MODULE 5: SPIRITUAL ISSUES AND SUPPORT LEARNING OBJECTIVES: 1. Understand the spiritual needs of the dying person and the family 2. Understand different spiritual concepts and practices
3. Understand the role of the volunteer in providing spiritual support 4. Develop the skills to provide spiritual support for the dying person and family COMPETENCIES: At the end of module five, volunteers will be able to: • Describe the spiritual issues and needs of someone who is dying and their family • Describe how the palliative care team will provide spiritual support • Describe the role and limits of the volunteer in providing spiritual support • Demonstrate the ability to provide spiritual support.
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1. WHAT IS SPIRITUALITY? Spirituality is a personal journey. It has been defined in many ways: as the “innate yearning,
A s you ought not to attempt to cure the eyes without the head, or the head without the body, so neither ought you to attempt to cure the body without the soul... for the part can never be well unless the whole is well... You must begin by curing the soul.
longing for harmony and wholeness”, “the strength to go on”, the “experience of striving for self-transcendence, to be in a relationship with the other” (author unknown), and “the energy within each person that looks for meaning and purpose in life”. There is a difference between spirituality and religion. Religion is an organized system of
Plato
beliefs, practices, rituals and symbols while spirituality is a personal quest for answers to questions about life and meaning. Not everyone will need religious care, but all need spiritual care. Spirituality is the whole life of the person lived in relationship with the transcendent (God). Spirituality can be expressed in many ways – formal and informal. Some people do not belong to a religion but still lead highly spiritual lives. Others live out and express their spirituality within an institutionalized religion. 2. SPIRITUALITY AT END OF LIFE Spiritual care is an integral part of hospice palliative care. As people approach death, they reflect on the meaning of life. They tend to review their life, evaluate the choices they’ve made, and search for some kind of meaning in their illness (e.g. Why me? Why now?). Most of us want our lives to be meaningful and useful: to have a sense that our lives counted for something.Some of the ways that people find meaning include: • Belonging to a caring community – which can be a group of family and friends, including the hospice palliative care team – that nurtures all members • Telling their stories – including stories of shame, pain and grief – so they can move from a sense of guilt or anger to forgiveness • Healing old wounds – when stories are shared and accepted with love and in a non- judgmental way, it can be a great relief for a person and help heal long-held pain. • Experiencing moments of transcendence or peak experiences – such as a beautiful sunset or a new insight – or feeling a sense of awe and wonder
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• Feeling valued by others • Developing one’s higher self or soul – some people may have neglected this longing for a greater sense of wholeness because of fear, lack of understanding or a busy lifestyle but this desire may surface in a profound way as a person faces a life threatening illness. 3. THE VOLUNTEER’S ROLE IN SPIRITUAL CARE Because volunteers have so much contact with the dying person and family, they are likely to see the person striving to find meaning in their situation and dealing with spiritual issues. Volunteers can provide spiritual support in many ways.
We are to be a calming presence and if those we are with want to talk they will. We can come with our own agenda believing that the other needs to talk about dying or what we consider spiritual matters. The reality is that some never will and it is their choice. This doesn’t mean that we are not offering spiritual care. Cassidy S. Sharing the Darkness, 2003
1. RECOGNIZING A SPIRITUAL NEED It can be difficult to recognize when someone has a spiritual need. Some people may have clear spiritual goals that they pursue through prayer, reading or being close to nature. Others may wrestle with their faith when they find they are dying. People may ask questions about the future,
such as how will I die, when will I die or what comes after death. It is possible that family members are reluctant to talk with them about death so they turn to the volunteer. It’s important for volunteers to listen carefully to what the person is really asking. The questions may mean the person is frightened and seeking reassurance or just wanting someone to be present with them in their reality. One sign of spiritual need or distress is greater anxiety, which may be expressed as anger against God, life, family members – even the volunteer. The volunteer can learn to recognize spiritual need by listening and being sensitive to small clues. For example, is the person generally content with what he or she has done in life? Is he generally more forgiving of others? Can she identify a purpose for her existence? Or does the person express a lot of bitterness, regret or anger? Those who are angry are more likely to need more spiritual support.
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2. PROVIDING SPIRITUAL SUPPORT Hospice palliative care volunteers can provide spiritual support by: • building trust
Journaling Keeping a journal can be a good way for the dying person and/or family member to reflect on their experiences, frustrations and moments of joy – past, present and future. The volunteer can help by: • suggesting themes to help them start writing, such as life-changing events, relationships, work and leisure • offering to write for the person • asking questions that will reveal greater detail • being there to provide support.
• encouraging the person to talk about things they have done in their lives – things they feel proud of – so they can find meaning or value in their lives • listening patiently and gently to people’s stories – how it was (past), how it is (present) and how it might be (future) -- and letting them tell their stories more than once if they need to • treating the person with dignity and valuing them for who they are • respecting the person’s and family’s belief systems and responding according to their belief system (rather than the volunteer’s belief system) • sharing personal beliefs only when asked by the person or family member • never, never proselytizing or trying to convert the dying person or family member • providing whatever the person or family asks for in terms of spiritual support including contacting or not contacting their faith leader in the community • being present even when people want to go into difficult places. Being comfortable in the silence and allowing the other to explore. 3. UNDERSTANDING PEOPLE’S SPIRITUAL BELIEFS As a volunteer, you may be providing support for people from different faith communities. To
NOTE: Journal entries must always be kept confidential.
Spirituality is about building mutual human relationships, and creating reflective spaces, rather than making assessments and delivering interventions. The volunteer should: • accept the individual unconditionally • allow the person to lead the conversation and define their need for spiritual care • practice being able to sit with questions, not having the answers. understand that, as part of their spiritual journey, people may pose questions with few answers. • recognize that spirituality includes all the person’s life experiences
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fulfill your role, you have a responsibility to understand the dying person’s and family’s spiritual belief system, and to provide spiritual support that reflects their needs and beliefs. See page 58 for a description of different faiths and their traditions and practices related to death and dying. If you are uncertain about the family’s customs and rites – ask them. 4. KNOWING WHEN TO ASK FOR HELP When providing spiritual support, volunteers may sometimes feel out of their depth. They may not know all the answers or know how to cope with the person’s struggle. Remember: • Volunteers are not expected to have all the answers. • It’s enough to stay with the person in the conversation. • If you feel overwhelmed, talk to your supervisor or the pastoral care worker on the team.
Practices Related to Death
Religion
Philosophy/Beliefs
Aboriginal • Spirituality is a very personal thing. • Ceremonies and rituals are a
• Burial customs and traditions as well as mourning customs vary among cultural groups and from Aboriginal community to Aboriginal community. • It is important to seek guidance from the family members or elders in order to provide the most appropriate support.
manifestation of spirituality. Myth, ritual and ceremony are used at each stage of life to help adjust to a new spiritual transformation. • People believe in a Creator that provided laws to live by, which are internalized. In general these laws include: respect, honour, courage, kindness, sharing, acceptance and communication. • There is a strong belief in the unity of all things both animate and inanimate. • The concept of the circle of life,
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balance, harmony and relationship often expressed through the medicine wheel. • Many Aboriginal cultures have incorporated Christian beliefs into their spiritual lives. suffering that can be mediated through “right living”. • People seek “truth” through middle way between extremes of asceticism and self- indulgence. • People emphasize meditation to relax mind and body to see life in true perspective. • “Right” living will enable people to attain nirvana. • There is belief in reincarnation of the soul. • Human life is pervaded by • Grounded in teachings of Jesus Christ • World and everything that exists was created and depends on God. • Belief in afterlife and soul is integral to faith.
Buddhism
• Quietness and privacy for meditation is important. • Goal at death is for the mind to be calm, hopeful and as clear as possible. • There are no special rituals regarding body. • Cremation is common.
Christianity (Catholic, Protestant, Eastern Orthodox)
• As death approaches, specific rites and observances may be required based on
the person’s denomination (e.g. Catholic, Protestant, Orthodox)
• After death there is a two to three day visitation to home (funeral home) prior to funeral. • Funeral/memorial service to celebrate life of deceased and departure of soul to afterlife. • Burial or cremation occurs after funeral service. • Married women wear a nuptial thread and red mark on the forehead; males may wear a sacred thread around the arm; dying patient wearing neck/arm thread may indicate a special blessing -
Hinduism
• Wide variety of beliefs are held together by an attitude of mutual tolerance: all approaches to God are valid. • Goal is to break free of imperfect
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world and to reunite with Brahman (i.e. everything physical, spiritual and conceptual). • There is belief in reincarnation and transmigration of soul until reunited with Brahman. • People disapprove of killing of living things (vegetarian).
none of these symbols should be removed. • Readings from Bhjagavad Gita comfort patient. • It is important that last thoughts or word be of God to ensure rebirth to higher form. • People prefer to die at home and as close to mother earth as possible. • It is important for family to wash body; eldest son arranges funeral. • Cremation is usual with ashes scattered on water (preferably the holy river Ganges). • Set pattern for mourning and final service two weeks after death. • Friday is holy day: cleansing ritual prior to prayer, and head must face towards Mecca • Reading from Koran will comfort the dying person who is encouraged to recite verses. • After death, a spouse or relative of the same sex washes the person’s body. • Burial occurs soon after death; it is simple with no coffin. • There are three days of mourning except for the spouse who mourns for four months and ten days.
Islam (Muslim)
• It is a complete way of life, based on teachings of the Prophet Mohammed and interpreted through the Koran. • There is a belief in God: all people are created, live, die and return to God by God’s command. • Death is part of life and a rebirth into another world. • There is a belief in an afterlife. • Pork and intoxicating substances are prohibited. • Rituals are shaped by local culture. • There is a belief that God has a covenant relationship with humans and salvation is achieved by obeying God’s laws. • People believe they have been
Judaism
• As death approaches, readings and prayer provide comfort. • There are practices at death to • honour dignity of body • assist bereaved through process
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chosen to be examples to all. • The “Messiah” will come to bring world to perfection. • The faith is highly family focused.
using laws of the whole mourning ritual
• affirm basic belief that life and death are part of God’s plan • Burial takes place 24 to 48 hours after death; body must not be left unattended from death until burial. • Family receives visitors and food gifts during seven day SHIVA. • There are 30 days of social withdrawal with one year official mourning. • There are specific services of remembrance after death and at unveiling of tombstone. • There are five traditional symbols which could cause distress if removed from dying person: • Kesh - long uncut hair of face and head • Kanga - hair comb (symbol of discipline) • Kara - steel bangle on wrist (strength and unity) • Kirpan - sword, worn as broach (authority and justice) • Kachha - special shorts (spiritual freedom). • Family members may play a role in preparing the body. • Cremation with ashes scattered on water is common. • Mourning services last ten days and final service marks end of official mourning.
Sikhism
• There is a belief in one God for all humanity. • The faith has incorporated many Islamic and Hindu beliefs and preaches religious tolerance. • People observe dietary rules and other rituals and customs.
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THE ROLE OF PRAYER Prayer may be important to some people and not to others so it’s important for volunteers to take the lead from the dying person and family. If someone asks you to pray with him or her, ask “What would you like me to pray for?” People often find it helpful when prayers include their fears or concerns. Here are examples of prayers from different faith traditions taken from the Oxford Book of Prayer (1989) that volunteers can use when someone asks for a prayer.
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A Buddhist Litany for Peace
As we are together, praying for Peace, let us be truly with each other. Silence Let us pay attention to our breathing. Silence Let us be relaxed in our bodies and our minds. Silence Let us return to ourselves and become wholly ourselves. Let us maintain a half-smile on our faces. Silence Let us be aware of the source of being common to us all and to all living things. Silence Evoking the presence of the Great Compassion, let us fill our hearts with our own compassion -- towards ourselves and towards all living beings. Silence Let us pray that all living beings realize that they are all brothers and sisters, all nourished from the same source of life. Silence Let us pray that we ourselves cease to be the cause of suffering to each other. Silence Let us plead with ourselves to live in a way that will not deprive other living beings of air, water, food, shelter, or the chance to live. Silence With humility, with awareness of the existence of life, and of the sufferings that are going on around us, let us pray for the establishment of peace in our hearts and on earth. Amen.
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Sikh Prayer I am thirsting for your love, my Beloved!
I shall make this body a lamp, and my tender heart shall be its wick;
I shall fill it with the scented oil of my young love and burn it night and
day at Your shrine, O Beloved!
For Your love I shall sacrifice all the wealth of my youth;
Your name shall be the crown for my head.
I am longing for You, O my Lord: for the season of the sowing has come;
but You are not beside me.
Clouds gather on my brows and my eyes shed heavy showers.
My parents gave me to You, I have become Yours for ever; who but You
can be my Lord?
This separation troubles my breast; make me Your own; make me perfect
like You, O Lord of Perfection!
Mirabai, 16th Century
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A Jewish Prayer
Sometimes I feel lonely, and from the depths I cry unto Thee, and within me, Thy voice answers me, and I know that Thou, Eternal Friend, art near me. Sometimes the sense of failure seizes me, and I am disheartened. Unto Thee do I raise mine eyes, and the light of my heavenly Father shines upon me, and bids me to persevere. Sometimes my daily life oppresses me. Unto Thee do I lift up my soul, and I realize that by doing my duty manfully and cheerfully I am serving Thee, Divine Master,
and my task is revealed to me as something good and sacred.
Sometimes I am sad and sick at heart, but when I think of Thee, Spirit of perfect righteousness and love, a wonderful joy comes to me, for I know that Thou art guiding me. O Lord God of Hosts, surely Thou wilt ever comfort me. Blessed be Thy Name for ever and ever. Amen.
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A Hindu Prayer
You, O Lord, are the body’s protector.
My body protect.
You, O Lord, are the giver of life.
Grant life to me.
From You, O Lord, comes brilliance of mind.
Illumine my mind.
Whatever is lacking to my being, O Lord,
Supply that to me.
O Lord of the home, best finder of riches
for our children are you.
Grant to us splendour and strength,
O Master of our home.
A bounteous bestower of plenty is the God
Who is Master of our herds.
Grant to us splendour and strength,
O Lord and Master.
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Muslim Prayer (Islam)
O Thou that art as the soul in the body of the universe,
Thou art our soul, and art ever fleeing from us.
Thou breathest music into life’s flute:
Life envies death, when death is for Thy sake.
Once more bring comfort to our sad hearts:
Once more dwell in our breasts:
Once more demand from us the sacrifice of name and fame.
Strengthen our weak love,
We are often complaining of destiny.
Thou art of great price and we have nought.
Hide not Thy fair face from the empty-handed.
Give us the sleepless eye and the passionate heart.
MohammudAqbal (1875-1938)
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Secular Poem
In Blackwater Woods By Mary Oliver
Look, the trees are turning their own bodies into pillars of light, are giving off the rich fragrance of cinnamon and fulfilment The long tapers of cattails are bursting and floating away over the blue shoulders of the ponds, and every pond, no matter what it’s name is, is nameless now.
Every year everything I have ever learned in my lifetime
Leads back to this: the fires, and the black river of loss whose other side is salvation, whose meaning none of us will ever know.
To live in this world you must be able to do three things: to love what is mortal; to hold it against your bones knowing your own life depends on it; and, when the time comes to let it go
to let it go.
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