SPIRITUALITY IN PALLIATIVE CARE : a clinician's perspective

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SPIRITUALITY IN PALLIATIVE CARE : a clinician's perspective VIENNA AUSTRIA MAY 2009

PALLIATIVE CARE A philosophy of care that aims to alleviate suffering.

ITS CONTEXT PERSON Physical Dimension Social Dimension Psychological Dimension Spiritual Dimension Staff Dimension

SPIRITUALITY The spirit is so rich in shades, with many and varied facets, so vivid in its manifestations, that it makes it necessary to approach its study with the ingenuity of someone who is about to enter a completely new and unknown world.

SPIRITUALITY Manifestations Spiritual needs Spiritual distress/spiritual pain Spiritual pain Symptoms Treatment

SPIRITUALITY. MANIFESTATIONS Spirit as power Spirit as essence Spirit as immortality Spirit as conscience Spirit as religion

MANIFESTATIONS. Spirit as power.

MANIFESTATIONS. Spirit as power. Establishes survival instinct, incredibly powerful to death door. Together with fear - instinctive attempts- to escape death, it conforms the foundation of the fighting spirit whose appearance is a powerful determinant of that moment when the individual begins to confront the real situation. Survival instinct can be strong; some people might even take over from their dying relatives to make sure they don t lose the battle.

spirit as power

MANIFESTATIONS. Spirit as essence

MANIFESTATIONS. Spirit as essence Non changing centre within each one of us; stays with us all our lives, giving meaning until the end. It takes time to find; can be a painful process. Forgotten, covered or previously discarded values come to the surface, requiring the last drop of energy to be able to deal with their demands. Peace and serenity are likely to flourish as a reward. The struggle will then come to an end and it will have been worth the effort.

spirit as essence As a person approaches his deepest self, and we, observers, share in it, a sense of the numinous emerges: it is as if we were stepping on sacred ground, silence surrounds us. It renders us uncomfortable, nervous. It is at this moment we try to go back on our own steps in an attempt to avoid the feeling of lack of control as we feel we are about to take what is not ours.

MANIFESTATIONS. Spirit and immortality We unite spirit and immortality in the context of something which is coming to an end: life.

MANIFESTATIONS. Spirit and immortality To be reminded of our mortality can act as a powerful catalytic concerning the mending of relationships; relationships with others, ourselves and God. When confronting our own mortality, we confront life after life (or not).

spirit and immortality The person continues to live, after death, in the memory of those who loved her; relatives and friends. Others leave behind a tangible legacy. Mozart s Requiem was inspired by his preoccupation with his own impending death.

MANIFESTATIONS. Spirit and conscience. It can happen that is only at this late point in a life coming to its end- that one becomes aware of the presence of the spirit. As a concept, it falls in the sphere of the spiritual, which contains the elements of our body, feelings and our mind.

spirituality and religion The spirit is the principle which unifies and transcends all the other aspects of the person: body, mind, culture, race and so on. Spirituality makes reference to meaning, depth and values. As an universal term, it is equally used by believers, agnostics and atheists.

spirituality and religion Religion, on its part, is a particular expression of given modes of spirituality and pre-existent canons of beliefs; it is not universal.

SPIRITUALITY Manifestations Spiritual needs Spiritual distress/spiritual pain Spiritual pain Symptoms Treatment

SPIRITUAL NEEDS Spiritual needs and -in the extreme- spiritual distress are a phenomenon that lends itself to being studied like any other process. Trying to measure it would be like trying to measure sadness by the volume of tears shed. To deepen in this ground we go into the world of the qualitative and the subjective; intuition and feelings.

SPIRITUAL NEEDS It is in this that each person s individuality shines with its own light. Each person is a world in herself, growing each day until personal full growth is completed at the time of death.

IDENTIFYING SPIRITUAL NEEDS AND DISTRESS Remember their existence. Can show themselves through the body, the mind, feelings or the spirit itself because of the close relationship among them. Look for them with BIFOCAL VISION. Symptoms must be sought in this context 1. Literal level: the apparent one, how the symptom presents itself 2. Metaphoric or symbolic level: where that particular symptom deep meaning lies

SPIRITUALITY Manifestations Spiritual needs Spiritual distress/ spiritual pain Spiritual pain Symptoms Treatment

SPIRITUAL PAIN Very difficult to define It might be beyond definition as it operates at a level where logic is not enough Familiar concept in oriental traditions Synonymous with suffering?

SPIRITUALITY Manifestations Spiritual needs Spiritual distress Spiritual pain Symptoms Treatment

PSYCHOLOGICAL SYMPTOMS Fear, Anger, Depression (Intuitive reactions to threat of bodily harm). Shadow of Guilt and Remorse. Relationships between I - YOU- IT I - YOU: PERSON to PERSON; I - It

SPIRITUAL SYMPTOMS Rarely present themselves isolated, they can - in some cases -, make the dying process into a terrifying experience. They are very varied and can present in a very obvious way or in disguise.

SPIRITUAL SYMPTOMS The dying person loses his role, health and life. As a consequence of this, can suffer existential frustration and nothing seems to make any sense. That person can not allow herself special wishes, plans and hopes to go beyond the very next day. Wishing, planning and hoping are now futile.

SPIRITUAL SYMPTOMS Lack of meaning Anguish Duality. People feel separated from everything and everybody, profoundly lonely and isolated, as if unable to recognize themselves. Inner darkness. Tripping over blindly during the last few days of life; feelings and senses are too deep for any light to shine in such dark passage.

WHAT MAKES US SUFFER Poor pain and other symptom control Fear Misunderstanding Loneliness/ Isolation Loss of familiar structures, roles, obligations and identities. Perception of being a burden to others Uncertainty Loss of hope

SUFFERING To cure sometimes, to alleviate always French Proverb. XV century

SPIRITUALITY Manifestations Spiritual needs Spiritual distress Spiritual pain Symptoms Treatment

SPIRITUAL PAIN HAS MANIFESTED ITSELF AND WILL NOT BE RESOLVED WITH A TABLET

TREATING SPIRITUAL PAIN

TREATING SPIRITUAL PAIN Intuition, inner knowledge. A certainty that comes from within, recognizes others depth and thus, their suffering. Presence. Feeling another person truly present is unforgettable. A safe space is created for both. Process. Doing, participating in the story our patient is writing not as mere spectators Language. Talking to a good listener becomes the passport to the world of lifelong feelings Touch. Transmits multiple messages Symbolism. Useful to link to past events.

SYMBOLISM

ALLEVIATING SUFFERING BEING. LISTENING. UNDERSTANDING. SEARCHING. RESPECTING. COMMUNICATING. INFORMING. ACOMPANYING.

TO ALL TO THE END You matter because you are you; you will matter until the day you die. We are here not only to help you die but to help you live until you die Cicely Saunders