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Illness.
A time for reflection and
meaning making.
Listening
to the spiritual questions.
Jenny Cuypers, chaplain
Rose:Who am I?
What would it be like to have to ask this
question?How, as carers, do we respond?
At times of illness, we are at our most vulnerable.
In that space of brokenness, deep questions are
asked, re reflect on life and we are trying to make
sense of it and get some answers.
There are no definite answers.
There s a need to be accompanied, to be listened
to.
What disturbed me deeply
and has continued to disturb me,
is the almost complete lack
of spiritual help
for the dying that exists
in modern culture.
Sogyal Rinpoche,
The Tibetan Book of Living and Dying.
The crisis of illness.
What are the questions of
spiritual pain?
How can we respond?
WHO definition of palliative care
Palliative care is an approach
that improves the quality of life of patients and their
families facing the problem associated with lifethreatening illness, through the prevention and relief of
suffering by means of early identification and impeccable
assessment and treatment of pain and other problems,
physical, psychosocial and spiritual.
The spiritual pillar tends to be the one that is most hidden,
most intimate, least concrete, least measurable.
Spirituality is the aspect of humanity
that refers to the way individuals
seek and express meaning and purpose
and the way they experience their
connectedness
to the moment,
to self,
to others,
to nature
and to the significant or sacred.
Christina Pulchiski
The European Association for Palliative Care:
Spirituality is the dynamic dimension of human
life that relates to the way a person (individual
and community) experience, expresses and/or
seek meaning, purpose and transcendence and
the way they connect to the moment, to self,
to others, to nature and to the significant
and/or the sacred.
Existential questions
regarding identity, meaning, suffering and death,
guilt, reconciliation, hope and despair
Considerations and attitude based
on values
Religious concerns and beliefs
concerns re beliefs, faith, God, the transcendent –
including the concept of Horizontal transcendence as
understood in the atheist literature
Spirituality ? Religion?
Spirituality
is more individualistic and self-determined,
whereas religion typically involves connections to
a community with shared beliefs and rituals.
In discussing these matters with patients
it is best to use the term spiritual
because of its broad and inclusive nature
which allows the patient
to interpret the meaning for himself or herself…
H. G. Koenig
People often say:
I am not religious but I am spiritual
I am Catholic but
I don’t go to mass anymore
Parish catholics:
those who adhere to beliefs and are practicing
Spiritual catholics:
those who adhere to all or some beliefs
but have little interest in the institution
Cultural catholics:
those who may go to funerals and weddings
but have little or no faith grounding
There is a vagueness and lack of
clarity around the term spirituality
and that can actually be a strength.
It lends to an openness to the use
in the care setting.
It allows for an attitude of
searching, for development of
understanding and growth.
Illness: a time of crisis
Our culture is one of being in control, being
busy, of being productive, of perfection…
The patient is transported into a world of
inactivity, dependence, boredom, lack of
control..
A shift from
the forgetfullness of
being
to
a state of
mindfulness of being
Trying to make sense
of a critical event:
Why should this have happened?
Does it have any purpose for them or the family?
What resources can they draw upon
for support and guidance?
an inner dialogue begins
If spiritual care is to be
of benefit and support,
it must engage at some point
with that ongoing inner dialogue
within a relationship of trust.
Basic spiritual needs:
the need
the need
the need
the need
trust
the need
the need
the need
in life.
to give and receive love
to be understood
to be valued as a human being
for forgiveness, hope and
to explore beliefs and values
to express feelings honestly
to find meaning and purpose
Spiritual questions are often
asked, expressed, hinted at
in small every day things….
How do we notice them?
Listening for spiritual needs
at times asking direct and open
questions
at times listening for the answers
in the patient’s story
What do you believe in that gives meaning to your
life?
How important is your faith / religion/ spirituality
to you?
Do you find comfort from your beliefs and
practices at the moment?
What is particularly helpful to you?
Spiritual needs
*met through physical care
*through reflection
The secret in the care of a
person is in the caring…
Francis Peabody
All health carers
have the potential to contribute
to the spiritual care of the sick
and dying
and yet there is a definite role
for specific spiritual care.
Questions asked
by chronically ill and dying
patients
Why is this happening
to me now?
When someone gets ill, their view on life gets dismantled,
their relationships changes, they experience losing control
in many areas of their life, their experience of God can
change…
And that loss can lead to seeing no sense, no meaning.
The pain is often expressed n questions such as: Why?
Why me? What have I done to deserve this?
The need
to explore beliefs and values
Will my family survive
my loss?
Will I be missed?
Will I be remembered?
Will I have time to finish
my life’s work?
When we have to let go of life,
we have to hold on to that life
one more time.
In the end phase of life,
a lot of energy goes to the past
and to re-live that past.
We try to find the story in our life,
to find the wholesome-eness of life.
Reflecting on the end of life
Is there a desire to live?
To die?
Arranging to meet family?
Asking for sacraments / rituals?
Attachment
is paramount in our culture.
How to let go?
Is there a God?
If so,
will He be there for me?
There can be a deep feeling of
abandonment, a deep spiritual pain. We can
not change that feeling by an answer, only
by listening and acknowledging it and by
being compassionate and loving…
While such existential concerns are normal
and to be expected in the short term,
some patients get stuck in these spiritual
struggles and without help are unable to
resolve them on their own. The result is
that they can not rely on spiritual beliefs
that might otherwise give them comfort
and hope.
Koenig
It could be because of
past experiences of teachings.
It can be very helpful for them to have
someone listen to their pain and support
them in a non judgemental way.
That in itself is transformative.
It helps to move away from what has been
taught and had to be accepted,
and to grow in their own faith ,
to help them find their ground
and their inner self again.
What will happen to me
after I die?
It is not unusual for people,
even those who have been religious all
their life, to question life after that.
That what was learned, now has to be
integrated.
Beliefs and hopes regarding what
happens after death.
Does she believe in the afterlife? The
resurrection?
Or is it over?
Full stop? Or is one’s life taken up in the universe?
Does she hope to continue living in the memory of
others? Will she see them again?
How does she experience the presence/absence of
those who went before her?
What about her relationship with God?
What about faith?
Is prayer important?
or
Are there non-religious rituals available to the
patient? Maybe of their own making?
Death is the ultimate unknown. In the last
century people were brought up with vivid
descriptions of the after lfie. Now there is
often silence. Taboo.
How doe we recognise the fear of the patient?
In as far as we can bring some peace, safety
and openness to those feelings
and can recognise the thougths and feelings of
the terminally ill.
We need to become aware of our own feelings
and thoughts, of our own mortality.
Forgiveness
I am sorry,
I forgive you,
I love you,
I thank you
A dynamic process
Within the inner world, spiritual and
religious, there is always a dynamic
process going on.
There can be growth through suffering.
Nine months seems like a long time
I watch my body change
Tired I sit staring out at life
Books and music transport me beyond my body
Nine months finally pass I give birth to my child
All the discomfort and pain is now justified
Chemotherapy and radiation
Twelve months seems like a long time
I watch my body change
Tired I sit staring out at life
Books and music transport me beyond my body
Twelve months finally pass
I give birth to myself
All the discomfort and pain is now justified
(Anonymous, from website of Bernie Siegel)
Reflective domain:
shared by
the nursing profession
and chaplaincy
What are the spiritual identifiers?
Is the patient at peace with herself?
Is she hopeful, or despairing?
What nourishes her personal sense of value?
Does her beliefs help her to cope with her
anxiety about death and with her pain?
What are the unresolved issues and fears?
Spiritual care:
I have sought to define spiritual care,
not as a particular activity or intervention,
but as a quality of a relationship
that is a professional relationship,
but one focused on the person
rather than the illness,
and that allows for a degree of reciprocity
in order to be a real
rather than a wholly one-sided
relationship.(Colin Jay)
Spiritual care:
a process of relationship.
Acceptance
Support
Care
How to accompany someone?
Listening
Presence
Hope
Compassion
Listening
Being aware and showing
respect for the unique
spirituality of the patient
No one wishes to be “rescued”
with someone else’s beliefs.
Remember you task is not
to convert anyone to anything,
but to help the person
in front of you get in touch
with his or her own strength,
confidence, faith and spirituality.
Sogyal Rinpoche
Presence
an accompanying presence
a comforting presence
a hopeful presence
An accompanying presence
Being there
Being with
Being with someone has an inherently
spiritual quality.
Being in the emotional space of a
person who might be without hope, to
enter with them in their darkness.
Being there with them, to listen and
speak from that connection of a shared
experience and easing their sense of
isolation.
Being there without agenda.
The art of being present and still.
Just as we think, there is nothing going
to be said, the floodgates open.
Mere being present allows the patient
to be himself and to speak, think, feel
from that deeper inner self.
Everything is within, it is all there but
it has to be allowed to surface.
If we keep talking, if we keep filling
space, it won’t happen.
A comforting presence
Comfortare: to strengthen
Gaining strength from being able
to be themselves, without masks,
in a relationship of trust.
Often just staying silently
in the pain of the other person’s
experience,
because words won’t make sense.
The gift of presence,
so that the other can depend on you.
Having no answers or solutions may be
uncomfortable for us. that is why we
need to pay attention to what is gong on
within ourselves when we care for the
sick or the dying.
A hopeful presence
Hope
Hope for recovery
Hope beyond recovery
Living in a hopeful manner
Hope beyond recovery
Hope for recovery gets encouraged.
But when active treatment is
withdrawn there is a possibility of
family remaining extra positive,
while the patient accepts reality.
Lack of support at this time,
is particularly destructive of hope.
Hope beyond recovery
The hope to die with dignity
For the continuing success of the children
That the partner will find the support
(s)he needs
That their life contribution will continue
and be found useful
Living in a hopeful manner
A hope that accepts death
and nevertheless finds a
sense of ultimate meaning in
the life that has been lived
and is lived now.
To stay with the person,
not to run from
but to enter into the darkness and not
to offer one’s own answers but
facilitating the patient to mobilise their
own inner resources and find their own
answers to what makes meaning for
them.
Being with the other person in the way
that allows that person to be
the person they need to be.
That kind of presence in itself becomes
a hopeful presence.
Compassion
It is with compassion
that we listen to the small voice,
to what lies underneath.
It is with compassion
that we are present
at the time of suffering,
It is at times saying:
“I don’t know”.
A time for letting go
Slowly
she celebrated the sacrament of letting go.
First she surrendered her green,
then the orange, yellow, and red.
Finally she let go of her brown.
Shedding her last leaf
she stood empty and silent,
stripped bare.
Leaning against the winter sky
she began her vigil of trust.
Shedding her last leaf
she watched its journey to the ground.
She stood in silence
wearing the colour of emptiness,
her branches wondering:
How do you give shade with so much gone?
And then,
the sacrament of waiting began.
The sunrise and sunset watched with
tenderness.
Clothing her with silhouettes,
they kept her hope alive.
They helped her understand that
her vulnerability
her dependence and need
her emptiness
her readiness to receive
were giving her a new kind of beauty.
Every morning and every evening
they stood in silence
and celebrated together
the sacrament of waiting.
Macrina Wiederkehr
When we work in the field hospital,
we cannot be afraid of the dark.
Human nature does not like messiness! We like things to be
clean and orderly… We tend to shy away from people who
are hurting. But wounds are rarely clean.
They are bloody and raw.
Darkness abounds.
Joseph Kelly
Bibliography
Michael Kearney, Mortally wounded. Stories of soul pain, death and healing, Marino
Books, Dublin 1996
Steve Nolan, Spiritual care at the end of Life. The chaplain as a hopeful presence,
Jessica King Publishers, London 2012.
C. Pulchaski, Touching the Spirit. The Essence of Healing.
C. Pulchaski, Improving the Spiritual Dimension of Whole Person Care. Reaching
national and International Consensus., Journal of Palliatve Medicine,Vol 17, Nr 6,
2014
J. Swinton, Moving beyond clarity: towards a thin, vague and useful understanding
of spirituality in nursing care. Blackwell Publishing Lrd, Nursing Philisophy,2010, P
226-237,
H.G. Koenig, Religion, Spirituality and Medicine: Research Findings and Implications
for Clinical Practice. Southern Medical Association, 2004
P.W. speck,. Spiritual Care in Health Care, Scottish Journal of Healthcare
Chaplaincy, Vol 7, no 1, 2004
www. scotland.gov.uk/publications/2009/01/30110659/3

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