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Health Care Ethics

Ethics is the study of right and wrong.

Most cases of ethical decision making are simple, because it is obvious what is right.  (This does not mean that we always do what is right.)

We are more interested in cases where the answers are not obvious.
These cases happen when there is public controversy over what is right, or when there are pros and cons on both sides.

There are many elements to ethical decision making.

 Be clear about what the problem is.

 Consider what options are available.
  (This requires creative thinking.)

 Weigh the consequences of each option.

Consult your conscience, Pray, Consult others (friends, family, clergy, ethicists), your horoscope

 Think it through:
  what ethical principles are involved?
  can we decide which principles are most important?

 Come to a decision.

 Reflect on your decision.

Note that even if we are all rational, we might still disagree with each other about what to do.  Then we need to consider who has the right to make the decision.




Ethical Principles.

There are many ethical principles.
 e.g. a woman has a right to control what happens to her body
  we should respect life
  we should do no harm to others
  we should help others
  there should be justice in the distribution of resources

Some principles are more general than others.  So some principles are special cases of more general ones.  For instance, the right to control what happens to one's body is a special case of the principle of autonomy, the right to control one's own life.

Hébert identifies 3 main general principles:
 Autonomy, Beneficence, and Justice.
There may be other principles which are not special cases of these, e.g. respecting life.

We can generally all agree to general principles, such as autonomy and beneficence.  The disagreement comes over cases where the principles conflict, e.g., in abortion right, autonomy conflicts with beneficence.

If a principle covers a case, it creates a duty.
For example, it a person wishes to do something you disagree with, you have a duty to respect her autonomy.

However, duties can be divided into two kinds:
 "Prima facie" and "Absolute"

A prima facie duty is something you should do if there are no stronger reasons for doing something different.  Prima facie duties can be trumped by other moral considerations.

An absolute duty is something you should do no matter what.  Nothing can trump an absolute duty.  (There is some dispute about whether any absolute duties exist.)

Rights and Duties
If a person has a right to X, then she must get X (other things being equal.)
If a person has a duty to do Y, then she must do Y (other things being equal).

Not all right and wrong can be expressed in terms of rights or duties.

But some good actions are not duties.  Someone can go above and beyond the call of duty.  I can be kind to someone I don't like even though I may have no moral duty to do so.

The fact that a person has a right to do Y does not mean that Y is good.  Giving people the rights to decide on their own can mean giving them the right to make mistakes and do wrong.  For example, we might give people the right to refuse life saving treatment even if we think that it is wrong to refuse such treatment.

We should distinguish between law and morality.  Moral rights and duties are different from legal rights and duties.  For example, you might have a moral duty to keep a promise to a friend, but such promises are rarely enforceable by law.


Autonomy

Autonomy is the ability to control one's own life.  In order to do this, one needs information, powers of reasoning (mental competence) and ability to express one's desires.  (Ability to move one's body and resources to do what one wants are useful, but maybe not essential for autonomy).

Examples of autonomy:
 The right to refuse treatment
 Advance directives
 Appointing proxies
 Getting informed consent to procedures
 

Problem Cases:
 Parents refusing treatment for their children
  Can parents control their children's lives?  What if the children disagree with parents and want the treatment?

 Teenagers and children refusing treatment (without their parents' agreement).

 Mentally ill patients refusing treatment.
  Not all people with mental disorders are incompetent (e.g. people with anxiety, phobias, or sometimes, severe mental illnesses when the treatment at issue is not related to their illness, and even when it is related.)

Competency:
 Does the patient understand the decision being made?  Can the patient understand the consequences of her actions?
 
 No universal standard for competency

 Standards for competency should depend on decision being made

 Even severely mentally ill patients can refuse treatment unless they are a danger to themselves or others.

Beneficence and Non-Maleficence

What do Health Care Professional (HCP) Codes of Ethics actually say?

What does "Do No Harm" Mean?

 HCPs cause pain and injury all the time: e.g., injections, surgery, drug side effects

"Do No Harm" means

What counts as good care? What benefits are medical and which are non-medical?

Choosing the Best Criteria for Determining When Death Has Occurred

Traditional Criteria of Death (Whole Body): Physicians used signs of life such as a feeling for a pulse, listening for breathing, holding a mirror before the nose to test for condensation, and looking to see if the pupils are fixed.

In the 18th and 19th centuries , there were macabre tales of "corpses" reviving during funerals and exhumed skeletons found to have clawed at coffin lids. In 1882 an undertaker names Kirchbaum attached periscopes to coffins so that a person who woke up after being buried might signal for help.

The brain has 3 general anatomic/functional divisions:

the cerebrum ("higher brain"), with its outer shell called the cortex.

The cerebrum has primary control of consciousness, thought, memory and feeling.

the cerebellum, which coordinates voluntary movements and maintains bodily equilibrium.

the brainstem ("lower brain").

The brainstem has control of spontaneous vegetative functions such as swallowing, yawning, and sleep-wake cycles. It controls respiration, which maintains the correct levels of carbon dioxide and oxygen.

The Development of Medical Technology: Life-support machines, such as those supporting heart-lung operation, were developed in 1950s and 1960s.

An artificial respirator can be used to compensate for the inability of the thoracic muscles to fill the lungs with air.

The heart can pump blood without external control from the brain. An intact heart can continue to beat despite loss of brain function. This can continue for only a limited time (2-10 days for adults, longer for babies) when the brain has entirely ceased functioning. At present, no machine can take place of the heart except for a limited time and in limited circumstances.

When brainstem functions remain, but the major components of the cortex are irreversibly destroyed, the patient is usually in what is called a persistent vegetative state. Such persons can exhibit spontaneous involuntary movements such as yawns or facial grimaces, their eyes may be open and they may be capable of breathing without assistance. But they have no awareness of their environment. They can survive months or years without a respirator.

In 1959, the concept of Brain Death was first described in the medical literature.

In 1968, an ad hoc committee at Harvard Medical School developed the Harvard criteria of brain death, requiring loss of virtually all brain activity. Complete certainty of irreversibility.

In 1981, the President's Commission for the Study of Ethical Problems wrote a report on criteria for death. The Commission regards only whole brain non-functioning as meeting the criteria of death.

Commission: The use of respirators takes away the significance of respiration and circulation for the diagnosis of death.

Higher Brain criteria: consciousness, thought and feeling are primarily located in the cerebrum, especially the neocortex. It is possible to lose these functions while the rest of the brain keeps on working. The higher brain definition regards this as compatible with death.

Higher Brain criteria are supported by the "Personhood argument": Personhood consists in the complex of activities (or in the capacities to engage in them) such as thinking, reasoning, feeling, and human intercourse. Those who advocate definitions of death related to the loss of these characteristics often link them to higher brain definitions. Personhood ends with the irreversible loss of these functions.

Accepting the Higher Brain criterion might have the implication that severely senile patients and the severely retarded were no longer persons. It has the implication that Karen Quinlan, who has been removed from the respirator that supported her breathing for 5 years, and breathes independently and spontaneously, is just as dead as a corpse. The Commission rejected this conclusion and the implication that such patients could be buried or treated as dead persons.

A further problem with this criterion is that current neurophysiology and medical technique cannot translate it into a clear measurable standard. It is not known where consciousness and cognition reside. There seem to be substantial interconnections with the brainstem. Even when it is known what parts of the brain are responsible for aspects of consciousness, their cessation cannot be assessed with certainty.


The Case of Karen Quinlan

In 1975, Karen Quinlan was 21. She had recently left home against her adoptive parent's wishes, and moved in with 2 male roommates. She was a free spirit, wild and reckless, taking illegal drugs. Heroine, methadone, cocaine were alleged.

On April 15, she stopped breathing after a few drinks at a bar. She was resuscitated. A bottle of Valium was found in her purse, and she had been dieting or maybe fasting. The combination of this with alcohol stopped her breathing. She had irreversible brain damage. She was on a respirator to keep her breathing, and prevent aspiration of vomit into her lungs.

When the respirator forced air into her lungs she would sometimes choke and sit bold upright with her arms flung outward and her eyes open and wild, appearing to her parents as if she were in pain. She was put on a more powerful respirator, the MA-1, which filled her lungs more, and required a tracheotomy, to which Karen's mother agreed.

Karen had slow wave EEG, not flat. She would sometimes seem to laugh or cry. Her eyes moved in different random directions. She was not brain dead according to NJ law. She was in a PVS. Over the next 5 months her muscles contracted and became rigid. Her weight dropped drastically. She was nourished by an intravenous feeding tube, and then a nasogastric feeding tube, after 5 months. Her head writhed and she often vomited.

Karen had twice said to her family that if anything terrible happened to her, she did not want to be kept alive as a vegetable on machines. The family decided to remove the respirator. The simplest thing to do would have been to obtain guardianship of Karen and have her moved to another hospital, where the respirator could have been disconnected. Instead their lawyer, 30 years old and inexperienced, Paul Armstrong, went immediately to the issue of disconnecting the respirator. He based his argument on the right to privacy.

The NJ Supreme Court heard the case in November 1975 and decided in January 1976, after two months of deliberation. They found in favor of the Quinlans, on the ground of the right to privacy. They appointed her father, Joseph Quinlan, as her guardian, to make the medical decision she would have made.

Karen Quinlan was weaned from the respirator by May 1976. She did not die until June 13, 1986.


The Case of Nancy Cruzan and the Right to Die

On January 11, 1983, Nancy, age 24, lost control of her car in Missouri, was thrown 35 feet, and landed face down in a water-filled ditch. Paramedics arrived and found her heart stopped. She was resuscitated, but had been anoxic for maybe 15 minutes. She was in a PVS.

She remained in this state for 7 years, costing the state of Missouri $112,000 a year. She was kept alive by a feeding tube: she could breath on her own.

Parents Joe and Joyce Cruzan sought legal permission to disconnect the feeding tube. The Missouri Supreme Court held that the state had an interest in preserving human life, regardless of the quality of life. Before support could be withdrawn from an incompetent patient, there must be clear and convincing evidence of the patient's wishes.

3 levels of evidence in court:

  1. preponderance of evidence,
  2. clear and convincing, and
  3. beyond a reasonable doubt.
All the evidence that Nancy would have refused treatment was vague and unreliable recollections of parents and friends.

This went to the US Supreme Court in 1990. The Court found that the Constitution gives Americans a "liberty interest" to be free of unwanted medical support. The Court also found that withdrawing a feeding tube was no different from withdrawing any other kind of life-sustaining medical support.

This was the first decision by the U.S. Supreme Court to explicitly recognize the rights of dying patients.

Then friends came forward, who had known her under her married name, Nancy Davis, and they said she had said she would refuse treatment. This was taken to be clear and convincing evidence. Her feeding tube was removed on December 14, 1990, and she died.


Children and Death

Children have some understanding and misunderstanding of death.

Often their misunderstanding is due to parents finding it difficult to talk to their children about death. Often parents will use metaphors rather than direct language, and this confuses children.

Parents often misinterpret their children's understanding of death, because they find it difficult to talk to their children about it.

Childhood experiences of death can affect how they later think about death as adults.

Many children's games are concerned with death.

Babies and Infants have no or very little understanding.
 

The Progress in Children's Understanding of Death

Age 3-5 Death as temporary, sleep, separation, living in a different place. Very curious about death. May think it cruel of God to take a person or pet, or for us to bury or burn them.
Age 5-9 Death is the complete loss of all life functions, universal and irreversible. Often think of Death as a person who will come for us, who we try to escape from.
9- adult Death as inevitable. Start to theorize about religion, the nature of death, and life after death. Death as an abstraction, darkness, nothingness, transition.
 
 

Helping Children with Bereavement

1. Develop and maintain an open communication pattern with children.

2. Give children the opportunity to choose attending the funeral.

3. Ask what the child is thinking and feeling; don't assume that we know what the death means to him or her.

4. Encourage the expression of feeling.

5. Provide convincing reassurance that there will always be someone to love and look after the child.

6. Children at special risk may need professional counseling.

Dying Children

In the past parents and doctors often did not tell terminally ill and seriously ill children that their life was at risk.

But children generally know that something is seriously wrong. They are made uncomfortable about it through adults' discomfort with it. It may lead them to think that adults don't really care.

Levels of knowledge of illness, without being told by adults:

1. "It" was a serious illness.

2. Names and side effects of drugs.

3. Purposes of treatments and procedures.

4. The disease was a series of relapses and remissions. Medicines don't always work.

5. The disease was terminal. Death is approaching, and suffering will end.

Not telling a child about the illness does not reduce child's anxiety. Children want to know what is happening to them. Home or hospice care is generally psychologically easier than a hospital stay.

Children, like adults, can use denial as a way of coping with their emotions. Dying young children can experience separation anxiety. Older children can experience mutilation anxiety from medical treatments. Terminally ill adolescents are often bitter and depressed.

Dying children know that those around them are unhappy about their illness, and will sometimes try to protect those people from further pain, by hiding symptoms or worries.

What are the rights of sick children?

Many treatments are painful and distressing, and children don't like them. Hospital life can be lonely and upsetting.

Do they have a right to be free as possible from pain?

Do children have the right to refuse treatment?

Should standards of competency of children be different from that of adults? Should they be assumed competent unless proven incompetent?


The Human Genome Project and Biotechnology

1953: Watson and Crick describe the molecular structure of the genetic material: the double helix, and the pairing of the two sets of nucleic acids, A to T and G to C.

1956: Tijo and Levan found that normal human beings have 46 chromosomes

1968: Caspersson and Zech invent a process for identifying chromosomes.

1971: Indian microbiologist, Ananda Chakrabarty at GE, applied to the US Patents and Trademarks Office for a patent on a genetically engineered organism designed to consume oil spills on oceans. PTO refused. Chakrabarty and GE appealed and won. PTO appealed to US Supreme Court.

1973: First human gene mapping workshop held in New Haven, CT.

Cohen and Boyer take DNA from two unrelated organisms that could not mate in nature, and recombine them to make a third organism.

1980: US Supreme Court, by a 5-4 vote, grant a patent on the first genetically engineered life form.

1979-89 various genetic diseases and disorders mapped, including sickle cell anemia, Huntington disease, muscular dystrophy, and cystic fibrosis.

1983: Ralph Binster at U Penn Vetinary School inserted human growth hormone genes into mouse embryos. They grew twice as fast and twice as big as any other mouse. These supermice passed the growth hormone gene onto their offspring.

1984: Scientists fused together embryo cells from a goat and a sheep, and placed the fused embryo into a surrogate animal who gave birth to a sheep-goat.

1988: US Dept of Energy and National Institutes of Health join up to create the Human Genome Project. NIH concentrates on gene mapping, DOE on gene sequencing.

1997: Ian Wilmut announces birth of a sheep called Dolly, the first cloned mammal.

Keith Campbell reported the birth of a sheep called Polly, cloned from enhanced fetal sheep cells, who contains a human gene.

The biotech company Nextran is testing the efficacy of using transgenic pig livers outside the body to help treat patients with acute liver failure. CEO Marvin Miller estimates the commercial value of these transgenic pig livers to be as high as $18,000 each.

Boston company Organogenesis can take a few cells from a human foreskin and manufacture four acres of skin.

Mooney and Martin are working on growing women's breasts in the lab, which could be implanted into a woman's chest.

Dr. Anthony Atala, director of tissue engineering at Harvard Medical School, is growing a human bladder in a glass jar.

Eugenics

The term 'eugenics' was invented by Francis Galton, Charles Darwin's cousin.

"I wish very much that the wrong people could be prevented entirely from breeding; and when the evil nature of these people is sufficiently flagrant, this should be done. Criminals should be sterilized and feeble-minded persons forbidden to leave offspring behind them... the emphasis should be laid on getting desirable people to breed."

Letter from Theodore Roosevelt, 1913.

Eugenics was supported by many intellectuals in the first decades of the century. It was partly a response to the massive immigration wave, especially the Irish, the Jews, and the Italians, which increased the number of city slums and unionizing.

In 1921, in Good Housekeeping, Calvin Coolidge wrote that biological laws tell us that certain divergent peoples will not mix or blend. He concluded that the Nordics propagate themselves successfully, "while with other races, the outcome shows deterioration on both sides."

Genetic Screening

In 1992, in London, a woman's egg was fertilized with her husband's sperm, in vitro, but before implantation in her womb, it was screened for cystic fibrosis.

Genetic Therapy

By mid-1980s, the possibility of carrying out effective somatic cell gene therapy on human beings became a realistic goal. This will not affect the future children of the person.

First human somatic gene therapy was in 1990; Dr. French Anderson and his team at NIH treated a young girl suffering from ADA deficiency, "bubble-boy disease." White blood cells were taken from her body and the gene that codes for adenosine deaminase was introduced into the cells, which were then reintroduced back into her body using a modified animal retrovirus as the vehicle of transmission. The experiment was controversial, since some other geneticists said that it was flawed and was not proof that the genetic therapy had been effective.

Gene therapy, involving gametes, fertilized eggs, or early embryos, leads to germ-line transformation. The transgene becomes heritably transmitted to future generations. It will probably become common in 15-20 years. It is this sort of therapy that leads to the greatest worries.

Three sorts of ethical concern about germ-line therapy:

The "slippery slope" argument, that it will lead to "positive eugenics", the systematic improvement or perfection of the human genome.

By eliminating some deleterious genes we will lose some important genetic variation that may have a future survival value to the species.

This gene therapy may cause even more serious maladies in future generations.

We can try to draw a distinction between curing a malady (negative gene therapy) and enhancing a normal person (positive gene therapy). There is controversy over whether there is an objective way to draw this distinction. There may be some clear cases on each side of the dividing line, but there is a large gray area with many controversial cases.

Is shortness a genetic malady? Is dwarfism? Color-blindness? A genetic tendency towards mild obesity?

Can we give an objective general definition of a malady? This is much debated. Can we give an objective scientific definition of normal health? Or is the definition arbitrary, or dependent on cultural or subjective factors?

Some say yes. E.g. Charles Culver: "A person has a malady if and only if he has a condition, other than his rational beliefs and desires, such that he is suffering or at increased risk of suffering a harm or evil (death, pain, disability, loss of freedom or opportunity, loss of pleasure) in the absence of a distinct sustaining cause."

Culver admits that this definition is a little vague, but does not see this as a major problem, and says it is unavoidable for any definition.

Others point to such definitions and say that terms like "rational," "disability," "freedom," and "pleasure" are very subjective.

Whether or not there is an objective definition, we can also debate whether positive genetic therapy is wrong.

Compare germ-line therapy to the old eugenics. It would be voluntarily chosen by prospective parents. Could it ever be mandated by law? Even if not enforced by law, could there be social pressures which would make people feel that it was their responsibility to get genetic therapy?

Edward Berger says that germ-line therapy "would only be justified in cases of severe maladies, where there is no less radical way of achieving the same goal. Among the class of less radical procedures would be somatic cell gene therapy or any other nongenetic therapy" such as genetic screening. Once genetic screening is sophisticated enough, we can always use it instead of germ-line therapy to eliminate defects.

However, germ-line therapy would still be necessary for enhancing an embryo.