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2012 Marek Vácha. Advance directives previously expressed wishes of patients. René Descartes.
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2012 Marek Vácha Advancedirectives previously expressed wishes of patients
René Descartes • ...that we could be free of an infinitude of maladies both of body and mind, and even also possibly of the infirmities of age, if we had sufficient knowledge of their causes, and of all remedies with which nature has provided us. • René Descrates: Discourse on Method, Part VI.)
Reasons for opening the discussion Formerly active life diaseases and dying death Now active life disease and dying death Because of medicine we have today a little bit longer the active life, but proportionally much longer the time of diseases, staying in the hospitals and dying
FourPrinciples of Medical Ethics • Nonmaleficence • Beneficence • Autonomy • Justice
Autonomy • people have the same moral authority over their future affairs that they have over their current affairs - it is simply extended forward
Autonomy • Patient has the right, as a competent adult, to refuse any proposed treatment, even if doing so may mean that he/she will become sicker or evendie. • If a competent person is sick, our legal tradition recognizes that he must want to be made well; the state cannot force him to have an operation or take his medication.
Advance Care Planning • = process whereby a patient, in consultation with healthcare providers, family members, and important others, makes decisions about his or her future healthcare • „Every human being of adult years and sound mind has the right to determine what shall be done with his own body.“ (Benjamin Cardozzo´s statement, 1914)
USA • state laws allow individuals to complete advance directives documents and to name healthcare decision makers • federal law requires all patients admitted to hospital to be notified of this right • most european countries have followed suit with provisions for advance care planning
the scope of surrogate´s powers can be as broad or marrow as the person executingathepower of attorneylikes • a health care power of attorney is often combined with a living will • in general the surrogate decision maker must decide according to the substitutedjudgment principle • to decide as the patient would if he or she were now competent
Surrogatesappointed without a power of attorney • many states in USA have "family consent" statutes, which specify a relative or relatives to act as surrogate decision maker. Although theses surrogates are not appointed under advance directives, their role is much the same as surrogates appointed under a health care power of attorney.
Health Care Proxy • in association with passage of the Patient Self-DeterminationAct (1990) laws has been passed that enableindividuals to designate the person they wish to make healthcaredecisions for them once they lose decision-makingcapacity • in addition, lawspertaining to informedconsent have givenfamilymembers the right to make decisions on behalf of incapacitated patients • an alternative to family-based substitute decision making is using the courts, such as assigning a court-appointedguardian. This mechanismexists in both USA and Canada
Decision MakersUSA • if no healthcare agent is authorized and available, the practitioner must make a reasonableinquiry as to the availability of other possible surrogates according to the order of priority • legalguardian • spouse • adult child • parent • sibling • grandparent • grandchild • close friend • (Veterans Health Administration, 2003)
Decision Makers • when patients are asked who they would want to represent them, the majority opt for their own family members • (Singer, P.A., Viens, A.M., (eds.) (2008) The Cambridge Textbook of Bioethics. Cambridge University Press, p.60)
Patientsatincreased risk forlosingdecision-makingcapacity • These high risk situationinclude: • earlydementia • historyofstroke • healthconditionsthatpredispose to a futurestroke (e.g. uncontrolledhypertension) • healthconditionsthatpredispose to delirium (e.g. frailty, advancedage) • terminalillness • recurrent severe psychiatricillnesses (e.g. severe dementia, mania, psychosis) • familieswithconflicts • socialisolation (e.g. no familymembersorclosefriends)
Health Care Proxy • = a substitute decision maker • the criteria on which the decision should be based are: • the specific wishes previously expressed by the patient • if specific wishes are not known, the patient´s known values and beliefs • if neither specific wishes or values and beliefs are known, the patient´s best interests
Substituted judgement and best interests Substituted judgements liwing will, advanced directives without an advance directive, a proxy may then refer to the patient´s values, both implicit and explicit, regarding worldview (including religious beliefs), lifestyle, and health care. Best interests in many cases, a proxy may not have any information a bout a paataient´s values (infant, young children, mentally disabled adults) health is preferable to ilness, and life is preferable to death
Order of Priority • current express preferences of a competent patient (informedconsent) • past express preferences (living will) • what the patient would now want if he/she were competent (substitutedjudgment) • bestinterest Davis, J.K., (2009) Precedent Autonomy and End-of-Life Care. in Steinbock, B., (ed) The Oxford Handbook of Bioethics. Oxford University Press, Oxford.
Problems • advance care planning has not been as successful as proponents would wish • some patients change their views as time passes • others request life-prolonging interventions that subsequently prove to be unrealistic • substitute decision makers are not always sure that a patient´s situation is equivalent to that described in an advance directive
Problems • people cannot foresee their futures well enough to make informed decision in advance
A twenty-eight-year-old man decided to terminate chronic renal dialysis because of his restricted lifestyle and the burdens on his family. He had diabetes, was legally blind and could not walk because of progressive neuropathy. His wife and physician agreed to provide medication to relieve his pain and further agreed not to put him back on dialysis even if he requested this action under the influence of pain or other bodily changes. (Increased amounts of urea in the blood which restlt from kidney failure, can sometimes lead to altered mental states, for example). While dying in the hospital, the patient awoke complaining of pain and asked to be put back on dialysis. The patient´s wife and physician decided to act on the patient´s earlier request not to intervence, and he died four hours later. Beauchamp, T.L., Childress, J.F., (2009) Principles of Biomedical Ethics. 6th ed. Oxford University Press, Oxford and New York, p. 110
65-year-old woman • In one of the earliest case, a 65-year-old woman was admitted for surgery to correct a cloggedartery. She knew this could lia to a disablingstroke, and her living will said: • "If there is no reasonableexpectation of my recovery from physical or mentaldisability, I request that I be allowed to die and not be keptalive by artificialmeans or heroicmeasures. I do not fear death itself as much as the indignities of deterioration, dependence, and hopeless pain"
65-year-old woman • The day beforesurgery, she told her surgeon she wanted the living will followed if she had a stroke, and said "she felt life was worthliving only if she could be healthy and independent." • Soon after surgery, a stroke left her with a profoundneurological deficit and a few days later she developed a breathingproblems. • Her doctors had to decide whether to follow her living will and let her die. • Davis, J.K., (2009) Precedent Autonomy and End-of-Life Care. in Steinbock, B., (ed) The Oxford Handbook of Bioethics. Oxford University Press, Oxford.
World Medical Association Declaration on the Rights of the Patient Adopted by the 34th World Medical Assembly, Lisbon, Portugal,1981 • The unconscious patient If the patient is unconscious or otherwise unable to express his/her will, informed consent must be obtained whenever possible, from a legally entitled representative. • If a legally entitled representative is not available, but a medical intervention is urgently needed, consent of the patient may be presumed, unless it is obvious and beyond any doubt on the basis of the patient's previous firm expression or conviction that he/she would refuse consent to the intervention in that situation. • However, physicians should always try to save the life of a patient unconscious due to a suicide attempt.
PersistentVegetative State (PVS) • = a clinical condition of unawareness of self and environment in which the patient breathes spontaneously, has a stable circulation, and shows cycles of eye closure and opening which may simulate sleep and waking • the vegetative state has to have endured for at least one month in order for it to be considered persistent The Multi-Society Task Force on PVS, "Medical Aspects of the Persistent Vegetative State," New England Journal of Medicine 330 (1994)
PVS • the patient is not comatose; she is awake but unaware • clinically, PVS suggests the irreversible loss of all neocortical function • generally, brain stem functionsremain, and patient can breathe on their own • they do not match the criteria of brain death, inasmuch as they have • elicitablereflexes, • spontaneiousrespiratins, and • reaction to externalstimuli
PVS • three months in cases of PVS following cardiac arrest • six months for patients under forty with head injuries • twelve months for patients under twenty-five with head injuries
PVS • No coma • Can breathe normally • Preserved brain stem reflexes • Preserved hypothalamic function (body temperature, vascular tone, ..) • Rich motor activity (unpurposeful, inconsistent, smile, cry, moan, grunt, scream) • No “respirator brain” • Can be partially or totally reversible • When there is no recovery after a specified period(3–12 months, depending on aetiology) the state can be declaredpermanent
Life • biological life • is not uniquely human; it is the life we share with the trees, bugs, deersetc. • život v darwinovském smyslu, který sdílíme s opicemi a rostlinami • biographical life • weddings, events, relationships • ...what makes us uniquely human • můj osobní život s tragédiemi a radostmi, popsaný v básních, krásné literatuře, moje osobní tápání, lásky a nenávisti...
Differences in brain metabolism measured in brain death and the vegetative state, compared with healthy subjects. Patients in brain death show an ‘empty-skull sign’, clearly different from what is seen in vegetative patients, in whom brain metabolism is massively and globally decreased (to 40-50% of normal values) but not absent.
Life • With current teachnology we can often sustain life in a biological sense, but we cannot restore individuals to an awareness of themselves or others. • In many cases, an individual may survive for years without gaining consciousness Born - Departed - At peace
Nancy Cruzanright to die? At first glance, the Court´s decision in Cruzan disappointed proponents of a right to die because it upheld the decision of the Missouri Supreme CourtL it held that Missouri´s interest in safeguarding life allowed it to demand clear and convincing evidence that the incompetent person truly wished to withdrraw from treatment, evidence that in Nancy´s case was lacking. Nevertheless, the reasoning of the majority decision was widely interpreted as conceding such a right to die for a competent person.
Nancy Cruzanright to die? Chief Justice William Rehnquist reasoned that "the principle that a competent person has a constitutionally protected liberty interest in refusing unwanted medical treatment" may be inferred from our previous decisions.
Karen Ann Quinlan(1954 – 1985) • This case established the precedent that life-sustaining treatment could be removed if the care were futile (no hope for ecovery) and if there were proxy consent. • Quinlan shocked her family and physicians, however, by breathing on her own after the ventilator was shut off.
Donald Dax Cowart In 1973, Donald Cowart was critically injured in a propane gas explosion, that caused severe burns over sixty-five percent of his body. For more than a year, he objected to the painful treatments that he was receiving. Cowart was physically incapable of ending his own life, since his hands had been severely damaged in the accident, but he made repeated verbal requests that he be allowed to die, or that someone help him end his own life.
Donald Dax Cowart Despite his protestation, his doctors and his mother continued to provide treatment, including a number of paonful skin graft surgeries. Cowart survived the ordeal and is still alive today, but insists that hed should have been allowed to die. (Pierce, J., Randels, G., (2010) Contemporary Bioethics. A Reader With Cases. Oxford University Press, Oxford and New York, p. 115)
TerrySchiavo03/12/1963 – 31/03/2005 • Born December 3, 1963 • Deaperted this Earth February 25, 1990 • At Peace March, 31, 2005
EluanaEnglaro1972 - 2009 • in a persistent vegetative state since being injured in a car crash in 1992. • In July 2008, a court in Milan ruled that doctors had proved Ms Englaro's coma was irreversible. • It also accepted that, before the accident, she had expressed a preference for dying over being kept alive artificially.
EluanaEnglaro, the comatose woman at the centre of a euthanasia debate that divided Italy and sparked a constitutional crisis, died on Feb 9 2009 at the age of 38, four days after doctors began to remove her life support. • She had been in a vegetative state for 17 years after a car accident. Ms Englaro’s father had been fighting for a decade for a dignified end to his daughter’s life in accordance with what he and her friends have testified were her own wishes. At his request, doctors at a clinic in Udine stopped feeding.
