PALLIATIE BIJ HET LEVENSEINDE Dr. Jo Lisaerde Postuniversitaire Farmacologische Dag zaterdag 16 april 2005

Historiek 1899: aspirine 1950: heelkunde 1930: antibiotica 1980: technologie

Historiek 1899: aspirine 1950: heelkunde 1930: antibiotica 1980: technologie 1842: Dames de Calvaire 1967: St Christopher’s Hospice 1974: “PALLIATIVE CARE” 1879: Sisters of Charity Ivan Illich: “medicalisation” 1977: eerste PC - team

Definitie van palliatieve zorg (WHO) Palliatieve zorg is de actieve totaalzorg voor patiënten van wie de ziekte niet meer reageert op genezende behandeling. Behandeling van pijn en andere symptomen, ondersteuning bij psychologische en sociale problemen en aandacht voor spirituele aspecten vanuit interdisciplinair samenwerkingsmodel. Het doel van palliatieve zorg is het bereiken van de best mogelijke kwaliteit van leven, zowel voor de patiënt als diens naasten.

Begrip “TOTALE PIJN” (C. Saunders) FYSIEK EMOTIONEEL ziekte soort pijn angst woede kwaliteit hulpverlening depressie beschikbare technieken cultureel PATIENT persoonlijkheid pijndrempel opvoeding ervaringen SPIRITUEEL SOCIAAL schuld zin/onzin gezin - familie - werk visie op pijn/lijden materiële toestand wereld/godsbeeld plaats van sterven

Definitie van palliatieve zorg (WHO) 2003 Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, trough 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

Definitie van palliatieve zorg (WHO) 2003 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 the psychological and spiritual aspects of patient 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;

Definitie van palliatieve zorg (WHO) 2003 uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Wanneer start palliatieve zorg? D O curatief palliatief

Wanneer start palliatieve zorg? D O curatief palliatief ROUW - - - - - - - - - - - - ------------ comfort

Epicurus “ The art of living well and dying well are one “ “ Death is one of the attributes you were created with; death is part of you. Your life’s continual task is to build your death “ Montaigne

“A GOOD DEATH” To accept that death is coming, and to understand what can be expected; To be able to retain control of what happens; To be afforded dignity and privacy; To have control over pain relief and other symptom control; To have choice and control over where death occurs (at home or elsewhere); To have access to information and expertise of whatever kind is necessary; Richard Smith BMJ 2000;320;129-130

“A GOOD DEATH” To have access to any spiritual or emotional support desired; To have access to hospice care in any location, not only in hospital; To have control over who else is present and shares the end; To be able to issue advance directives which ensure wishes are respected; To have time to say goodbye, and control over the aspects of timing; To be able to die when it is time to go, and not to have life prolonged pointlessly. Richard Smith BMJ 2000;320;129-130

WILSONBEKWAME PATIENT Wilsverklaring: anticiperend verzoek (coma) Andere wilsbeschikkingen: soms problematisch! Vertrouwenspersoon - vertegenwoordiger Naasten Team Arts

HANDELINGEN ROND HET LEVENSEINDE Streven naar maximale overlevingsduur Vermijden therapeutische hardnekkigheid Staken levensverlengende behandeling Niet starten levensverlengende behandeling Maximale palliatie Terminale sedatie Levensbeëindiging zonder verzoek Hulp bij zelfdoding euthanasie

DE TOEKOMST: WAT KAN BETER? Nog veel patiënten sterven met pijn Begrip totale pijn Aandacht voor andere comfortproblemen Autonomie van de patiënt Adequate waarheidsmededeling Advanced directives Eenheid patiënt-naasten Vocht en voeding Therapie-afbouw Daad met dubbel gevolg

‘You do not fail if you fail to cure ‘You do not fail if you fail to cure. You only fail if you fail to care’