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 life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

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 questionsregarding identity, meaning, suffering and death, guilt, reconciliation, hope and despair

Considerations and attitude based on values

Religious concerns and beliefsconcerns 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 institutionCultural 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 to give and receive lovethe need to be understoodthe need to be valued as a human beingthe need for forgiveness, hope and trustthe need to explore beliefs and valuesthe need to express feelings honestlythe need to find meaning and purpose in life.

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 timeI watch my body changeTired I sit staring out at lifeBooks and music transport me beyond my bodyNine months finally pass I give birth to my childAll the discomfort and pain is now justified

Chemotherapy and radiationTwelve months seems like a long timeI watch my body changeTired I sit staring out at lifeBooks and music transport me beyond my bodyTwelve months finally passI give birth to myselfAll the discomfort and pain is now justified

(Anonymous, from website of Bernie Siegel)

Reflective domain:

shared by the nursing professionand 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.

AcceptanceSupportCare

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 presencea comforting presencea hopeful presence

An accompanying presence

Being thereBeing 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 recoveryHope beyond recoveryLiving 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 dignityFor the continuing success of the childrenThat the partner will find the support (s)he needsThat 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 compassionthat 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