This procedure is intended for the treatment of excessive menstrual bleeding called menorrhagia, due to benign causes in pre-menopausal women who have completed childbearing. It is estimated that 1 in 5 women experience excessive menstrual bleeding that can result in fatigue, anemia, embarrassing accidents and restricted activity. The NovaSure Ablation System is the newest endometrial ablation treatment option available to these women. The concerns raised about the procedure ranged from whether it was a form of direct sterilization to whether it could be performed in any Catholic medical facility considering that one of the contraindications for the procedure is that future pregnancy should be avoided. Pregnancies following endometrial ablation can be dangerous to both the mother and the fetus. As a result, it is recommended that women who use this procedure should use some form of birth control if they decide to undergo the NovaSure endometrial ablation procedure. This is a relatively new procedure that was approved by the Food and Drug Administration (FDA) on September 28, 2001 and declared safe and effective based on the results of pre-clinical and clinical studies.

Under the ethical principles of respect for persons, beneficence and nonmaleficence this procedure is ethical and can be performed in Catholic hospitals.

Respect for persons refers to the right of a person to exercise self-determination and to be treated with dignity and respect. One of the fundamental elements of a physician-patient relationship is the right of a patient to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives. This obligation by physicians includes within the obligation to inform patients of all current medical options available to them for a particular condition. The NovaSure Ablation System is one of various options open to women who are experiencing menorrhagia. Because of the risks and benefits associated with  the other options, the first option should always be the drug therapy option of using estrogen-progestogen combinations or progestogens alone. This therapy is the safest and allows the woman to maintain her fertility. However, if this is unsuccessful then the D & C would be the next step to control the excessive bleeding. This does not provide the patient with long-term definitive results but in combination with the drug therapy it allows women to maintain their fertility. Of the ablation methods, it appears that the NovaSure System is the safest and most effective. It is also a less risky method and a less invasive alternative than a hysterectomy which should be the last option. While the NovaSure System has its risks, they are far less than a hysterectomy which is a major surgical procedure with its accompanying surgical and anesthesia risks and has a lengthy recovery period.  

Birth control is an issue with this procedure. The Ethical and Religious Directive for Catholic Health Care Services state clearly that “Catholic health institutions may not promote or condone contraceptive practices but should provide, for married couples and the medical staff who counsel them, instruction both about the Church’s teaching on responsible parenthood and in methods of natural family planning.”[1] The NovaSure Ablation procedure is for women who have excessive uterine bleeding that can cause serious health problems. Many of the women this effects are celibate women and birth control would not be an issue for them. Married women should be instructed about the dangers of becoming pregnant after the NovaSure Ablation procedure and should be instructed on the proper use of Natural Family Planning (NFP). In good conscience, however, the physician should explain to the women that there are other methods of birth control available to them that may also reduce their chances of becoming pregnant. Patients have a right to be informed about the advantages and disadvantages of any treatment as well as about all viable alternatives. Unless patients are told about the other birth control options available to them, they cannot give informed consent. Giving each person this information does not violate Directive 52 because the physician can clearly state that the Catholic Church only approves of NFP and that if used correctly and consistently it can help the woman avoid possible pregnancies in the future. Failure to give all the options available to protect the health of the woman and her fetus, if the woman should become pregnant, would violate the basic dignity and respect that all persons deserve.

Beneficence involves the obligation to prevent and remove harm to and to promote the good of the person by minimizing possible harms and maximizing possible benefits. Beneficence includes nonmaleficence, which prohibits the infliction of harm, injury, or death upon others. In medical ethics this principle has been closely associated with the maxim Primum non nocere: “Above all do no harm.” After examining the possible options for a woman with excessive uterine bleeding, it appears that the NovaSure Ablation System is both the most effective and the safest of the new generation of endometrial ablation devices. As stated above, drug therapy should be the first treatment option but it is only effective about 50% of the time and usually must be continued in order to remain effective. The D & C procedure can be a second tier option used if drug therapy is ineffective but it is only a temporary solution that reduces bleeding for a few cycles. Conventional endometrial ablation removes the lining of the uterus with an electrosurgical tool or laser and effectively reduces the bleeding in approximately 85% of patients. The risks however include perforation of the uterus, bleeding, infection and even heart failure due to fluids used to open or distend the uterus.[2] The new generation of endometrial ablation devices destroy the endometrium by using either heated fluid or freezing temperatures to destroy the tissue.  These options are intended for women who no longer desire to maintain their fertility.[3] The benefits of the NovaSure Ablation System clearly outweigh these alternative options because it is safer, more effective, less invasive, and does not destroy the endometrium and cause the woman to become sterilized. In addition, prior to other endometrial ablation procedures, patients often need to take a pretreatment drug such as Lupron for 1 to 2 months to thin the lining of the uterus. No pre-treatment drugs are needed with the NovaSure Ablation System.[4]

The only other treatment alternative is a hysterectomy. As stated above, a hysterectomy is a major surgical procedure performed in the hospital under general anesthesia and is associated with the risks and complications of major surgery. Some complications include blood clots, infection, excessive bleeding or an adverse reaction to the anesthesia. Other risks are:

1. Damage to the urinary tract, bladder or rectum during surgery, which may require further surgical repair.
2. Loss of ovarian function.
3. Early onset of menopause[5]

In addition to the hospitalization, depending on the technique used, a recovery period of up to six weeks is not uncommon. By contrast, the pre-clinical, clinical and post-approval data on the NovaSure Ablation System shows this procedure to be more beneficial to women than a hysterectomy. One major advantage over a hysterectomy is that this procedure is a minimally invasive outpatient alternative.  General anesthesia and its possible complications are avoided because the NovaSure procedure is usually done with local anesthesia with or without IV sedation. The NovaSure Ablation System has also been shown to improve the quality of life of those women who have undergone this procedure. In randomized, controlled clinical studies on this procedure a majority of patients had their bleeding reduced to light or moderate periods, and many reported that their bleeding had stopped completely. In addition, many women have experienced significant reduction in painful menstruation as well as meaningful reduction in PMS symptoms.[6] There are certain post-procedure complications that can be associated with this procedure. These include the fact that one can develop a fever, nausea, vomiting, shortness of breath, dizziness, bowl or bladder problems, and/or a greenish vaginal discharge. However, clinical studies have shown these complications to be minimal. Most women can return to normal activities within a day or two of their treatment. Sexual activity can be resumed after the patient’s first check-up, usually 7 to 10 days after the procedure. Surgical risks can be perforation of the uterus, bleeding, infection, injury to organs within the abdomen and pelvis and the accumulation of blood within the uterus due to scarring. Another important risk is that it may decrease the doctor’s ability to diagnose cancer of the endometrium.[7] Despite these possible complication and risks, the clinical data collected to date confirms that the benefits and advantages of the NovaSure Ablation procedure clearly outweigh its risks. By comparison to the other endometrial ablation procedures and a hysterectomy, the NovaSure Ablation procedure is safer, less invasive and more cost effective.  Ethically, the NovaSure Ablation procedure respects the autonomy of the patient by giving the woman a procedure that is safer and more effective and it clearly passes the test of beneficence and nonmaleficence.

Conclusion: The NovaSure Ablation procedure is not only an effective and safe modality in the treatment of patients suffering from excessive menstrual bleeding; it also has a very low complication rate and avoids all endometrial pretreatments. This procedure is accomplished within 90 seconds and can easily be performed under IV sedation and paracervical block anesthesia in an office setting. The medical benefits and the cost effectiveness of this procedure make it a very viable option to a hysterectomy, which under most circumstances is the last option for a woman with menorrhagia. There is the issue that women who undergo this procedure should avoid future pregnancies for their own health and the health of the fetus. However, in many circumstances, particularly with celibate women, this is not an issue. For those who are married, the physician should explain the option of NFP, along with other options to satisfy the ethical principle of informed consent. This should satisfy the birth control issue that concerns some about allowing this procedure in a Catholic health care facility.  Under these circumstances, it appears that the NovaSure Ablation System is not only ethical but should be utilized in Catholic facilities for the good of women suffering from menorrhagia.

 

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[1]United States Conference of Bishops, Ethical and Religious Directives for Catholic Health Care Services, fourth edition, Washington, D.C., 2002, Directive 52, p. 28.

[2] Education Department-Novacept, Inc, p. 4.

[3] Education Department-Novacept, Inc, p. 4.

[4] Education Department-Novacept, Inc, p. 2.

[5] Mayo Clinic Staff, “Hysterectomy: Benefits and Alternatives,” Mayo Clinic Health Information, March 15, 2004, pp. 1-5. http://www.mayoclinic.com/invoke.cfm?id=HQ00905

[6] Education Department-Novacept, Inc., p. 4. See also, FDA, “Summary of Safety and Effectiveness Data,” p. 19.

[7] Education Department Novacept, Inc., p. 5.

Genetic Research and Testing – Introduction

During the past 20 years, advances in molecular biology and the Human Genome Project have had a tremendous influence on the field of genetics. After centuries of description, we are now on the eve of truly understanding the cellular processes of the human body. Up until the late 1980s, tracing the causes of genetic disease involved time-consuming linkage analysis of families by limited sets of genetic markers. A new age has dawned in the Human Genome Project – the mapping of all our 80,000-100,000 genes and the decoding of our entire DNA sequence of 3 billion base pairs. The Project has tremendously stimulated the development and dissemination of advanced DNA technology, and the first and substantial result has been a spectacular acceleration in finding out the causes of genetic disease. Nearly all common genetic diseases (150-200) and a large number of rarer ones (600-800) have been traced back to one or more defective genes (1500-2000). In most cases, causal mutations have been found, which has delivered a substantial improvement in diagnostic power.

Genetic testing can be done at many different times in one’s life. If parents are concerned they may be at risk to have a child with a genetic disorder, such as Tay Sachs Disease, they may undergo carrier identification testing. Women may undergo prenatal testing to determine whether their fetus has a genetic disorder, such as Downs Syndrome or Cystic Fibrosis. Newborn infants get genetic screening checks for various metabolic diseases, such as phenylketonuria (PKU).  Late-onset disease testing determines if one has a genetic change that increases the risk for developing a disease, such as breast cancer or Huntington’s Disease. Genetic testing can determine whether a person will have a particular reaction towards a drug or medication, thus fostering patient-specific medical treatment.  And forensics uses genetic identification (DNA fingerprinting) to solve crimes or identify a body.

Ethicists are struggling to keep pace with rapid advances in genetic research and technology. Reaching ethical conclusions about the new genetics is challenging for two reasons. First, it is inherently difficult to understand the subtleties of genetics and the wealth of data tumbling out the Human Genome Project. Second, it is almost impossible to foresee accurately the implications and consequences, short-term and long-term, intended and unintended of genetic research and technology.

On the issue of genetic testing for an individual, three ethical principles are relevant:

1. Consent … Genetic information should only be obtained from persons when they have given genuine consent. Consent is genuine when the information has been communicated appropriately and agreement is given freely.
2. Privacy … Every person is entitled to privacy. Privacy in the context of genetic testing can be understood as a person’s right not to be obliged to disclose information about his or her genetic characteristics.
3. Confidentiality … Where an individual has chosen freely to disclose private genetic information, the disclosure should be treated as confidential. This means that genetic information should not be communicated to others or used for new purposes without the consent of the person disclosing the information.

At the level of public policy, the primary focus of debate on genetic testing concerns the use and storage of genetic information. Once genetic information has entered databases, it may be difficult to prevent disclosure or effect its removal. One area of concern is the use of genetic information by insurers. There is the risk of basing decisions on unreliable tests and the possibility of excluding vulnerable groups from obtaining insurance.  Another area of concern is the use of genetic information in the workplace. The availability of such information may subject employees to unfair discrimination. On May 21 2008 Congress passed and the President signed the Genetic Information Non-discrimination Act which provides substantial protection for Americans against discrimination based on their genetic information when it comes to health insurance and employment.

Genetic Research and Testing – Religious Perspectives

A literature search of “religion”, “spirituality” and “genetic counseling” reveals remarkably little information as to how religious values contribute to genetic decisions or the attitudes and behaviors of healthcare providers. Questions of faith and spirituality generally arise in two ways in the genetics arena. The first has to do with the ethical concern that in our use of genetic technologies we are somehow “playing God”; the second encompasses the pastoral issues that accompany genetic testing and decision making, which include grief, suffering and loss.

The charge of “playing God” is often used to suggest that humans, through our genetic technologies, are exceeding the bounds of what we ought to be doing. As medical technology advances, much of what was once attributed to God, such as control over death and life, has been challenged by medical technology. We can now manipulate and sustain life to a considerable degree; as a result, we sometimes find ourselves confused about where our human capabilities and responsibilities end. At its root, the issue of how much one should control human life, disease, death and the genome is a moral question about how we perceive ourselves in the world and in relationship to God. The Judeo-Christian tradition offers a variety of perspectives. In one view, humans are perceived as God’s creation, part of the natural world, and thus subject to the same natural laws as other living things. In another, we stand apart from nature, as “co-creators” with God and made “in the image of God”, and by virtue of our reflective capacities and intelligence, empowered to manipulate nature. These two images often come into play in decisions at the beginning and end of life and are likely to surface in genetic decisions, depending on the decision maker’s personal attitudes, values, goals and beliefs.

Questions of faith and spirituality also arise in the context of genetic testing and decision making. Once the decision is made to go forward with genetic testing, there is always the risk that testing will bring unfavorable results. As in much of medicine, after receiving unexpected and disappointing news, first reactions may include shock, grief, guilt and confusion. Many will attempt to answer the universal questions: “Why me?” “Why now?” “What did I do wrong?” They may turn to their faith to ask, “Why is God doing this to me?” “What should I do now?” “What does God want me to do?” It is not uncommon for people to blame themselves when facing bad news, to assume the diagnosis is a consequence or punishment for some act of stupidity or moral flaw. They may blame God, angry that a supposedly powerful God has let this misfortune occur. Or they may simply be morally and theologically confused, wondering if and how their faith can help them. At such times of spiritual crisis, people often seek the advice and counsel of friends and spiritual advisers. Over time, in the context of their ongoing personal relationship with God, most people of faith ultimately arrive at acceptance and peace. Others struggle with this spiritual conflict all their lives.

RGT (reproductive genetic technology) presents ethical and religious challenges for Judaism, Christianity and Islam because prenatal genetic testing can lead to a decision to abort the fetus. The three monotheistic religions have different views on the beginning of human life and thus their teaching on abortion. For Judaism the fetus gains human status at forty days of gestation, once it is implanted and growing in the mother’s womb. For Islam the fetus gains human status by one hundred twenty days. For Roman Catholicism and Evangelical Christian denominations, human status begins at the moment of conception.

For Judaism and Islam, PGD (preimplantation genetic diagnosis) is an option which avoids fetal termination. This procedure involves screening the fertilized egg in vitro at the very early four-to-eight-cell stage. Many Jewish and Islamic theologians would say that the embryo at this early stage has elements of humanness but has not yet attained human identity. For many couples of these two faiths, PGD is a way to avoid giving birth to a child affected with a genetic condition that is not viewed as an abortion. In contrast, Roman Catholicism and Evangelical Christian denominations are opposed to PGD. From their religious point of view, also shared by Jewish Orthodoxy, avoiding having children with severe genetic conditions must be accomplished through some other means. That means is preconception genetic testing to check whether both members of an at-risk couple carry a single gene copy for the same genetic condition. If they do, adoption is one option.

Despite the official positions of the three monotheistic religions, there are differences of opinion in their members. Most liberal and mainline Protestant as well as liberal Jewish groups are not opposed to abortion and do not hold embryonic life to be sacred. They tend not to be advocates of reproductive genetic technologies, but neither are they opposed.

Despite differences of opinion among religious groups on RGT, religion has served as a prime contributor to discussion of whether and in what context a given application of genetic technology should occur. It serves as a qualitative check on the contention that just because a technology is possible it should be launched into use. The qualitative role implies that religious principles and beliefs are capable of imposing more than just an absolutist stamp on action. They can suggest alternatives based on the type of application envisioned and the circumstances involved. Judaism, Christianity and Islam have all welcome the therapeutic potential of genetic research in the prevention and cure of diseases as long as it does not bring harm to the individual or human society. All three religions look favorably on somatic cell gene therapy, aimed at restoring bodily cells, because it so directly carries forward the ethos of healing. All agree that germ-line gene therapy targeting adult reproductive cells, gametes, and/or early embryos poses overwhelming risks. Errors unintentionally introduced into the genome would be perpetuated into future generations. Beyond safety issues, all share a concern for fairness and equitable distribution of benefits and burdens, particularly for the less well-off. Ongoing dialogue among religious groups will help individuals and human society to face the many challenges presented by genetic research and technology.

 

References cited:

Evans, J.H., “Religious Belief, Perceptions of Human Suffering, and Support for Reproductive Genetic Technology”, Journal of Health, Politics, Policy and Law, 31: 6, December 2006, 1047-1074

“Evans, J.H. & Hudson K., “Religion and Reproductive Genetics: Beyond Views of Embryonic Life”, Journal of the Scientific Study of Religion, 2007, 46:4, 565-581

Modell, S., “Genetic Reproductive Technologies in the Light of Religious Dialogue”, Zygon, 42:1, 163-181

Parker, M. & Hope, T, “Problem Cases in Medical Ethics”, The Medicine Publishing Company, 2005, 33:2, 22-24

Rosner, F., “Judaism, Genetic Screening & Genetic Therapy”, The Institute for Jewish Medical Ethics, 2008, http://jewishvisuallibrary.org/jsource/Judaism/genetic.html

White, M.T., “Religious and Spiritual Concerns in Genetic Testing & Decision Making”, The Journal of Clinical Ethics, Summer 2006, 158-167

     In society today there exists a void between the time a terminally ill patient is informed that further medical treatment is unless and the beginning of palliative or hospice care. During this period of time the potential exists for a terminally ill patient to be confronted with two distinct options. First, the patient can be overwhelmed by the fear of suffering and death, which can result in feelings of abandonment and despair. Second, the patient can, with the support of loved ones, accept the inevitability of suffering and death and grow in his or her dependence upon others and God.  I believe this time of transition also exists for family members and friends of the terminally ill patient. They too are confronted with two distinct options. They can avoid the inevitable by isolating the patient in the hospital, under the guise of what is best for the patient, which can often lead to feelings of guilt and remorse after the death of their loved one. Or, they can support the terminally ill patient by their loving presence, which allows family members and friends to face their deepest fears and to embrace death as part of the normal cycle of life.  For both patient and family, this period of transition is crucial, because within this time frame the bond of relationship between patient and family is transformed. This transformation can become either the basis for alienation and despair, or the essence of acceptance and hope.

 

To bridge the transition between the time medical treatment ceases and palliative care begins, I am proposing a Christian ritual that can be used by clergy, pastoral care workers, parish ministers of care, etc., in order to ensure that the fear of abandonment is transformed into the hope of acceptance through the commitment of family and friends. This is a period of time when many in the healing ministry feel helpless in the presence of the suffering patient.  What does one say to a patient when he or she has been told that further medical treatment is useless? Any words that might be spoken at this moment would seem almost hollow. Instead, a sense of aloneness seems to pervade the situation. Many within the healing ministry recognize an emptiness here that needs to be filled. But how can this emptiness be filled and who can fill it? To address this need, I am proposing a “Rite Of Christian Commitment To The Terminally Ill,” which can be administered by anyone in the healing ministry in conjunction with family members and friends of the terminally ill patient.  Ritualizing our Christian commitment to one another enables the bond that holds us faithful to one another, which can be expressed by our willingness to be present to one another, to be revitalized and strengthened.  I believe this ritualization is not only needed but is imperative, especially now when many in our society are advocating physician-assisted suicide as the most humane viable option for the terminally ill.  Unless terminally ill patients know that family and friends are committed to be present to them during the dying process, the option of physician-assisted suicide becomes more of a reality.   

 

Rite of Christian Commitment To The Terminally Ill

 

I.  Introductory Rites:

 

            A. Greeting

                        1. The peace of the Lord be with you always.

                                    R. And also with you.

 

            B. Instruction:

My dear brothers and sisters, the Lord Jesus, who went about doing good works and healing sickness and infirmity of every kind, commanded his disciples to lovingly care for the sick and dying, to pray for them, and to lay hands on them. In this celebration we shall entrust our sick brothers and sisters to the care of the Lord, asking that he will enable them to bear their pain and suffering in the knowledge that, if they accept their share in the pain of his passion, they will also share in its power to give comfort and strength. We ask this through Christ our Lord. Amen^[i]

 

II. Liturgy Of The Word

            A. Suggested Readings:

                        Hebrew Scripture                                                      New Testament

 

                        1. Psalm 23                                                                  1. 2 Corinthians 1: 3-7

                        2. Psalm 71                                                                  2. Romans 8: 31b-35, 37-39

                        3. Job 7: 1-4, 6-11                                                       3. Romans 8: 18-27

                        4. Job 7: 12-21                                                            4. Colossians 1:22-29

                        5. Job 19: 23-27                                                          5. Matthew 5: 1-12 

                        6. Isaiah 35: 1-10                                                        6. Matthew 11: 28-30

                        7. Isaiah 52: 13-53:12                                               7. Luke 12: 22-32       

                        8. Isaiah 61: 1-3                                                            8. John 6: 35-40         

                        9. John 6: 53-58                                                           9. Wisdom 9: 1, 9-18                                                                                                                                         

III. Prayers Of Christian Commitment

 The Pastoral Care member will begin by introducing the individual prayers of Christian commitment with a short prayer calling upon God to give comfort and care to the person who is ill. Then each person present will extemporaneously present a prayer for the person who is ill stating his/her intention to be present to the person who is ill throughout the remainder of their illness. The patient, if possible, will then state his/her intention to allow family and friends to be present to him/her.

 Introduction:

 Jesus came as healer of body and of spirit in order to cure all our ills. He chose to be like us in all things, in order to assure us of his compassion. He bore our weakness and carried our sorrows. He felt compassion for the crowd, and went about doing good and healing the sick.  With trust let us pray to Jesus that he will comfort (N.) with his grace and that he will fill (N.) with new hope and strength.

 Family & Friends:

I pray that Christ will comfort you as you follow him on the path he has set before you. As your (family member/ friend)I promise to walk with you on your journey and that I will be present to you in both word and action. Just as Jesus felt compassion for the crowd, and went about doing good by caring for them, I promise that I will watch over you, that I will be there when you need me, and that I will show you the love of Christ by my very presence. (N.), in the presence of God and your family, I commit myself to you with the love of Jesus Christ.

  Patient:

The patient, in his/her own words, accepts the care and love offered and agrees to allow family and friends and health care professionals to be present to him/her.

 IV. Prayer of Blessing

 All present will extend their hands over the person who is ill and pray the following prayer.  At the conclusion of the prayer each person will trace the sign of the cross on the forehead of the person who is ill.

 Lord, our God, you sent your only begotten Son into the world to bear our infirmities and to endure our sufferings. Look with compassion upon your servant (N.). Give (him/her) strength in body, courage in spirit, and patience in pain.  Support (N.) with your grace, comfort (him/her) with your protection, and give (him/her) the strength to fight against all evil. Since you have given (N.) a share in your own passion, help (him/her) to find hope and consolation in suffering, for you are Lord for ever and ever. Amen

 All: Our Father

 V. Concluding Rite:

 God of mercy, look kindly on your servant (N.) who has grown weak under the burden of illness. Strengthen (him/her) by your grace and help (him/her) to remain close to you in prayer. Fill (him/her) with the strength of your Holy Spirit. Keep (him/her) strong in faith and serene in hope, so that (he/she) may give us all an example of patience, and joyfully witness to the power of your love.

Lord, we ask you to soothe the hearts of the family members and friends of (N.) gathered here today. In your loving kindness enlighten their faith, give hope to their hearts, and peace to their lives.  We ask this through Christ our Lord. Amen.

 Dismissal:

Go in the peace of Christ to serve him in the sick and in all who need your love.

 

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^[1]The Joint Commission of Catholic Bishops’ Conferences, “Order For The Blessing Of Adults,” Book Of Blessings, (New York, Catholic Book Publishing Co., 1989), No.383, p. 165.

Question:  Should doctors always tell the truth to their patients? There is an ongoing debate among physicians, families and patients on this issue. The debates are complex but they usually come down to disagreements about the limits of paternalism and the proper balance between the principles of autonomy and beneficience.

The principle of nonmalficence – the duty to do no harm – and the principle of beneficience – the duty to act for the benefit of others – have ancient roots in the code of medical ethics. But truthfulness does not. The Hippocratic Oath does not mention an obligation of truth-telling or disclosure, and until 1980 even the professional code of the American Medical Association did not say anything about dealing honestly with patients. Over the years physicians viewed the truth as something to conceal or reveal in so far as it impacts the therapeutic welfare of the patient. For example, a physician might be reluctant to disclose the diagnosis of cancer to a vulnerable patient if he judges that the truth would be harmful, unsettling and depressing. This paternalistic approach – doctor knows best – is less common today. Now there is more of an emphasis on the principle of autonomy and informed consent.

Contrary to what many physicians have thought in the past, a number of studies have demonstrated that patients do want their physicians to tell them the truth about diagnosis, prognosis, and therapy. For instance, 90% of patients surveyed said they would want to be told of a diagnosis of cancer or Alzheimer’s disease. Similarly, a number of studies of physician attitudes reveal support for truthful disclosure. For example, whereas in 1961 only 10% of physicians surveyed believed it was correct to tell a patient of a fatal cancer diagnosis, by 1979 97% felt that such disclosure was correct.

When physicians communicate with patients, being honest is an important way to foster trust and show respect for the patient. Patients place a great deal of trust in their physician, and may feel that trust is misplaced if they discover or perceive lack of honesty and candor by the physician.

In addition to fostering trust and demonstrating respect, giving patients truthful information helps them to become informed participants in important health care decision. Thus, patients should be told all relevant aspects of their illness, including the nature of the illness itself, expected outcomes with a reasonable range of treatment alternatives, risks and benefits of treatment, and other information deemed relevant to that patient’s personal values and needs. Treatment alternatives that are not medically indicated or appropriate need not be revealed. Facts that are not important to the patients ability to be an informed participant in decision making, such as results of specific lab tests, need not be told to the patient. Also, complete and truthful disclosure need not be brutal; appropriate sensitivity to the patient’s ability to digest complicated or bad news is important.

There are two main situations in which it is justified to withhold the truth from a patient. As noted above, if the physicians has compelling evidence that disclosure will cause real and predictable harm, truthful disclosure may be withheld. Examples might include disclosure that would make a depressed patient actively suicidal. This judgment, often referred to as the therapeutic privilege, is important but also subject to abuse. Hence it is important to invoke this only in those instances when the harm seems very likely, not merely hypothetical.

The second circumstance is if the patient states an informed preference not to be told the truth. For instance, some patients might ask that the physician instead consult family members. In these cases, it is critical that the patient give thought to the implications of abdicating their role in decision making. If they chose to make an informed decision not to be informed, however, this preference should be respected.

A DNR order is a medical order issued by a physician or other authorized practitioner that directs healthcare providers not to administer CPR (Cardio Pulmonary Resuscitation) in the event of cardiac or respiratory arrest. A DNR order may be written in the absence of a living will or the conditions that would make a living will operative. A living will may contain a provision indicating that a patient does not desire CPR. However, if a patient’s preference to forgo CPR is expressed only in a living will, CPR will be withheld only when a physician has determined that the patient is not competent and has certified in writing that the patient has an end-stage medical condition or is permanently unconscious.1 Without such physician determination and certification or without a DNR order, the patient’s expressed preference for withholding CPR is not sufficient.2 In order for a patient’s preferences to be carried out, patients, families, and healthcare providers must understand the distinction between the circumstances under which a living will and a DNR order are applicable.
A DNR order is not subject to the preconditions imposed by the Living Will Act. A DNR order becomes operative only in the narrow context of cardiac or respiratory arrest regardless of the precipitating clinical event and does not preclude otherwise appropriate treatments or life-sustaining interventions.2,7 Misinterpretation of DNR orders was demonstrated by a survey conducted in an outpatient cancer center, which showed that only 34% of the patients correctly understood the meaning of a DNR order; 66% of the patients did not realize that a DNR order would result in not being resuscitated even if the cause of the cardiac or respiratory arrest was potentially reversible.8
In June of 2002 Pennsylvania enacted the Do-Not-Resuscitate Act (DNR Act) (P.L. 409, No. 59) (20 Pa.C.S. §§ 54A01-54A13). The DNR Act empowered a terminally ill person or the person’s surrogate to secure an out-of-hospital do-not-resuscitate order and, at the person’s option or the option of an authorized representative, an out-of-hospital DNR bracelet or necklace. These items direct emergency medical services (EMS) personnel in the out-of-hospital setting not to provide the person for whom they are issued with cardiopulmonary resuscitation in the event of the person’s cardiac or respiratory arrest. The DNR Act also specified the circumstances under which an appropriate representative of a person who issued a declaration under the Advance Declaration for Health Care Act (former Living Will Act) would be able to secure an out-of-hospital DNR order, bracelet or necklace for the person if the person became permanently unconscious. These provisions, supplemented by Department of Health regulations (28 Pa. Code §§ 1051.1-1051.101), went into effect March 1, 2003, and were amended February 7, 2004.

Specifically, an out-of-hospital DNR order is a written order that is issued by a person’s attending physician that directs EMS providers to withhold CPR from the person in the event of that person’s cardiac or respiratory arrest. Thus, if an ambulance is called to attend to a person for whom an out-of-hospital DNR order has been issued and the ambulance crew observes the out-of-hospital DNR order with original signatures with the person, or observes that the person is wearing an out-of-hospital DNR bracelet or necklace, the ambulance crew will not attempt CPR unless it is appropriately communicated to a member of the crew that the out-of-hospital DNR order has been revoked.

Definitions:
1. Cardio-Pulmonary Resuscitation (CPR): refers to the medical procedures used to restart a person’s heart and breathing when the person suffers cardiac or respiratory arrest. CPR may involve simple efforts such as mouth-to-mouth resuscitation and external chest compression. Advanced CPR may involve insertion of a tube to open the person’s airway or to assist breathing, injection of medications, or providing an electrical shock (defibrillation) to resuscitate the heart.
2. End-Stage Medical Condition: An “end-stage medical condition” is an incurable and irreversible medical condition in an advanced state caused by injury, disease, or physical illness that will, in the opinion of the attending physician, to a reasonable degree of medical certainty, result in death, despite the introduction or continuation of medical treatment. If a patient having an end-stage medical condition serves as the reason for which an out-of-hospital DNR order is sought for that patient, the attending physician must make the determination that the patient has an end-stage medical condition before the physician may issue an out-of-hospital DNR order for the patient. All persons who are in a terminal condition have an end-stage medical condition.
3. Permanently Unconscious: “Permanently unconscious” is a medical condition that has been diagnosed in accordance with currently accepted medical standards and with reasonable medical certainty as total and irreversible loss of consciousness and capacity for interaction with the environment. The term includes, without limitation, a persistent vegetative state or irreversible coma. If a patient being permanently unconscious serves as the reason for which an out-of-hospital DNR order is sought for the patient, the attending physician must make the determination that the patient is permanently unconscious and the patient must have previously executed a living will which provides that no CPR be administered in the event of the person’s cardiac or respiratory arrest if the person becomes permanently unconscious, or authorizes a surrogate or other authorized representative of the person to make that decision under those circumstances.
4. Emergency Medical Services (EMS) Provider: EMS providers are individuals licensed, certified, recognized, or otherwise authorized under the Emergency Medical Services Act (35 P.S. §§ 6921-6934) to provide medical care on an emergency, out-of-hospital basis. They are most frequently associated with ambulance services. EMS personnel who administer emergency treatment include EMTs (emergency medical technicians), EMT-paramedics (paramedics), prehospital registered nurses, ambulance attendants, first responders and health professional physicians. EMS providers also include individuals given good Samaritan civil immunity protection under Pennsylvania law (42 Pa.C.S. § 8331.2) when using an automated external defibrillator. Physicians who provide medical command to EMS personnel must also honor an out-of-hospital DNR order when appraised of it by EMS personnel.
5. Attending Physician: An attending physician is a physician who has primary responsibility for the treatment and care of the person. More than one physician may have primary responsibility for the medical care and treatment of a person. A physician who is requested to issue an out-of-hospital DNR order for a person needs to make a good faith judgment as to whether the physician is an attending physician of the person based upon the medical care the physician provides to the person. If the physician determines that the circumstances of the physician-patient relationship do not enable the physician to determine whether he or she qualifies as the patient’s attending physician, the physician will attempt to supplement that knowledge with information the physician secures after making reasonable inquiries of the person or the person’s surrogate or other authorized representative regarding the medical care the person is receiving from other physicians.
6. Surrogate: For purposes of the repealed DNR Act and the regulations that were adopted pursuant to that act, a surrogate is an individual who has, or individuals who collectively have, legal authority to request an out-of-hospital DNR order for another person or to revoke that order. Under the Act the term “surrogate” is limited to a health care agent or health care representative as those terms are defined in the Health Care Agents and Representatives Act (20 Pa.C.S. §§ 5451-5465). This does not include all persons who fall under the former definition of “surrogate.” However, the Act permits persons other than surrogates, by virtue of their special relationship to the person for whom an out-of hospital DNR order is sought, to also make a request for an out-of-hospital DNR order for that person. An example of such a person is a parent of a child who has an end-stage medical condition who is under 18 years of age and who is not emancipated, who has not graduated high school or been married, and who does not have a court-appointed guardian. Yet another example is a court-appointed guardian for an adult who has an end-stage medical condition and who the court concludes is unable to meet essential requirements for his or her physical health or safety because the person does not have the ability to receive and evaluate relevant information effectively or communicate relevant decisions. However, other than when a person is relying upon the definition of “surrogate” in the Act to qualify to ask for an out-of-hospital DNR order for another person, the focus should be on whether that person, by virtue of a special relationship to the person for whom the out-of-hospital DNR order is sought, has legal authority to request an out-of-hospital DNR order for that person. We encourage you to seek the advice of an attorney if you have a question regarding who can serve as a surrogate or other authorized representative for another person to request an out-of-hospital DNR order for that person.