Pat Anderson
May 18, 1991
DePaul University
Law & Values-Spring 91
Midterm Exam
Speech – Self Evaluation
WW-7 Competence
Introduction
Hi, I’m Pat Anderson, I’m going to talk to you about the right to die; I am very prejudiced about this issue. I am intimately involved in the issues of patient rights as a part of my daily work as an intensive care nurse.
Archie …
Now, try to picture Archie Bunker sitting in his favorite chair watching the ball game on TV; it’s Sunday afternoon, and there is a beer sitting next to him and a pizza in his lap. Edith comes in the door after volunteering at the local nursing home. She brings a dining room chair next to Archie and tries to discuss whether or not he wants to be on a respirator or have a feeding tube if he gets really sick. Can you feel him cringe inside? Can’t you imagine what Archie would say? “Je …sus, … Edith …
Well, Archie isn’t the only one who doesn’t want to face these issues. The legal and medical professions are full of Archie Bunkers on this subject. We act as if death were optional. Ours is a death-denying society.
The Laws …
Our right to die is protected by the First Amendment freedom of religion, the Fourth Amendment through the right to privacy, and the Fourteenth Amendment through the equal protection clause.
However, the legal system, and its lawyers, cannot escape the fact that before they are lawyers, they are human. They too deny death and would like to avoid thinking about it. The conflicting precedence that has been established within the judicial system illustrates this very humanness. I will use some cases to show what I mean:
In Lane vs. Candura, a confused 77-year-old widow was allowed to refuse amputation, despite having a distorted sense of time, a thought pattern that wandered and was at times, even combative. The appeals court found that she understood the consequence of refusing. She did not choose to live as an invalid or in a nursing home and did not fear death, but actually welcomed it since the death of her husband. The court did not find it had a compelling interest in dictating her quality or length of life. Courts in Arizona, CA, Florida, Maine, Massachusetts, and Rhode Island have come to the same decisions in similar cases.
This case illustrates that even a patient that is not totally medically competent CAN be seen as LEGALLY competent as long as she understands that without treatment she will die.
On the other hand, a woman who was a Jehovah’s Witness was forced to receive a blood transfusion after suffering a bleeding ulcer. Because she had children the court said the state had an interest in keeping her alive. She was a competent adult and knew there was a possibility that she would die without the blood. What kind of logic allows one person to refuse amputation (who is confused) but not allow a competent person to refuse a blood transfusion?
Suspect Classifications …
Aren’t we, by the conflicting nature of these cases, setting up suspect classifications. What would have happened if Mrs. Candura were 21, would the courts have found differently, would her age have changed state’s interest in preserving her life – thus setting up an age class? Will we someday mandate that people under, oh say 65, must use whatever technology is around at the time? Is the right to die doled out according to age?
Can the courts reasonably say that all parents must use all available technology simply because they are parents? Will the courts eventually mandate that all parents must take all chemotherapy, radiation etc that could be prescribed – till oh say their children are out of college? Who sets up the limits of this doling out of rights?
Another question is whether I, not being a Jehovah’s Witness, could refuse a blood transfusion because I feared Aids or Hepatitis? And would the courts have allowed Mrs. Candura to refuse a blood or the amputation (you may need blood during an amputation) if she were a Jehovah’s Witness?
As a nurse, I am aware that there are options and several different ways to treat a specific illness; I have refused treatments knowing that there are alternative methods to deal with the problem. But many patients don’t know about options – doctors don’t always give patients options, so will the courts give doctors “God reinforcement” by mandating that certain types of people must follow their doctor’s advise – even though 3 different doctors might prescribe 3 different treatments for the same problem? The actual laws do not mandate any classifications.
Another set of cases that illustrate nonconsistency within the judiciary are the Quinlan and the Cruzan cases. The New Jersey Supreme Court allowed Karen Quinlan to be removed from the respirator; this was the first time the right-to-privacy law was used in withdrawing life support. And the first case proposes that doctors and families make these decisions intimate decisions. The court ruled that its interest in the preservation of life weakened the individual’s right to privacy. They allowed “substituted judgment” to be used. They did not demand “clear and convincing evidence” that she would not want to live as a vegetable. And of course, they didn’t know she would go on living at the time.
The U.S. Supreme Court would not allow Nancy Cruzan to have tube feedings removed without “clear and convincing evidence”, despite the “substituted judgment” of caring parents. We can assume that if Nancy had been competent or had had durable power of attorney, they would have upheld the request because the court did not deny her right to refuse. The court passed the decision, into the lap of the states. (These issues DO involve fundamental rights that should not be allowed to vary from state to state.) The court left open the possibility that someone in New Jersey with aids may be allowed to remove life support, but not to his previous significant other in New York. Is this not another classification? Think about it – New Jerseyans and New Yorkers. Should the state you live in have relevance to your right to die?
Why was one case required to use the “clear and convincing evidence” standard and the other was not? How can we say a respirator can be removed and not a feeding tube – when they are equally sustaining a vital life function – breathing or eating? These contradictory rulings serve as examples of how the emotionality of these issues can make for bad law.
The judicial system can also get around facing these issues with court continuances; the patient may not live long enough to get beyond the continuances. The ones who end up suffering the high cost emotionally and financially are the patients and families.
We have a hard time dealing with death, until the judicial system can learn to accept death as a part of NORMAL life it will not be able to be truly objective in assuring us our rights.
There is no law mandating the use of all the technology available. The laws were meant to protect our rights, even if we make an “unwise” decision. Of what value are laws that give you rights – only if you go along with the medical system?
Ethics …
To lawyers, this issue involves abstract concepts, but to me as a critical care nurse, it is not abstract at all. I see the torture that results from technology; I feel their anguish, I hear them beg for relief from suffering and I must be intimately involved in inflicting technology upon them – my heart is not “in it” if theirs isn’t. There’s an advertisement for nursing that says, Nursing: the human side if high tech. Most of the time I don’t perceive my work as humane at all because I so often see patients’ rights violated – I hate being a part of it.
There is paranoia about the law in health care. Health professionals are making treatment choices to avoid litigation instead of being directed by the actual needs of the patient. What’s ethically appropriate, goes along with the patient’s wishes, and is humane – serves as the best defense – ethically or legally. Defensive medicine makes the law primary and puts ethics second.
Technology is so easy to turn on. As a health professional, it becomes almost reflexive to DO something. Well, today we have so much to do SOMETHING with. When you are faced with an emergency and your adrenaline is pumping, using the technology can become just something to do while you’re shitting in your pants over the emergency, no matter how experienced, emergencies can be challenging and make you doubt whether or not you can deal with it. We get so indoctrinated in saving a life due to our education – no one stops to think about what the consequences will be of the technology.
Most health professionals were not taught to ask, “Am I saving a life or am I abusing a patient”? Even if there are some of us who do ask, it is not practiced. If you as a health professional, say you feel the situation is abusive you are seen as an outcast – I know that feeling! Surely our goal cannot be to prolong suffering, to experiment at the patient’s expense, to make money or to support the ego of doctors.
Since the Cruzan decision, nurses may now have to change the focus of counseling families and patients about whether or not to start treatment since it may require “clear and convincing evidence” to remove it if the patient becomes incompetent or has a change in condition making him terminal.
Maybe this is actually for the best. Maybe we should be forced to let our adrenaline ebb before we rush in and “save lives”. Perhaps we should do more thinking before we make patients hostages to our technology. Do we sentence people to die a tortuous death instead of a comfortable one because their decisions to refuse don’t go along with our moral code?
A critically ill patient is struggling with the critical illness, should he be forced to struggle within the legal and medical system for the fundamental rights that the constitution promised him?
Patients at the MOST vulnerable times in their lives should not have to be concerned that some state will come along and claim an interest in their continued suffering.
Proof, proof that you would not want to live in a vegetative state. Proof, that if you are going to die you would like control over it? It may be more practical to have people who WANT to be kept alive indefinitely, in persistent vegetative states for years, who should prepare legal documents – it would save so much paper.
Moral decisions should not be court-ordered.
An interesting aspect about patients refusing treatment is that your competence is frequently not questioned until you refuse treatment. If the elderly refuse, they are said to be senile because after all, everyone wants to live as long as they can – no matter what! Right? Parents who tell doctors to do all they can for their crippled babies are thought of as model parents, but parents who refuse are said to be negligent, uncaring, selfish, and cruel.
I see control as one of the most vital aspects of human dignity. I have seen patients’ rights demonstrated on a continuum: from those who have been given none at all, to those who were given the ultimate control. Believe me, patients with control do better. It’s better for your health to be in control psychologically and physically.
Death can even be beautiful when a patient has been fully informed, and given support and pain control. We should be with the patient in whatever he decides. If we give them the right to their identity and control, they can die in peace with dignity. The terminally ill patient has no control over how much technology science will come up with; all he wants is control over his own body.
Doctors are obligated to tell the truth. All of nursing revolves around the fundamental idea that patients have, not only the right to be involved in their health planning have the right to refuse, but it is commonly known that patients who are compliant get better faster when in control of their care. The difference between ethics and law is ethics goes much further and is aimed at the patient’s benefit – the law is to protect the caregiver.
I’m sorry to say that I frequently see patients being denied their civil rights in our paternalistic medical system. I see patients being treated like children. It’s similar to how the government in seeking to protect women, actually deprived them of their rights. We cannot protect people from the inevitability of death, but we can help them to die with comfort.
There is paranoia about the law in health care. Health professionals are making treatment choices to avoid litigation instead of being directed by the actual needs of the patient. What’s ethically appropriate, goes along with the patient’s wishes, and is humane – serves as the best defense – ethically or legally. Defensive medicine makes the law primary and puts ethics second.
Most health professionals were not taught to ask, “Am I saving a life or am I abusing a patient”? Even if there are some of us who do ask, it is not practiced. If you, as a health professional, say you feel the situation is abusive you are seen as an outcast – I know that feeling! Surely our goal cannot be to prolong suffering, to experiment at the patient’s expense, to make money, or to support the ego of doctors.
New Law …
Back to the law again and with the hopes of ending on a positive note, I’ll tell you about a seminar I attended in March, given by the Illinois Hospital Association. The purpose of the seminar was to educate hospitals and nursing homes of new legal precedence established via the Illinois Supreme Court. The new law called The
Patient Self Determination Act will go into effect on Dec 1, 1991.
This new law will:
-Mandate that all Illinois hospitals inform patients upon admission about their right to refuse treatment.
-Ask them whether or not they have advance directives.
-Obligates them to place them in the medical record if they do have an advance directive.
-Will require that patients be given written information about advance directives.
-Must not discriminate against a patient for refusing treatment.
-Must educate staff and the community about advance directives.
-If doctors can’t go along with a patient’s wishes, they must see to it that they get a doctor that will.
-It is supposed to ensure compliance with patient’s wishes.
This law will make Illinois the most liberal state in the union as far as patient rights are concerned. The supreme court left it to the states and I’m sure glad that our state is taking real initiative in trying to insure patient rights.
Conclusion …
1. The right to refuse or accept medical or surgical treatment along with the right to have advanced directives.
2. The providers must have written policies respecting the implementation of these rights.
3. They must ask a patient upon admission as an inpatient whether he has an advanced directive and must document it in the medical record of the patient.
4. No discrimination is allowed if patients refuse treatment.
5. Ensures compliance with patient wishes.
6. They must educate their staff and the community about advanced directives.
Implications for the Future …
The change in the definition of terminal illness makes the living will an even more useful tool. It loosens the act’s restriction as far as the removal of artificial nutrition and hydration.
The Patient Self Determination Act was a direct result of the Longeway and Greenspan cases. This new act goes into effect on 12-1-91 and requires a provider who participates in Medicare or Medicaid to maintain written policies and procedures. They must provide written information to adult patients concerning:
A combination of factors has led to societies’ demanding support for their rights in these matters:
-The paternalistic nature of medicine.
-The abuse of power in medicine occurs due to the patient’s extreme vulnerability and lack of knowledge. (Knowledge IS power).
-The rapidly increasing amount of technology without corresponding laws to deal with its profound consequences.
***
Because illness places us in a psychological state of vulnerability we NEED assistance, support, and encouragement to assert our rights. Patients, despite knowing on an intellectual level that they have the right to refuse treatment, do need education, legal backup, and a collective societal sense of the plight of the ill person.
I would hazard to guess that the increasingly elderly population, affected greatly by this technology, has had a powerful effect on the popularity of these issues today. Society is demanding that the legal system address these sensitive issues because, although painful to deal with, the costs in human psychological and physiological suffering, is even worse to face. I think that the education of the public will place more power in the hands of the healthcare consumer. I know that many patients desperately fear being on life support; they, however, also lack the psychological strength needed to refuse and thus face negative sanctions from their families, health professionals, and society in general.
The financial costs are very real too. They are even worse if you consider that many do not want expensive technology. I wonder how long Medicare and Medicaid will pay for “vegetative” care when even good health insurance is depleted? Eventually, the cost of this “useless” care will take away from the care of patients who can benefit.
I have not seen the issue of the severe nursing shortage discussed in my readings on this subject. No one seems to realize that there aren’t enough nurses to take care of these patients in vegetative states. How would you feel if nurses, who might care for your injured child, were too busy occupied with patients who were vegetative? Most nurses go into the field because they want to help people, can you imagine the rewards in taking care of vegetables that you know so well, on an intellectual level, are not gaining from your care? Talk about burnout!
The new case rulings and the Patient Self-Determination Act are starting in the right direction. They cannot cure the many cases in which the abuse of technology is out of sight of public awareness, but at least it offers some hope for the future. At least we are beginning to inform people that they DO have the power to control their health care.
Conclusion …
In conclusion, life without the freedom to control the intrusion of your own body, without your unique identity, is not a life that any state should be allowed to compel us to.
Bibliography
The United States Law Week Listing of U.S. Supreme Court 1989. Decisions 11-28, 58 LW 2307
Golden, Yosh (Law Bulletin Staff Writer). (1988). Hand-out Law & Values Class, De Paul University. “Life Support Case Considered” November 15.
Grady, William (Legal Affairs Writer) Hand-out, Law & Values (1989). Hand-out DePaul University “Justices Set Right-To-Die Rules Food Can Be Withheld From The Terminally Ill”. Chicago Tribune Section 1 November 14.
Illinois Hospital Association Seminar “Life Sustaining (1991). Treatment Issues and Answers.” Hand-out. March 21.
The United States Law Week Listing of U.S. Supreme Court (1990). Decisions 7-24, 59 LW 2049.