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  • Palliative Care ‘Live as if you were to die tomorrow, learn as if you were to live forever’. MAHATMA GANDHI 1869 – 1948.
  • 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. Definition: (WHO)
  • Goals….. • Provides relief from pain and other distressing symptoms. • Affirms life and regards dying as a normal process. • Intends neither to hasten or postpone death • Integrates psychological and spiritual aspects of care. • Offers a support system to help patients live as actively as possible until death. • Offers a support system to help the family cope during the patients illness and in their own bereavement • Uses a team approach to address the needs of patients and their families, including bereavement counselling, if needed • Will enhance QOL, and may also positively influence the course of illness
  • Palliative Care… cont’d • "You matter because you are you, and you matter to the end of your life. We will do all we can, not only to help you die peacefully, but also to live until you die.” • Dame Cicely Saunders, nurse, physician and writer, and founder of hospice movement (1918 - 2005).
  • The elephant in the room.. • The only certainty in our lives is that we will die. • We don’t tend to talk about it or plan for it. • Death can be a positive experience, both for the dying individual and their loved ones. • https://www.youtube.com/watch?v=j8tMTTwW6Iw
  • Death… • Almost everything – all external expectations, all pride, all fear of embarrassment or failure – these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart." • – Steve Jobs, American Entrepreneur, Apple co- Founder (b.1955).
  • Reflections on Dying.. • "I am not afraid of death, I just don't want to be there when it happens.” • Woody Allen, American screenwriter, film director, actor, comedian, writer, musician and playwright (b.1935). • "When you learn how to die, you learn how to live.” • Morrie Schwartz, American educator and writer (1916 - 1995).
  • What does dying look like? • Different for everyone. • Option of settings: home, hospital, hospice (if planned). • Not always painful. • Not always something that happens to older people. • Not always when expected. • https://www.youtube.com/watch? v=HZL88Xl0-DI
  • Different strokes for different folks.. • Pushing up daisies. • Buying the farm. • Kicking the bucket. • Checking out. • Dropping the body. • Passing away. • Knocking on heaven’s door. • Popping your clogs.
  • Common conditions in Palliative Care • Cancer (solid tumors) • Haematological conditions • Neurodegenerative conditions e.g. MND • Dementia • ‘End stage’ respiratory conditions • ‘End stage’ liver failure • ‘End stage’ renal failure • ‘End stage’ heart failure • ‘End stage’ dementia • Old age/frailty • Mitochondrial disorders e.g. MELA’s
  • Common Symptoms • Pain • Nausea +/- Vomiting • Constipation • Fatigue • Insomnia • Weight Loss • Anxiety • Breathlessness • Poor appetite
  • Symptom Management • Symptoms often multi- dimensional and multi- factorial. • Each individual/family will have preferences around symptom management. • Client/patient autonomy very important.
  • Pain…. • Spiritual, physical, emotional, social influences. • Concept of ‘total pain’ in palliative care. • Medication is often ‘not enough’: important to consider the ‘whole person’. • Pain is what the individual ‘says it is’. • Will have different triggers therefore different relief applies. • Is often complex in palliative care. • Can be multiple types/mechanisms of pain in one individual.
  • Poor appetite and weight loss • Natural part of many disease processes. • Encourage intake for enjoyment/pleasure vs weight gain. • If possible avoid the scales. • Social implications: (body image, cultural implications).
  • ‘Phases of Care’ • Stable • Unstable • Deteriorating • Terminal • Bereavement
  • Impact of receiving ‘the news’ Nature in which news is delivered will often influence manner in which it is received. Reactions individualized and complex. Emotional, physical, social and spiritual circumstances will influence ‘the journey’.
  • Physical experience of ‘dying’ • Fatigue. • Increasing frailty. • Diminishing performance status. • May require assistance with ‘ADL’s. • Increasing reliance on others. • Symptoms of disease process. • May require equipment/aids.
  • Equipment options.. • Wheelie Walker. • Shower chair/stool. • Electric Recliner/Day Bed. • Wheel Chair. • Walking Stick. • Commode. • Hospital Bed +/- Pressure relieving mattress.
  • Support for Home Care • Carer/Carers. • Family (in whatever form).. • GP. • Friends. • Specialist Pall. Care team. • Volunteers. • SW, Counselors.
  • Social experience of ‘dying’ • Alterations in role in family, friendships, workplace. • Adapting to change in ‘life expectancy’ or ‘assumptive world’. • Concern for loved ones. • Financial concerns. • Unfinished projects.
  • Implications for social needs.. • ‘Bucket List’. • ‘Death Plan’ • Letters/gifts/wishes for family and friends. • Photo journals. • Video messages. • Funeral preparation. • ‘Living wakes’. • ‘Advanced Health Directive’. • ‘Enduring Power of Attorney’. • ‘Will’. • Financial Supports avail. via Centrelink etc. • Superannuation ‘Terminal illness benefit’.
  • Spiritual Experience • Potential for spiritual pain, or comfort. • Religious beliefs and practices may present hope or trigger ‘crisis of faith. • Diagnosis may enhance search for ‘deeper meaning’ or ‘legacy’.
  • Emotional Experience • Shock, denial, anger, bargaining, acceptance (stage theory): Kubler- Ross. https://www.youtube.com/watch?v=G_Z3lmidmrY • Depression +/- Anxiety. • No fixed pattern of emotion. • For some it’s a relief. • Individualized.
  • Spiritual Care: ‘A model of needs’ • SITUATIONAL • Purpose • Hope • Meaning & Affirmation • Mutuality • Connectedness • Social Presence • (Kellehear 2000)
  • Religious • Religious Reconciliation • Divine Forgiveness • Religious Rites/Sacraments • Visits by Clergy/pastoral care • Religious Literature/images • Discussion about religious matters • (Kellehear 2000)
  • Moral & Biographical • Peace & Reconciliation • Reunion with Others • Prayer • Moral & Social Analysis • Forgiveness • Closure • https://www.youtube.com/watch?v=Nih9EU5Q 1Oc&list=PL3409BC8580B401DA • (Kellehear 2000)
  • ‘How to BE with dying…TIPS’ • Dying people are Living people. • It is their journey. • People tend to ‘die the way that they have lived’. • Words are often not the answer. • Compassionate Presence/Listening.
  • CONTINUED… • Speak from the Heart. • Listen from the Heart. • Speak Concisely. • Speak ‘Spontaneously’. (Halifax 2008)
  • Self Care.. • Be mindful of the ‘shadow side of caregiving’ (Halifax 2008) • (The Martyr, the Professor, the Hero, the Parent). • Nurture yourself.. Think of 3 things you can do to be kind to yourself. • ‘You cannot give from an empty cup’.
  • Self Care… continued. • Debriefing. • Taking ‘time out’. • Spending time with friends and family. • Counseling if helpful. • Meditation/prayer/yoga /exercise/swimming/m usic.
  • QUESTIONS…. • https://www.youtube.com/watch?v= -NpHYXw2Ruw • Thank you for inviting us to share with you…