherapy
Culturally Normative
Responses to Suffering:
• Avoidance
• Distancing.
• Designification
• Denial
• Numbing
• Ideology of Individualism
• Pleasure seeking
• Addictions
• Mobility/distraction/ excitement
• Distractions
• Adventurism
Stanley Klein
Turning to the East:
Buddhist-based Psychotherapy
Turning to the East:
Buddhist-based psychotherapy
"I teach about suffering and the way to end it"
Shakyamuni Buddha
Eastern Psychotherapies
• Mindfulness and Mindfulness meditation
practices have shown themselves to
have an impact on:
• Depression
• Anxiety
• Self regulation ( anger , impulsivity)
Eastern Psychotherapies
• Mindfulness and Mindfulness meditation practices have shown themselves to have an impact on:
• Cardiac systems
• Neurological systems
• Immune Systems
Mindfulness and Mindfulness
Meditation
• Both qualitative and quantitative
research has shown mindfulness
meditation practices to have an impact
on health-both physical and mental.
• How is this possible?
1990‟s*
• With new imagining technologies , we
began to map the brain.
• As we mapped the brain, we discovered
the mind.
• As we discovered the mind, we
discovered….
What a 2500 year old traditional medicine has
to say to contemporary medicine…
• We can choose how we want to be in
the world through how we respond to
our thoughts ( self regulation)
The making of Minds*
3 R‟s
• Reading
• Writing
• Arithmatic
• “Just do it!”…tasks, data, outcomes,
performance .
Other 3 R‟s
• Relationship
• Reflection
• Resiliency
( Dr D. Siegel)
• Compassion,
empathy, care
moral ization
• “If it is fired it is wired”
• The repeated exercising of the brain to be
data and information driven, creates poor
moral universes and poor mental health
hygiene! ( Dr Dan Siegel)
De moral ization
Hypothesis : without intention…
Care and our compassion has been whittled down and displaced by data, information, tasks, outcomes.
We have diluted if not dismissed time for relationships, reflective practice and in turn our resiliency diminishes.
We are creating the conditions of our own demise as human beings both in health care and educational systems.
De moraliz ation
We require certain pathways, neuro-practices (social, behavioral ,
cognitive) to be the best humans we can be.
What do we have to do differently to create the neuro-pathways
to bring care, compassion and courage back into our human
experience.
The new “CIA”
• Compassion in Action means practicing
mindfulness and mindfulness
meditation.
• Attention
• Intention
• Self Reflection
• Practice, Practice, Practice, Practice….
The recent history of an idea
• Mindfulness : paying attention on purpose.
• Mindfulness Meditation : A methodological approach to practicing mindfulness ( mindful walking, sitting, lying, eating, speaking, listening).
• Integrate Mindfulness and Mindfulness Meditation.
• Seek opportunities to apply Mindfulness and Mindfulness Meditation.
Mindfulness Meditation
Research• Brain can create mind
( feelings, compassion, ethics, ways of seeing and being)
• Mind can create community
( from me to we).
• CIA -“Be the change you wish to see” (transform suffering, peace not war, care not fix)
Changing Culture :
A new epistemology• Haelan and curare
• Integrative Health
• Inter-professional expertise
• Me to We
• Eastern and Western psychotherapy
• Authentically attending to suffering through voice and
relationship ( more than pharma-care)
• Practicing Dying every moment of every day
Remoralizing
• Facilitating remoralization requires time and sensitivity to people's personal narratives ( the subjective not objective measures).
• Difficulty in achieving such a response in the present efficiency climate of many health institutions which can lead to moral distress.
Connor MJ, Walton JA, Nursing
2011 Mar;18(1):2-11: 10.1111/j.1440-1800.2010.00501.
Graduate School of Nursing, University of Wellington, Wellington, New
Zealand.
Remoralization
Compassion
does not cost us more
but it does
encourage us to be more.
Chaban
Bibliography
MM • Stanley Klein MSW, RSW
• Michele Chaban MSW, RSW, PhD.
• Faculty of Social Work, University of Toronto
• Sept 09
• Introduction to MM:
• 1. Mindfulness in Plain English
• Ven Henepola Gunaratana
• 1991, Boston: Wisdom Publications
• 2. Coming To Our Senses
• Jon Kabat-Zinn
• 2005, N.Y., Hyperion
• Supporting MM Practice:
• 1. Comfortable With Uncertainty
• Pema Chodron, 2002, Boston: Shambhala
• 2. Wherever You Go, There You Are
• Jon Kabat-Zinn, 1994, N.Y., Hyperion
•
Bibliography
Introductions To Buddhism:
• 1.Being Nobody, Going Nowhere
• Ayya Khema,1987, Boston : Wisdom Publications
• (Winner of the Christmas Humphrey's Award Best Introductory
• Buddhist Book)
• 2. One Dharma : Meditations on the Buddhist Path
• Joseph Goldstein, 2002, San Francisco : Harper
• 3. What Makes You Not A Buddhist
• Dzongsar Jamyang Khyentse,2007, Boston: Shambhala
• Buddhist Texts:
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• Eric J. Cassell,1991, NY, Oxford U. Press
• 2.On Suffering:
• Dorothee Soelle, 1975, Philadelphia: Fortress
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