2012Marek Vácha

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

Formerlyactive life diaseases and dying

death

Nowactive 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

Four Principles 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 even die.

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

Living Will

the scope of surrogate´s powers can be as broad or marrow as the person executing athe power of attorney likes

a health care power of attorney is often combined with a living will

in general the surrogate decision maker must decide according to the substituted judgment principle to decide as the patient would if he or she

were now competent

Surrogates appointed 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-Determination Act (1990) laws has been passed that enable individuals to designate the person they wish to make healthcare decisions for them once they lose decision-making capacity

in addition, laws pertaining to informed consent have given family members 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-appointed guardian. This mechanism exists in both USA and Canada

Decision MakersUSA

if no healthcare agent is authorized and available, the practitioner must make a reasonable inquiry as to the availability of other possible surrogates according to the order of priority legal guardian 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)

Patients at increased risk for losing decision-making capacity

These high risk situation include: early dementia history of stroke health conditions that predispose to a future stroke

(e.g. uncontrolled hypertension) health conditions that predispose to delirium (e.g.

frailty, advanced age) terminal illness recurrent severe psychiatric illnesses (e.g. severe

dementia, mania, psychosis) families with conflicts social isolation (e.g. no family members or close

friends)

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

1. current express preferences of a competent patient (informed consent)

2. past express preferences (living will)

3. what the patient would now want if he/she were competent (substituted judgment)

4. best interestDavis, 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 clogged artery. She knew this could lia to a disabling stroke, and her living will said:

"If there is no reasonable expectation of my recovery from physical or mental disability, I request that I be allowed to die and not be kept alive by artificial means or heroic measures. I do not fear death itself as much as the indignities of deterioration, dependence, and hopeless pain"

65-year-old woman

The day before surgery, she told her surgeon she wanted the living will followed if she had a stroke, and said "she felt life was worth living only if she could be healthy and independent."

Soon after surgery, a stroke left her with a profound neurological deficit and a few days later she developed a breathing problems.

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.

Persistent Vegetative 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 functions remain, and patient can breathe on their own

they do not match the criteria of brain death, inasmuch as they have elicitable reflexes, spontaneious respiratins, and reaction to external stimuli

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 declared permanent

Life

biological life is not uniquely human; it is the life we share with

the trees, bugs, deers etc. 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 Cruzan

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)

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)

Baby K.(1992 – 1995)

Terry Schiavo3/12 1963 – 31/03 2005

Terry Schiavo03/12/1963 – 31/03/2005

Born December 3, 1963 Deaperted this Earth

February 25, 1990 At Peace March, 31,

2005

Eluana Englaro1972 - 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.

Eluana Englaro1972 - 2009

Eluana Englaro, 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.

Eluana Englaro1972 - 2009

Italy's Prime Minister Silvio Berlusconi drafted a decree to prevent doctors from letting her die, but President Giorgio Napolitano refused to sign it.

Italy does not allow euthanasia. Patients have a right to refuse treatment, but they are not allowed to give advance directions on the treatment they wish to receive if they become unconscious.

Euthanasia„Dutch definition of euthanasia“

=the intentional termination of the life of a patient at his request by someone other than the patient

Protecting human rights and dignity by taking into account previously expressed wishes of patients25 January 2012

5.  This resolution is not intended to deal with the issues of euthanasia or assisted suicide. Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged benefit, must always be prohibited. This resolution thus limits itself to the question of advance directives, living wills and continuing powers of attorney.

http://www.assembly.coe.int/Mainf.asp?link=/Documents/AdoptedText/ta12/ERES1859.htm

Trace of Thought Is Found in ‘Vegetative’ Patient

Dobrovolník či pacient má myslet na pohybovou aktivitu (hraní tenisu), když chce říci „ano“ a má se uvolnit nebo myslet na prostorovou aktivitu (procházení se po ulicích), chce-li říci „ne“

Trace of Thought Is Found in ‘Vegetative’ Patient A two-way channel to an immobilized, severely

brain-injured person also opens up a world of ethical challenges.

“If you ask a patient whether he or she wants to live or die, and the answer is die, would you be convinced that that answer was sufficient?” said Dr. Joseph J. Fins, chief of the medical ethics division at Weill Cornell Medical College in New York. “We don’t know that.

Their answer might be ‘Yes, but’ — and we haven’t given them the opportunity to say the ‘but.’

http://www.nytimes.com/2010/02/04/health/04brain.html?ref=health

Futile Treatment

quantitative futility a treatment is capable of producing a result,

but extremely unlikely to do so recovery is "impossible" or "virtually

impossible"

qualitative futility the problem lies not in the low probabilities,

but when there are questions about the value of the end result ("lacking in purpose")

"Good"

how much longer life is an unqualified good for an individual?

how much more life is good for us as individuals, other things being equal? the simple answer is that no limit should be set. life is good, death is bad

some, of course, eschew any desire for longer life they profess still more modest claim:

not adding years to life, but life to years no increased life span, but only increased health

The problem of boredom and tedium

if the life span were increased - say by twenty years - would the pleasures of life increase proportionately? would professional tennis players really enjoy

playing 25 percent more games of tennis? would the Don Juans of our world feel better

for having seduced 1 250 women rather than 1000?

The problem of boredom and tediumLeon Kass

To know and to feel that one goes around only once, and that the deadline is not out of sight, is for many people the necessary slur to the pursuit of somenting worthwhile. To number our days is the condition for making them count and for treasuring and appreciating all that life brings

The problem of boredom and tediumLeon Kass

Homer´s immortals, for all their eternal beauty and youthfulness, live shallow and rather frivolous lives, their passions only transiently engaged, in first this and then that.

they live as spectators of the mortals, who by comparison have depth, aspiration, genuine feeling, and hence a real centre to their lives.

Kass, L.R., (1983) The Case for Mortality. The American Scholar 52, no.2:173-191 in Pierce, J., Randels, G., (2010) Contemporary Bioethics. Oxford University Press, NY, Oxford. p. 147-154)

The problem of boredom and tediumLeon Kass

Homer´s immortals, for all their eternal beauty and youthfulness, live shallow and rather frivolous lives, their passions only transiently engaged, in first this and then that.

they live as spectators of the mortals, who by comparison have depth, aspiration, genuine feeling, and hence a real centre to their lives.

Kass, L.R., (1983) The Case for Mortality. The American Scholar 52, no.2:173-191 in Pierce, J., Randels, G., (2010) Contemporary Bioethics. Oxford University Press, NY, Oxford. p. 147-154)

The problem of boredom and tediumLeon Kass

It is probably no accident that it is a generation whose intelligentsia proclaim the meaninglessness of life that embarks on its indefinite prologation and that seeks to cure the emptiness of life by extending it.