DR. LIM KENG HUATMBBS (NSW, AUST)kenghlim@yahoo.com

HOLISTIC HOSPICE CARE THE MEASURE OF A HOSPICE PROGRAM IS IN THE QUALITY OF THE SPIRITUAL CARE THAT IT PROVIDES.DAME CECILY SAUNDER, ST. CHRISTOPHERS HOSPICE, LONDON

1. PHYSICAL2. PSYCHO-EMOTIONAL3.SOCIAL-FAMILIAL4.SPIRITUAL (this is least explored, and an often ignored dimension. WHY?)

WHAT BOTHERS YOU MOST?(American Journal Of Hospice & Palliative Medicine, vol25, 2008)Physical Distress 44%Emotional, Spiritual, Existential problems 16%Relationship problems 15%Concerns about dying and Death 15%(patients are more concern about pain and symptoms relief than in death anxiety problem)

OPTIMAL HEALTHPhysical: Health within Illness, EmbodimentEmotional: Emotional Crisis, Stress managementIntellectual: Edu, CareerSocial: RelateSpiritual: Love, Hope, Charity

BIOLOGICAL BODY AND LIVED BODY (Maurice Merleau Ponty)HEALTH AND ILLNESS ARE NOT BINARY OPPOSITES; THEY PERMEATEIMPACT OF ILLNESS RE-ORIETATION TO A CHANGING WORLD AND A CHANGING SELFRELATIONSHIP TO OUR BODY AND TO WORLD WE LIVE IN(Illness: The Cry Of the Flesh by Havi Carel)

ANNALS OF INTERNAL MEDICINE 1997 EDITORIALPHYSICIANS LACKED COMMUNICATION SKILLS, ESP. IN DEALING WITH DYING PATIENTS.DOCTORS SEE DEATH AS FAILURE OR DEFEATMEDICAL MODEL AGAINST PERSONAL, INDIVIDUAL MODELINCREASING TECHNICALIZATION & OFTEN OVER AGGRESSIVE TREATMENT OF DYINGDECREASING PERSONAL TOUCH

SEVEN CRITICAL JUNCTIONS IN THE CAREER OF A DYING PATIENT: 1965 GLASER & STRAUSSTERMINAL ILLNESS: less than 6 monthsMAKE PREPARATION FOR PATIENTS DEATH: death seem predictable and imminentNOTHING MORE TO DO TO PREVENT DEATH (Nothing for curative;More for palliative)FINAL DESCENT (Dying trajectories slow/fast)Last HOURS (24 48 H)DEATH WATCHDEATH: irreversible circulation, respiration, consciousness)

Pattern of spiritual distress at the end of life in patients with lung cancer

Difficulty swallowing Disorientation Loss of bowel and bladder control. Breathing changes Gurgling or rattling sounds. Cold extremities Sleepiness. (http://www.extension.org/pages/9042/loss-and-grief-signs-of-death)

SPIRITUAL POTENTIALIT HAS TO BE AWAKENED, TRAINED AND PRACTICED, JUST AS TRAINING IS NEEDED TO DEVELOPED THE POTENTIAL TO DO WELL IN SPORTS, MAKE MUSIC, SING, OR DANCE. BUT EVEN THEN NOT ALL PEOPLE MAKE GOOD SINGERS OR DANCERS.NOT EVERYBODY IS EQUALLY SPIRITUALLY GIFTED(Ursula King: The Search for Spirituality: Our Global Quest for a Spiritual Life, 2008)

SPIRITUAL DIMENSIONS OF DYING IN PLURALIST SOCIETIESPalliative care is about helping people die well, but do we know how to die well?----------------------------------Friedrich Nietzche:He who has a why to live, can bear almost any how.Dr. Ira Byock:Dying well: expresses the sense of living and a sense of process.

ACCESS TO INFORMATION/ EXPERTISECHOICE & CONTROL (when? Home? Who, Pain & Symptom, Spiritual & Psycho-emotional, Hospice, Advanced Directive, Prolongation or Terminate, PERMISSION)DIGNITY, PRIVACY, MEANING OF LIFE, FORGIVENESS & RECONCILIATION

SPIRITUALITY & RELIGIONIS IT THE SAME?EVERYONE HAS A SPIRITUAL DIMENSION, BUT MAY NOT BE EXPRESSED THROUGH A RELIGION, FORMAL OR INFORMAL, PHILOSOPHICAL OR OTHERWISESPIRITUALITY MOVES BEYOUND SCIENCE AND BEYOND INSTITUITIONAL RELIGIOUS AUTHORITYWHO PROVIDES SUCH CARE? CERTIFIED CHAPLAINS, NURSES, DOCTORS, SOCIAL WORKERS, VOLUNTEERS

IS THE SEPARATION AN OPPORTUNITY, BURDEN, OR CONFUSION?(PALLIATIVE MEDICINE 2002, WALTER)ORGANIZATION PROBLEM: Who provides the Care? SENSITIVITY IN MULTI-FAITH COMMUNITIES/COUNTRIES

Four BROAD DISCOURCES OF SPIRITUALITY: emphasis in Meaning Finding

INADEQUATE TRAINING FOR COUNSELLORS

RELIGION: RELIGARE (TO BIND); RELEGARE (TO COMTEMPLATE). RELIGION ; BIND TO A SET OF RULES; OR TO READ THE BOOK INORDER TO COMTEMPLATE HIS/HER BINDINGSPIRITUAL: SPIRITUS (LATIN: BREATH OF LIFE; ANIMATING FORCE OR ESSENCE (A UNIVERSAL DEFINITION DIFFICULT:SOCIO-LINGUISTIC DESCRIPTION

SPIRITUALITY & WELL BEING( British MHA Care Group 2000)SPIRITUAL NEEDS OF PEOPLE:1.The need to receive and give love2.The need to sustain hope3.The need to believe faith/trust4.The need for creativity skills/talent5.The need for peace6*.The need for purpose and meaning in living, suffering and illnesses, and death7*. Spirituality of the senses - cultivate the senses in new ways at time of diminishment of physical faculties

CONCEPTUAL AREAS OF SPIRITUALITYSPIRITUALITYTRANSCENDENCESOULPSYCHEPHILOSOPHYTHEOLOGYPERSONHOODSACREDSOCIOLOGYPSYCHOLOGYHUMANISM

CONCEPTUAL AREAS OF RELIGIONRELIGIONDOCTRINERITUALBELIEVEORGANIZATIONPHILOSOPHYMORALITY & ETHICSEXPERINENTIALIDENTITY & BELONGINGSOCIOLOGYFRATERNITYARTISTICS

FOUR TYPES OF DISCOURSES

ITS FOUR WAYS TO CONSTRUCT MEANINGNOT A TYPOLOGY OF PEOPLE BUT OF DISCOURSE; AN PERSON COULD HAVE MORE THAN ONE DISCOURSESPIRITUAL OR BIOGRAPHICAL PAIN (My life has not added up in the way I would have wanted, and impending mortality means this is now too late to change.MOL IN DEATH IS KEY PART OF HOSPICE MOVEMENT STANCE AGAINST EUTHANASIASPIRITUAL MIDWIFERY

FOUR TYPES OF DISCOURSESBELIEVE IN AFTER LIFEBELONG TOBELIEF SYSTEMYESNOYESFORMAL RELIGION(All Major religions)EXPLICIT SECULARISMHUMANISMATHEISMNOFOLK RELIGION(REUNION INHEAVEN, CONTACTTHROUGH MEDIUMSPIRITUALITY (NEW AGE, FEMINIST)IMPLICIT SECULARISM(WHEN YOU ARE DEAD,YOU ARE DEAD)SPIRITUALITY

MEANING & CHOICE IN DYINGWhat oxygen is to the lungs, such is Hope to the MOL BrunnerILLNESS TRAJECTORY : PATIENT/FAMILY AS PRINCIPAL DECISION MAKERREALISTIC HOPE AGAINST FALSE HOPELEGACYSHORTER BETTER QUALITY AGAINST LONG SUFFERING

EVEN OBJECTS MAY BE MEANINGFUL TO THE DYING

RITUALS & POWERMARKERS OF MEANINGSFAMILIAL OBLIGATIONS SOCIAL TIES, BOND, CONNECTIONSSELF OF SELF LOCATED IN POSSESSIONSCOMMENMORATIVE(Thus leaving the familiar home environment while dying may be very traumatic)

SPIRITUAL NEEDS & SPIRITUAL CARE OF THE DYING

SN: ARE THE NEEDS TO SEARCH FOR MEANING, PURPOSE, OR VALUES IN LIVING, EITHER VIA A RELIGION, OR SOME OTHER BELIEF SYSTEM.SC: IS RECOGNISING, ATTENDING & RESPONDING TO SUCH NEEDS AND EXPECTATIONS. It involves understanding of suffering, compassion, love, listening, encouragement, counseling.

(Palliative Medicine 2004, pages 39-45, by Scott A Murray, some modifications)

Unmet spiritual need cycle may result in increased demand and service use

CONCEPTUAL FRAMEWORK FOR SPIRITUAL CARESPIRITUAL ORIENTATION

SPIRITUAL ISSUES

SPIRITUAL NEEDS HOMOSTASISSPIRITUAL PAIN

SPIRITUAL CARESPIRITUAL ORIENTATION

SPIRITUAL ISSUES

SPIRITUAL NEEDS HOMOSTASISSPIRITUAL PAIN

SPIRITUAL CARE

WHAT ARE YOUR GOALS FOR SPIRITUAL CARE?ALLEVIATE DEATH ANXIETY &COPING WITH LONELINESSPROMOTE MEANING, PERSONAL WORTH AND HOPEINCREASE QUALITY OF LIFEPROVIDE COMFORT AND SOCIAL SUPPORTRELIGIOUS OR SPIRITUAL CONCERNSHELPS TO REALISE CLIENTS BUCKET LIST

CUES TO IDENTIFYING SPIRITUAL NEEDS & SPIRITUAL WELL BEINGSIGNS OF S.NEXPRESSING FRUSTRATION, FEAR, DOUBT,DESPAIRFEELING LIFE NOT WORTHWHILEFEELING ISOLATED & UNSUPPORTEDFEELING USELESSLACKING IN CONFIDENCERELATIONSHIP PROBLEMSFEELING LOSING CONTROL ASKING: WHERE DO I FIT IN? WHAT HAVE I DONE TO DESERVE THIS?

SIGNS OF S.W-BINNER PEACE & HARMONY

HAVING HOPE,GOALS & AMBITIONSSOCIAL LIFE & PLACE IN COMMUNITY RETAINEDUNIQUENESS & INDI., DIGNITYFEELING VALUECOPING & SHARING EMOTIONSABILITY TO COMMUNICATE WITH TRUTH & HONESTYABILITY TO PRACTICE CHOICE OF RELIGION; FINDING MEANING

SPIRITUAL SCREENINGIMPROVING THE QUALITY OF SPIRITUAL CARE AS A DIMENSION OF PALLIATIVE CARE: CONSENSUS CONFERENCE JOURNAL OF PALLIATIVE MEDICINE, 2009

SPIRITUAL ASSESSMENT(American Family Physician, 2001)GENERAL PREREQUISITES:SPIRITUAL SELF CARE & UNDERSTANDINGGOOD PHYSICIAN-PATIENT RAPPORTAPPROPRIATE TIMING OF DISCUSSSIONFORMAL ASSESSMENT

SPIRITUAL ASSESSMENT:HOPE QUESTIONH: SOURCE OF HOPE:MEANING, CONFORT, STRENGTH,PEACE,LOVE & CONNECTIONO: ORIGINAL RELIGIONP: PERSONAL SPIRITUALITY & PRACTICEE: EFFECT ON MEDICAL CARE AT END-OF-LIFE ISSUES(spirituality & medical practice by Gowri Anandarajah, American Family Physician, Jan. 2001)

HOPE APPROACH TO SPIRITUAL ASSESSMENT (AFP,2001)Examples of Questions for the HOPE Approach to Spiritual Assessment H: Sources of hope, meaning, comfort, strength, peace, love and connectionWe have been discussing your support systems. I was wondering, what is there in your life that gives you internal support?What are your sources of hope, strength, comfort and peace?What do you hold on to during difficult times?What sustains you and keeps you going?For some people, their religious or spiritual beliefs act as a source of comfort and strength in dealing with life's ups and downs; is this true for you? If the answer is "Yes," go on to O and P questions. If the answer is "No," consider asking: Was it ever? If the answer is "Yes," ask: What changed?O: Organized religionDo you consider yourself part of an organized religion?How important is this to you?What aspects of your religion are helpful and not so helpful to you?Are you part of a religious or spiritual community? Does it help you? How?P: Personal spirituality/practicesDo you have personal spiritual beliefs that are independent of organized religion? What are they?Do you believe in God? What kind of relationship do you have with God? What aspects of your spirituality or spiritual practices do you find most helpful to you personally? (e.g., prayer, meditation, reading scripture, attending religious services, listening to music, hiking, communing with nature)E: Effects on medical care and end-of-life issuesHas being sick (or your current situation) affected your ability to do the things that usually help you spiritually? (Or affected your relationship with God?)As a doctor, is there anything that I can do to help you access the resources that usually help you?Are you worried about any conflicts between your beliefs and your medical situation/care/decisions?Would it be helpful for you to speak to a clinical chaplain/community spiritual leader?Are there any specific practices or restrictions I should know about in providing your medical care? (e.g., dietary restrictions, use of blood products)If the patient is dying: How do your beliefs affect the kind of medical care you would like me to provide over the next few days/weeks/months?

BECKERS PARADOX & DUALITYBRAIN/MIND COULD NOT COGNISE ITS OWN END OR NULLITY, SEEK TRANSCENDENCE/AFTER LIFEDEATH ANXIETY & DENIALTHIS PARADOX UNDERLIES THE SPIRITUAL NEEDS OF THE DYING & LIVING SEARCHING FOR MOL & DEATH, MEANINGFUL LIVING, FINDING HOPE BEYOND THE GRAVE

CHANGES, CHOICES AND MEANING OF LIVING & DYING

CHANGESMEANINGSPHYSICAL & MENTALRELATIONSHIPMONEYHEALTHRELIGION&BELIEFENVIRONMENTHABITS (THOUGTHS,EMOTION)REALITY&TRUTHCHOICES

TECHNOLOGY

POLITICSSUFFERING,MISHAPS

PSYCHO-SPIRITUAL TRANSFORMATION OF DYING PROCESSDENIAL ANGER BARGAINING DEPRESSION ACCEPTANCE DENIAL ANGER BARGAINING DEPRESSION ACCEPTIONCHAOSSURRENDERTRANSCENDENCEALIENATION ANXIETY DESPAIRLETTING GO DREAD OF ENGULFMENTTHE NEARING DEATH EXPERIENCE

MANAGEMENTTEACH RELAXATION TECHNIQUEOFFER PRESENCE, UNDERSTANDING ACCEPTANCE & COMPASSIONEMPOWERING INTERNAL & EXTERNAL RESOURCES (RELIGION/FAITH, MEDITATION, TAI QI EXERCISES, MUSIC, PAINTING, POETRY)PROMOTE SELF GROWTH OR INSIGHT INSTEAD OF SPECIFIC PROBLEM SOLVINGUSE SPIRITUALITY TO MODIFY TREATMENT PLAN

MAYBE We dance from this elegant place discarding our vulnerable bodies like old work clothes at the end of the dayMAYBE essence enters the air flying like monarchs in migration passed roses and river older than wood wizardsMAYBE meaning and magic stand up from the landscape like summer lightning and for one holy momentALL questions have answers, all journeys a home all living the roundness and warmth of a stone clutched tight in the handOR MAYBE like four-year-old we drop everything and simply run forward dazzled again! ROBERTA DE KAY

THE LAST FLICKERING FLAMESoon to strip off my working clothes;In nakedness, the freedom flows.What to wear for my retirement?Not to trap in re-dressing similar garment.In nudity, I reflect myself in lifes mirror;I look at an aging body with horror.The burnt candle flickers .Blow it off, if the fire is without fervor.

A Reply to Flickering Light:Its easy to light up another candle;Become a devil to live with an angel.Even with the flickering flame;Entitle to some fun with end-of-life game.The reflection is indeed true;Enjoy some sweet dessert before final adieu.

BLESSBless: do not blow ;Holiness even when the glow is low.The body is withering away;You pray and still feel betray.The fire will be gone;Memories and identities become icon. Learn about dying well;Doubt and fear: do not dwell.Grow with the process;Give love until the final bless.

EXIT TURN: RIGHT TO HEAVEN LEFT TO HELL

CONCLUSION

"The five secrets you must discover before you die."by John Izzo

http://www.bkconnection.com/thefivesecrets/index.html1.BE TRUE TO YOURSELF2.LEAVE NO REGRETS3.BECOME LOVE4.LIVE THE MOMENT5.GIVE MORE THAN YOU TAKE