Health Care Reform and an Old Fashioned Virtue

The Elephant in the Room

Most of us Americans are blessed with too much health insurance, and we do not use it wisely. The insured demand the most expensive treatment without a thought to how much it costs. We too blithely say, “my insurance will pay for it” without realizing that, in the end, we all pay for it.

The patient has an ethical responsibility to maintain or improve his or her own health as well as control costs. While it would be impossible to implement a program that forces people to live healthy lifestyles, it is reasonable to assume that healthier living would lead to lower healthcare costs.

The United States spends 18 percent of its GDP on healthcare, and the rate of increase far exceeds the rate of inflation. This trend is unsustainable. Healthcare economists estimate that between 40 and 50 percent of annual cost increases can be traced to new technologies or the intensified use of old ones. Economists say the control of technology is the most important factor in bringing costs down.

The problem is that patients expect high tech health care; doctors are primarily trained to use it, medical industries make billions selling it and the media loves to write about it. Technological innovation is as fundamental a feature of American medicine as it is in the industrial sector.

While doctors are often accused of over-prescribing diagnostic tests, this practice may be the result of patients who demand multiple tests – even if some are unnecessary. As health care technology innovates and its use increases, patients with insurance want the newest, most advanced and expensive treatments that insurance will cover. The most expensive treatments are not necessarily the best, and the patient has a duty to participate with the physician in making reasonable and cost-effective choices.

However, there is fierce opposition to any limitation in the use of medical technology; its use is deeply rooted in American culture. And politicians are reluctant to buck public opinion. Under the previous administration, Congress, with the support of physician groups and the health care industry killed two federal agencies designed to assess medical technology from a scientific and economic perspective.

Controlling healthcare costs requires a change in American culture. Since many of the effective means of controlling costs will be painful, due to our love affair with technology, resistance to change will be formidable. Effective control will force patients to give up treatments they think they need, doctors to sacrifice to a considerable extent their ancient tradition of treating patients the way they see fit, and industry to reduce its drive for profit. The fact that European countries can control costs and limit technologies without harming health is a patent rebuke to our way of doing things.

I worry about the Generation Y students in my college classroom. Upon graduation they’ll enter the workforce. Social Security and Medicare payroll deductions and escalating health insurance premiums will shrink their take-home pay each year. Today’s workers are paying the healthcare costs of today’s retired community. Will the money be gone when Generation Y reaches retirement?

Traditional virtues still receive attention in American culture, but discussion of one virtue-thrift-has all but disappeared, as affluence and extravagance have taken center stage. Perhaps we should reflect on the advice of the American Apostle of Thrift – Benjamin Franklin.

Old Ben would view our current healthcare reform discussion as a clarion call to change our ways and embrace the old-time virtue of thrift.  If all new diagnostic tests, procedures and treatments were subject to the rules of evidence-based medicine – objective evidence of superiority as opposed to traditional practice – that would be thrift. If pharmaceutical firms were required to prove the superiority of new and more expensive drugs over older and less costly ones, that would be thrift.  If medical equipment companies, which design new gadgets before the old ones get cold, were required to meet the same test, that would be thrift. If insurance companies were regulated more strictly and less ruled by the bottom line, that would be thrift.

Politicians are reluctant to propose any legislation that would place limits on the consumer. To do so, they fear, would be political suicide. Are they underestimating the virtue of the American people?  The healthcare debate is a “test of the national character. Perhaps the words of Ben Franklin have something to teach us: “Be industrious and frugal, and you will be rich”. If we elephants accept our duties and responsibilities in the healthcare reform process, our thrift will ultimately enrich us with affordable and high-quality healthcare.

Health Care Reform: Duties and Responsibilities of the Stakeholders

Who are the stakeholders in the healthcare system? For the purposes of our discussion we define stakeholders as those entities that are integrally involved in the healthcare system and would be substantially affected by reforms to the system. The major stakeholders in the healthcare system are patients, physicians, employers, insurance companies, pharmaceutical firms and government. Insurance companies sell health coverage plans directly to patients or indirectly through employer or governmental intermediaries. Pharmaceutical firms develop and then market medications which are prescribed by doctors to treat patients. Typically they receive remuneration through insurance or governmental drug-benefit plans. Many employers offer health insurance coverage with varying deductibles and co-pays for their employees. Physicians are the providers of medical care; patients are the recipients. And government subsidizes healthcare for the elderly, the disabled and the poor. All stakeholders have duties and responsibilities.

Clearly the interrelationship among the stakeholders in the healthcare system is rather complex. Two of the stakeholders, pharmaceutical firms and insurance companies, are publically owned corporations listed on the stock exchange. Their primary responsibility is to maximize stockholder wealth. Likewise, the primary goal of employers is to make money; however, their provision of health insurance for employees is a benefit, not a source of profit. Unlike the other stakeholders physicians have direct fiduciary duties and responsibilities towards their patients. Although they receive remuneration for their services, the doctor-patient relationship is a sacred trust that transcends monetary reward. Patients have rights, duties and responsibilities. Finally, democratic government has duties and responsibilities towards its citizens, but how they are defined in regard to the provision of healthcare is an evolving American story.

Insurance Industry

Currently rising premiums and strict requirements are keeping many people from obtaining health insurance. The insurance companies remain profit driven, but the nature of their service should not be profit focused. Adequate healthcare is becoming harder to obtain due to financial hardship. The insurance companies need to find an appropriate balance between their responsibilities towards both shareholders and patients. Quarterly reports for stockholders encourage the companies to focus more on profits than affordability. This causes insurance companies to have tight regulations against preexisting conditions so that mostly healthy individuals are selected for their plans. Such patients will not utilize costly procedures as often as individuals with chronic illnesses. However, this is unethical of insurance companies because it reduces healthcare to a profit centered industry, and prevents those in need from receiving care.

Pharmaceutical Companies

Pharmaceutical companies also play a key role in the healthcare system because many patients rely on their products. The prices for drugs are rising, and there are no caps to prevent them from reaching extravagant prices. The argument that the pharmaceutical companies need to charge ever higher prices to cover research costs is simply not true. Although PHARMA spent $43 billion on R&D in 2006, it spent nearly twice as much on promotion, and it consistently has profit margins far above those of most Fortune 500 companies.

Whether or not you argue that pharmaceutical companies have a moral responsibility to ensure that people can afford their products, at the very least they have the duty to be honest and practice fair marketing. Marcia Angell, previously an editor of the New England Journal of Medicine, has written extensively about the unethical behaviors of pharmaceutical companies. Let me cite one example. Through personal experience the author who had an office practice since the early 1980s, witnessed a sinister change in the way pharmaceutical companies market their products to physicians. Previously they sent pharmacists with depth of knowledge about their products to objectively educate the physician about the benefits and risks of a particular brand medication. However, since the late 1980s pharmaceutical firms send young attractive representatives with no formal training to market their drugs by establishing a social relationship with the physician and by offering incentives to prescribe their product. Many physicians whose prescribing practices are unduly influenced by pharmaceutical representatives share the blame. They tend to respond to conversation about certain drugs rather than reading the biomedical literature. 

Physicians

Physicians play a key role in ensuring that their patients receive adequate healthcare, but also in controlling the rising costs of healthcare. They have to find a balance between having a gatekeeper role for the insurance companies and being an advocate for the patient. Assigning a gatekeeper role to primary care physicians had the intention of lowering healthcare costs because fewer tests and referrals would be made. However, this is not working and it may be best to re-evaluate the role a primary care physician has in regards to referring patients. A coordinator role may be more beneficial than gatekeeper status. Also, since primary care physicians have increased the number of patients seen in a day to compensate for their decrease in revenue, this causes an increase in defensive diagnostic testing. The doctors do not have adequate time to review the chart or spend time with the patient, so they order more tests to reduce their liability risks. These actions cause healthcare spending to increase as well. By placing the physician between these two roles, a conflict of interest is created. Ethically, the doctor has a fiduciary duty to protect the interests of his patient, but in the current managed care environment, insurance companies give incentives to physicians to order fewer referrals and to cram more patients into each workday. Edmund Pellegrino stated, “What our health policies do to the individual patient serves as a reality check to what values we hold most dear and the ethical foundation of the policies we develop and impose”. It appears that money is at the center of our values.

 

Physicians also have obligations to patients independent of insurance companies. A physician has an obligation of beneficence to do whatever is necessary to benefit his patient. However if he acts independently (“doctor knows best”) without taking into account the desires of his patient, he is practicing paternalism. Thus, the obligation of beneficence must be balanced by the principle of patient autonomy. Each patient is unique and has the right to participate completely in decisions about his health.

 

Patients

Patients also have an ethical responsibility towards their own health and towards controlling costs. While it would be impossible to implement a program that forced people to live healthy lifestyles, it is reasonable to assume that healthier living would lead to lower healthcare costs. Some companies, such as Wal-Mart and the WHO, have stopped hiring employees that smoke to reduce healthcare related costs. Often doctors are accused of over prescribing diagnostic tests, but this practice may be the result of patients who demand multiple tests even if some are unnecessary. As technology increases patients with insurance want the newest, most advanced, and expensive treatments that their insurance plan will cover, and oftentimes physicians succumb to their requests. The most expensive treatments are not necessarily the best, and the patient has a duty to participate with the physician in making reasonable and cost-effective choices.

Government

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights that among these are Life, Liberty and the pursuit of Happiness”. The Declaration of Independence seems to juxtapose two rights: the right to equality and the right to liberty. Equalitarians emphasize the former; libertarians, the latter. Equalitarians hold that healthcare is a human right; libertarians hold that healthcare is a commodity. Equalitarianism emphasizes the role of government and is more appealing to democrats; libertarianism emphasizes the role of free market and is more appealing to republicans. The fundamental chiasm between these two contrasting ideologies which are operative in American culture remains an impediment to healthcare reform in the United States.

 

 

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PHARMA Press Release (Feb 12, 2007) http://www.phrma.org/news_room/press_releases/r&d_spending_by_u.s._biopharmaceutical_companies_reaches_a_record_$55.2_billion_in_2006/

Gargon M, Lexchin J. The Cost of Pushing Pills: A New Estimate of Pharmaceutical Promotion Expenditures in the United States, PLoS Med 2008 5(1) http://www.dddmag.com/news-marketing-expenses-twice-research-investment.aspx

Angell M.

 

The Truth About the Drug Companies: How They Deceive Us and What to Do About It, NY: Random House, 1985Prosser H, Soloman A, Walley T. Influences on GP’s Decisions to Prescribe New Drugs-The Importance of Who Says What. Family Practice 2003 Feb 20 (1):61-8.

Bodenheimer T, Bernard L, Casalino L. Primary Care Physicians Should Be Coordinators, Not Gatekeepers, JAMA 1999 June 2; (281):2045-2049.

DeKay ML, Asch DA. Is the Defensive Use of Diagnostic Tests Good for Patients, or Bad? Medical Decision Making 1998 (18):19-28.

Marcinko, D. The Business of Medical Practice: Advanced Profit Maximization Techniques for Savvy Doctors. Springer, 2004.

 

 

Rodriguez-Osorio CA, Dominguez-Cherit G. Medical decision making: paternalism versus patient centered (autonomous) care. Current Opinions in Critical Care 2008 Dec; 14(6):708-13.Steinbrook R. Imposing Personal Responsibility for Health New England Journal of Medicine 2006 Aug 24; (355):653-756.

 

 

 

 

 

Religious Perspectives On Euthanasia

General Christian View

Christians are mostly against euthanasia. The arguments are usually based on the beliefs that life is given by God and that human beings are made in the image of God.

Life is a gift from God.  All life is God-given. Birth and death are part of the life processes which God has created, so we should respect them. Therefore no human being has the authority to take the life of any innocent person, even if that person wants to die 

Human beings are valuable because they are made in God’s image.  Human life possesses an intrinsic dignity and value because it is created by God in his own image for the distinctive destiny of sharing in God’s own life. Saying that God created humankind in his own image doesn’t mean that people actually look like God, but that people have a unique capacity for rational existence that enables them to see what is good and to want what is good. As people develop these abilities they live a life that is as close as possible to God’s life of love. This is a good thing, and life should be preserved so that people can go on doing this.

To propose euthanasia for an individual is to judge that the current life of that individual is not worthwhile. Such a judgement is incompatible with recognising the worth and dignity of the person to be killed.  Therefore arguments based on the quality of life are completely irrelevant. Nor should anyone ask for euthanasia for themselves because no-one has the right to value anyone, even themselves, as worthless.

Position of Catholic Church

Nothing and no one can in any way permit the killing of an innocent human being, whether a fetus or an embryo, an infant or an adult, an old person, or one suffering from an incurable disease, or a person who is dying. Furthermore, no one is permitted to ask for this act of killing, either for himself or herself or for another person entrusted to his or her care, nor can he or she consent to it, either explicitly or implicitly, nor can any authority legitimately recommend or permit such an action. For it is a question of the violation of the divine law, an offense against the dignity of the human person, a crime against life, and an attack on humanity.

It may happen that, by reason of prolonged and barely tolerable pain, for deeply personal or other reasons, people may be led to believe that they can legitimately ask for death or obtain it for others. Although in these cases the guilt of the individual may be reduced or completely absent, nevertheless the error of judgment into which the conscience falls, perhaps in good faith, does not change the nature of this act of killing, which will always be in itself something to be rejected. The pleas of gravely ill people who sometimes ask for death are not to be understood as implying a true desire for euthanasia; in fact, it is almost always a case of an anguished plea for help and love. What a sick person needs, besides medical care, is love, the human and supernatural warmth with which the sick person can and ought to be surrounded by all those close to him or her, parents and children, doctors and nurses.

Position of Protestant Denominations

A number of Protestant denominations have issued statements on euthanasia and physician assisted suicide. Conservative faith groups tend to be most vocal in their opposition. Liberal denominations tend to be more in favor of individual choice.

Anglican: Rowan Williams, the Anglican Archbishop of Canterbury, has stated that although ‘There is a very strong compassionate case’ for physician-assisted dying, the Anglican Church remains opposed to the practice.Some Episcopalians believe it is morally wrong to take human life with medication to relieve suffering caused by incurable illness. Others approve of assisted dying in rare cases.

Episcopal:

Lutheran: As a church we affirm that deliberately destroying life created in the image of God is contrary to our Christian conscience. While this affirmation is clear, we also recognize that responsible health care professionals struggle to choose the lesser evil in ambiguous borderline situations — for example, when pain becomes so unmanageable that life is indistinguishable from torture.

Baptist: Assisted dying violates the sanctity of human life.

Methodist: Methodists generally accept the individual’s freedom of conscience to determine the means and timing of death. Some regional conferences have endorsed the legalization of physician assisted dying.‘Euthanasia’ or ‘mercy-killing’ of a patient by a physician or by anyone else, including the patient himself (suicide) is murder.

Presbyterian Church in America:

United Church of Christ: The Church affirms individual freedom and responsibility. It has not asserted that hastened dying is the Christian position, but the right to choose is a legitimate Christian decision.Pro-choice statements have been made by the United Church of Christ, and the Methodist Church on the US West coast. The Episcopalian, Methodist, and Presbyterian are amongst the most liberal, allowing at least individual decision making in cases of active euthanasia.

Mainline and Liberal Christian denominations:

Position of Judaism

Euthanasia, physician-assisted suicide, and all other types of suicide are almost unanimously condemned in Jewish thought, primarily because it is viewed as taking something (a human life) that belongs to God for “only He who gives life may take it away.” For Judaism, human life is, “created in the image of God.” Although life is considered to be God’s creation and good, human life is related to God in a special way: it is sacred. The sanctity of human life prescribes that, in any situation short of self-defense or martyrdom, human life must be treated as an end in itself. It may thus not be terminated or shortened because of considerations of the patient’s convenience or usefulness, or even sympathy with the suffering of the patient. Thus euthanasia may not be performed either in the interest of the patient or of anyone else.

Jewish law strongly condemns any act that shortens life and treats the killing of a person whom the doctors say will die in any event to be an act of murder. Positive euthanasia is thus ruled out. Even individual autonomy is secondary to the sanctity of human.

Position of Islam

Human life per se is a value to be respected unconditionally. The concept of a life not worth living does not exist in Islam. Justification of taking life to escape suffering is not acceptable in Islam. The Prophet Mohammad said: “Among the nations before you there was a man who got a wound and growing impatient with its pain, he took a knife and cut his hand with it and the blood did not stop until he died. Allah said, ‘My slave hurried to bring death upon himself so I have forbidden him to enter Paradise'” (Qur’an 4:29).

During one of the military campaigns one of the Muslims was killed and the companions of the prophet kept praising his gallantry and efficiency in fighting, but, to their surprise, the Prophet commented, “His lot is hell.” Upon inquiry, the companions found out that the man had been seriously injured so he supported the handle of his sword on the ground and plunged his chest onto its tip, committing suicide.

Patience and endurance are highly regarded and highly rewarded values in Islam. “Those who patiently persevere will truly receive a reward without measure” (Qur’an 39:10). “And bear in patience whatever ill maybe fall you: this, behold, is something to set one’s heart upon” (Qur’an 31:17). When means of preventing or alleviating pain fall short, this spiritual dimension can be very effectively called upon to support the patient who believes that accepting and standing unavoidable pain will be to his/her credit in the hereafter, the real and enduring life.

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[1]  “Declaration on Euthanasia”, The Sacred Congregation for the Doctrine of the Faith, May 5, 1980 http://www.usccb.org/prolife/tdocs/euthanasia.shtml (accessed March 14, 2011)

 [1]  “Religion and Spirituality” The Death with Dignity National Center (DDNC), Oct. 13, 2009 http://euthanasia.procon.org/view.answers.php?questionID=000154 (accessed March 14, 2011)

Is Physician-Assisted Suicide Legal? Is it Ethical?

Physician-Assisted Suicide generally refers to a practice in which the physician gives a patient a prescription for a lethal dose of medication, which the patient intends to use to end his/her life. The physician provides the means for death but it is the patient who must make the conscious decision to use the drug to effect death. For those who take the drug, the physician’s writing a prescription is a necessary step in the process that leads to the patient’s death, but it is not the determinative or even the final step.

 

Euthanasia, on the other hand, generally means that the physician acts directly, for instance by giving a lethal injection, to end a patient’s life. The physician, at the patient’s request, not only provides the means for death but also is the agent of death.

 

 

Why Do Patients Request Physician-Assisted Suicide?

 

         Severe physical and emotional suffering

         Not wanting to live in pain

         Not wanting to be a burden

         Not wanting to be dependent on others for personal care

         Depression

         Hopelessness

         Being tired of life

         Loss of ability to maintain personal relationships

         Problems in interpersonal relationships

         Feelings of isolation and separation

         Financial pressures

 

Some studies suggest that issues of dignity, control and independence motivate requests for PAS more often than unrelieved pain or other symptoms. Patients want to be in control by having a lethal dose of medication on hand in case suffering should become intolerable in the future.

 

Is Physician Assisted Suicide Legal?

As of January 2011, physician-assisted suicide is legal in 3 states (Oregon, Washington and Montana). Other states are considering PAS legislation. The Oregon Death with Dignity Act typically serves as a template for the other states.

To request a prescription for lethal medications, the Oregon Death with Dignity Act requires that a patient must be:

 

·        An adult (18 years of age or older).

·        A resident of Oregon.

·        Capable (defined as able to make and communicate health care decisions), and

·        Diagnosed with a terminal illness that will lead to death within six months.

 

To receive a prescription for lethal medication, according to the Oregon Death with Dignity Act, the following steps must be fulfilled:

 

·        Two oral requests to physician, separated by at least 15 days.

·        Written request, signed in the presence of two witnesses.

·        Confirmation of diagnosis & prognosis by a consulting physician.

·        Confirmation of competency by both prescribing and consulting physician.

·        If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination.

·        The prescribing physician must inform the patient of feasible alternatives to assisted suicide, including comfort care, hospice care, and pain control.

·        The prescribing physician must request, but may not require, the patient to notify his or her next-of-kin of the prescription request.

 

 

Is Physician-Assisted Suicide Ethical?

 

Arguments against Physician-Assisted Suicide

1.      Sanctity of Life: Physician-assisted suicide is morally wrong because it contradicts strong religious and secular traditions against taking human life.

 

2.      Passive vs. Active Distinction: There is an important moral difference between passively “letting die” and actively “killing.” Treatment refusal or withholding treatment equates to letting die (passive) and is justifiable, whereas physician-assisted suicide equates to killing (active) and is not justifiable.

 

3.      Potential for Abuse: Here the argument is that certain groups of people, lacking access to care and support, may be pushed into assisted death. Furthermore, assisted death may become a cost-containment strategy. Burdened family members and health care providers may encourage option of assisted death. To protect against these abuses, it is argued, physician-assisted suicide should remain illegal.

 

4.      Integrity of the Medical Profession: The Hippocratic Oath states, “I will not administer poison to anyone where asked,” and “Be of benefit, or at least do no harm.” Furthermore, major professional groups (AMA, AGS) oppose assisted death. The overall concern is that linking physician-assisted suicide to the practice of medicine could harm the public’s image of the profession.

 

5.      Physicians Make Mistakes: These may include:  errors in diagnosis and prognosis, failure to diagnosis depression, inadequate treatment of pain, etc. Since these types of mistakes may result in unnecessary death, the State has an obligation to protect human lives from these inevitable mistakes.

 

 

Arguments in support of Physician-Assisted Suicide

 

·        Respect for Autonomy: Death with Dignity legislation fulfills the 4 criteria for making autonomous choices: knowledge of the intended procedure, ability to weigh various alternatives, mental competence and lack of coercion. Decisions about time and circumstances of death are very personal. Competent person should have right to choose death.

 

·        Justice: Justice requires that we “treat like cases alike.” Competent, terminally ill patients are allowed to hasten death by refusal of burdensome life-sustaining treatments. For some patients, treatment refusal will not suffice to hasten death; their only option is suicide. Justice requires that we should allow assisted death for such patients.

 

·        Compassion: Some physical and psychological burdens are so severe they cause unbearable suffering that goes beyond pain. It is not always possible to relieve this kind of suffering. Thus physician-assisted suicide may be a compassionate response to unbearable suffering.

 

·        Individual liberty vs. state interest: Though society has strong interest in preserving life, that interest lessens when person is terminally ill and has strong desire to end life. A complete prohibition on assisted death excessively limits personal liberty. Therefore physician-assisted suicide should be allowed in certain cases.

 

·        Openness of discussion: Some would argue that assisted death already occurs, albeit in secret. For example, morphine drips ostensibly used for pain relief may be a covert form of assisted death or euthanasia. That physician-assisted suicide is illegal prevents open discussion, in which patients and physicians could engage. Legalization would promote open discussion.

 

 

The Following Conditions May Justify Physician-Assisted Suicide

 

         Voluntary request by competent patient

 

         Ongoing patient-physician relationship

 

         Mutual and informed decision making by patient and physician

 

         Supportive yet critical and probing environment of decision making

 

         Considered rejection of alternatives

 

         Structured consultation with other parties in medicine

 

         Patient’s expression of a durable preference for death

 

         Unacceptable suffering by the patient

 

Use of a means that is as painless and comfortable as possible

How does one interpret the revision of #58 of the Ethical and Religious Directives for Catholic Health Care Services?

Q & A Regarding the Revision of Directive #58 in the  Ethical and Religious Directives for Catholic Health Care Services

Why did the bishops revise Directive #58 now?

The United States Conference of Catholic Bishops had extensively rewritten the Ethical and Religious Directives for Catholic Health Care Services (ERDs) in 1994 and last revised the document in 2001.  At that time, the Holy See had not spoken regarding the morality of providing medically assisted nutrition and hydration (MANH) to patients in a persistent vegetative state (PVS).  The Introduction to Part Five of the ERDs at that time explained that there was a “necessary distinction between questions already resolved by the magisterium and those requiring further reflection, as for example, the morality of withdrawing MANH from a person who is in the condition that is recognized by physicians as the ‘persistent vegetative state.’”  However, in March 2004, Pope John Paul II addressed this issue and in August 2007, the Congregation for the Doctrine of the Faith issued a clarifying document on the issue. Therefore, the Introduction to Part Five and Directive #58 have been revised in light of these statements.

Does Directive #58 now require that all patients who cannot take food and fluids by mouth receive MANH?

No, it does not. What the revised Directive does say is that patients who both can be fed and hydrated and who would benefit from being provided with food and water, even by artificial means, should, as a general rule, be fed and hydrated. In other words, there is a general moral obligation to provide patients with nutrition and hydration.

This general obligation applies as well to patients who are in a chronic condition and who could continue to live if they are provided with nutrition and hydration. This part of the Directive focuses particularly on patients in a persistent vegetative state and embodies the teaching of Pope John Paul II contained in his 2004 address as well as the statement made by the Congregation for the Doctrine of the Faith in September 2007.

However, the Directive also notes that there are exceptions to this general obligation:

  • With regard to dying patients, nutrition and hydration may be deemed excessively burdensome to the patient or may provide little or no benefit in which case they become morally optional.
  • With regard to patients in a chronic condition, for example, a patient in a persistent vegetative state, the obligation could also become morally optional if providing nutrition and hydration cannot be expected to prolong life or become excessively burdensome or cause significant physical discomfort (e.g., medical complications resulting from the use of medically administered nutrition and hydration).

So while the Directive emphasizes the general moral obligation to provide nutrition and hydration, even when administered medically, it also recognizes that this obligation is not absolute and that the use of these measures must be assessed with regard to their benefits and burdens to the patient.

Must all patients in a persistent vegetative state (PVS) receive MANH?

The revised Directive #58 makes two assertions in this regard:  (1) that in principle there is an obligation to provide food and water to patients, and that this includes MANH for those who cannot take food and water orally and (2) that MANH becomes “morally optional” when (a) they can no longer prolong life or (b) when they become “excessively burdensome for the patient.”  This judgment is a clinical judgment between the patient (or surrogate) and the physician.  Among the clinical elements that need to be assessed are: the indications and contraindications of tube feeding for this particular patient and understanding potential medical complications that might occur. In the actual circumstances facing a given patient, MANH might not be appropriate. The Directive insists, however, that it must be the MANH that is considered burdensome and not the PVS condition itself. The belief that a patient is never likely to regain consciousness is not in itself a sufficient reason for withdrawing MANH.

Will Directive #58 significantly increase the number of people receiving MANH?

Although at this point in time, the answer to this question is rather speculative, it is not likely that Directive #58 will significantly increase the number of people on MANH.  The Directive merely puts into the ERDs a teaching that has been in effect for several years.  There is no indication of a significant increase in MANH for PVS patients in either 2004 or 2007.

Will a Catholic hospital initiate MANH against the patient’s wishes?

No hospital or physician, including a Catholic hospital or physician, may ever initiate a non-emergency invasive procedure, such as inserting percutaneous endoscopic gastrostomy (PEG) tube, without the permission of the patient or his or her surrogate. This could be considered an affront to human dignity and, in addition, could give rise to legal proceedings.

Does the new Directive #58 mean that Catholic health care facilities will not honor a patient’s advance directive?

No, it does not. In the vast majority of cases, patients’ advance directives will be honored. As previously noted, MANH at the end of life may be medically inappropriate. There may be the occasional situation, such as some patients in a persistent vegetative state, when what the patient is requesting through his or her advance directive is not consistent with the moral teaching of the Church. In these few cases, the Catholic health care facility would not be able to comply.

But this is nothing new. Directives #28 already notes that “the free and informed health care decision of the person or the person’s surrogate is to be followed so long as it does not contradict Catholic principles.” And Directive #59 echoes this: “The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.” In those rare instances when the Catholic health care organization is not able to comply with an advance directive, it is not permitted to impose MANH upon the patient contrary to the patient’s wishes as they are expressed in the advance directive or by the patient’s surrogate. This could give rise to legal proceedings. Instead, other options would need to be explored.

Does Directive #58 place Catholic health care facilities in conflict with Federal and/or state laws?

Directive #58 does not appear in and of itself to conflict with any federal or state law.  Whether the application of Directive #58 will conflict with a given state law depends on the circumstances of each individual case.

Does the revision of Directive #58 change the standard of care, often described as ordinary and extraordinary means, as traditionally used by Catholics?

Part of the long moral tradition of the Catholic Church regarding end of life issues has been the moral distinction between “ordinary” and “extraordinary” means.  As shown in Directives #56 and #57, this distinction involves an assessment of the burdens and benefits of a treatment.  Those means of preserving life are proportionate or “ordinary” and therefore obligatory when “in the judgment of the patient [they] offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community” (Directive #56).  Those means of preserving life are disproportionate or “extraordinary” and therefore nor morally obligatory when “in the judgment of the patient [they] do not offer a reasonable hope of benefit or entail an excessive burden or impose excessive expense on the family or the community” (Directive #57). The language of Directive #58 continues to allow for this burden/benefit assessment with regard to MANH.  However, by means of the Directive, the Catholic bishops also maintain that it must be the MANH, which is considered excessively burdensome, and not the PVS condition itself.

Please note: This document reflects the views of CHA ethics staff and is not intended to be an official interpretation of Directive #58.

Truth-Telling in Medicine: Cultural Dimension

Question:  My mom, who has lived in a small farm village in rural China all her life, became severely ill, and I the daughter decide to send her to the United States to find out what’s wrong with her. I take mom to a specialist and accompany her for all the tests. The diagnostic tests show that mom has terminal cancer and that no effective treatment is available. I insist that the doctor not tell mom because I fear the bad news would destroy her. Is it ethical to withhold information from a patient? Is a patient’s cultural background an important factor in truth telling?

In our August 2009 blog we discussed truth telling in medicine. We suggested that debates about truth telling are complex but they usually come down to disagreements about the limits of paternalism and the proper balance between the physician’s duty of beneficience and the patient’s right of autonomy. An analogy to paternalism is the relationship between a father and his child. A father acts beneficently (i.e. in accordance with his conception of the best interests of his child) when he makes decisions relating to his child’s welfare without consulting him. In like manner, realizing that he has superior training, knowledge and insight in health matters, a physician is in an authoritative position – analogous to a father – to determine a patient’s best interests. He acts paternalistically – and in his mind beneficently – when he makes healthcare decisions unilaterally without soliciting the input of his patients.

The case study above is an example of paternalism. In a reversal of roles, the daughter is acting paternalistically towards her mother when she asks the physician to withhold the diagnosis of terminal cancer because she fears that the bad news would destroy her mother. If the physician were to comply with the daughter’s wishes, he would be participating in the paternalistic behavior of the daughter. What are the limits of paternalism? What is the proper balance between the physician’s duty of beneficence and the patient’s right of autonomy? The two characters in our case study are Chinese. Does country of origin impact truth telling?

We will discuss the dominant traditional attitudes towards truth telling in China, Japan, Lebanon and the United States. China and Japan have a strong paternalistic tradition toward truth telling. Lebanon is going through a transition from a tradition of paternalism to a modern embrace of the principle of patient autonomy. And in the United States the principle of patient autonomy rules over the tradition of paternalism.

A paternalistic attitude toward truth telling in medicine is dominant in China[i]. Influenced by the philosophies of Confucianism and Taoism, the tradition of Chinese ethics emphasizes the good behavior of the practicing physician rather than a system of principles and rules. In Chinese tradition a good physician is paternalistic. Accordingly, he would not disclose to a patient that he has terminal cancer; rather he would tell the spouse or other close family member.  In China families want to hear the news first.  They care for their sick at home, rather than in institutions. Family bonds are so strong in China that they would rather bear the psychological shock of the bad news of a terminal diagnosis rather than share it with their loved one. They want their dear family member to remain hopeful and optimistic. And for their part, patients prefer not to be informed of a terminal illness. They willingly relinquish their right to autonomy and let family members make health care decisions for them.

Japan has a similar paternalistic tradition[ii]. In 1995 the Ministry of Health and Welfare reported the results of a truth telling survey in Japan. It found that only 30% of patients were told they have terminal cancer and that 67% of families felt satisfied that the diagnosis was withheld from them. In Japan physicians usually disclose a terminal diagnosis to family members, not the patient. Like the Chinese, the Japanese feel that disclosure of such bad news brings loss of hope and unwanted emotional distress which may lead to isolation, depression and even suicide.  There are strong authoritarian and paternalistic elements in the Japanese healthcare system. For example, even during routine check-ups, physicians often do not fully explain to the patient the reason for a planned examination and don’t disclose test results directly to them. Drugs are often prescribed with their labels removed. And paternalism is sanctioned by the courts. In 1995 the Japanese Supreme Court ruled that physicians are not obliged to inform cancer patients of the nature of their condition, upholding earlier rulings by district and high courts.

Truth telling in Lebanon demonstrates a transition from a tradition of paternalism to a modern embrace of the principle of patient autonomy in developed countries. There are several interesting findings in a 1999 survey of 498 patients with terminal cancer in Lebanon[iii]. In this survey the majority of physicians stated they would opt for what is thought to be the culturally accepted norm, viz. withholding disclosure of a terminal illness from the patient and rather telling the family. However, the majority of patients prefer disclosure. The same survey found that patient preference for disclosure of a cancer diagnosis correlates highly with younger age, better education and better professional achievement. The attitude toward truth telling in Lebanon suggests a transition from the long tradition of physician paternalism in many cultures to the modern embrace of patient autonomy.

Preference for concealment appears to be the prevalent attitude in traditional cultures where paternalistic-beneficent attitudes of physicians predominate over respect for the autonomy rights of patients. A crucial factor responsible for the transition from paternalism to autonomy is education. People who have little access to information have a rudimentary understanding of an illness, its treatment, diagnosis and prognosis. However, when people become educated and have access to good information, they become more aware of the scientific basis of the illness and the limits of modern medicine. And as people become more educated, they refuse to accept the authority of paternalism. They prefer to make decisions for themselves and assert their autonomy.

In the United States, ethical issues in medicine have evolved around the principle of patient autonomy. This principle asserts the rights of patients to be informed of their diagnosis, prognosis and the risks and benefits of therapies, and to be allowed to make informed decisions about treatments and withholding resuscitation. In the United States autonomy has become a moral absolute. In this respect, Pellegrino[iv] lists several reasons, including improved education of the public, a strong tradition of privacy rights and personal liberty, a distrust of authority, the possibilities of medical technology and the loosening of family and community identification in the United States. Pellegrino then proposes that the fundamental issue in the controversy over truth telling is not a culturally bound phenomenon, but a universal phenomenon of conflict between traditional values and the contemporary Anglo-American concept of autonomy. This may be true but it’s important to highlight the importance of education in the transition from paternalism which is dominant in traditional cultures to autonomy which has trumped beneficence in modern cultures.

Back to our case study, was the daughter right to urge the doctor to withhold the diagnosis of terminal cancer from her mom because she feared that the bad news would destroy her? And is their Chinese heritage an important factor in truth telling? As we discussed above, in the traditional agrarian Chinese culture it was common practice for families to shield their loved ones from learning of a terminal diagnosis, and indeed the patient prefers they do so. In traditional Chinese culture patients expected that family members would make healthcare decisions for them.

As we discussed in our August 2009 blog, there are two main situations in which it is justified to withhold the truth from a patient: (1) if the physician has compelling evidence that disclosure will cause real and predictable harm or (2) if the patient states an informed preference not to be told the truth. In our case study it would be difficult to fault the daughter who wants to withhold the bad news from her mother since that position is common practice in agrarian China. In that tradition a family shields their loved one from the shock of a terminal diagnosis and indeed the loved one prefers not to be told. Thus the daughter has compelling cultural evidence that disclosure would cause real and predictable harm to her mother and that her mother would prefer not to be told the truth. Thus her request to the physician may be justifiable.

Would the physician be right to comply with the daughter’s request? As we discussed the principle of patient autonomy usually trumps paternalism in American culture. From the physician’s perspective he has no clear evidence of predictable harm and he does not have the patient’s informed consent not to be told the truth. Yet if he learns of the Chinese agrarian tradition, he would be sympathetic to the daughter’s request. Clearly he should take the time to have a serious discussion with the daughter. He should evaluate suicide risk. If the mother has a history of serious depression and the daughter strongly suspects that the bad news would put her mother in real jeopardy of suicide, he would have reason to withhold the truth from his patient. Barring suicide risk he may want to present some reasons why disclosure may help her mother. Above all, he should stress that the impact of the truth on patients depends largely on how it is told. There is no need to be blunt. Patient autonomy can be served by offering the patient “the opportunity to learn the truth, at whatever level of detail the patient desires”[v].


[i] Side Li & Ha-Ling Chou. Communication with the cancer patient in China, Annals of the New York Academy of Sciences, 1997; 809: 243-248

[ii] Yosuke Uchitomi & Shigeto Yamawaki. Truth-telling practice in cancer care in Japan, Annals of the New York Academy of Sciences, 1997; 809: 290-299

[iii] Salim M. Adib & Ghassan N. Hamadek, Attitudes of the Lebanese public regarding disclosure of serious illness, Journal of Medical Ethics, 1999; 25: 399-403

[iv] Edmund Pellegrino, Is truth telling to patients a cultural artifact?, Journal of the American Medical Association, 1992; 268: 1734-5

[v] Benjamin Freedman “Offering the Truth: One Ethical Approach to the Uninformed Cancer Patient”, Archives of Internal Medicine 153 (8 March 1993), 572-76

Has the Catholic Church changed its position on artificial hydration and nutrition?

In December 2009 the U. S. Bishops amended  the Introduction to Part 5 and directive #58 of the Ethical and Religious Directives for Catholic Health Care Services. The following are the new additions:

Introduction Part 5:  The Church’s teaching authority has addressed the moral issues concerning medically assisted nutrition and hydration. We are guided on this issue by Catholic teaching against euthanasia, which is “an action or an omission which of itself or by intention causes death, in order that all suffering may in this way be eliminated.” While medically assisted nutrition and hydration are not morally obligatory in certain cases, these forms of basic care should in principle be provided to all patients who need them, including patients diagnosed as being in a “persistent vegetative state (PVS), because even the most severely debilitated and helpless patient retains the full dignity of a human person and must receive ordinary and proportionate care.

Directive # 58: In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care. Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be “excessively burdensome for the patient or [would] cause significant physical discomfort, for example resulting from complications in the use of the means employed.” For instance, as a patient draws close to inevitable death from an underlying progressive and fatal condition, certain measures to provide nutrition and hydration may become excessively burdensome and therefore not obligatory in light of their limited ability to prolong life or provide comfort.

Question: Can a new procedure called the NovaSure Ablation System be utilized in a Catholic health care setting?

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.

 


[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.

Prenatal Diagnosis & Testing: There’s been a lot of talk about genetic testing. What is it? Are there any ethical and religious issues associated with it?

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

Question: When a loved one is dying is there any type of ritual that can be performed to help the patient realize that he/she is not alone?

     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.

 


 

[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.