When To Say Goodbye: Respirators and Life Support Systems

The Rules of Ventilators

The revelation awaits an appointed time…Though it linger, wait for it;
it will certainly come and will not delay. Habakkuk 2:3

The continuation of life when it is no longer naturally possible is conducted in many medical situations. It is no longer an idea of science fiction that a machine can maintain the blood flow through a human body or keep lungs breathing.

Although life support can mean anything from medications to machinery, the most standard types of life support systems are those that support respiratory, cardiovascular, gastrointestinal and renal system (bladder, kidneys and ureter) functions of the human body. The scientific possibility of sustaining life conditions may often well exceed the body’s ability to physiologically respond in ways we categorize as “living,” such as cognitive thinking and communicating.

Enter the social, religious and ethical debates surrounding the human right to life with dignity and the criteria by which we agree to judge these standards.

My Family’s Experience

My family’s experience with life support was not pleasant. From the moment our mother entered the hospital emergency room, it was clear to us that the caregivers were committed to a passive form of euthanasia. From the outset they only wanted one outcome – the removal of costly life support equipment.

In retrospect, it seemed morally and ethically easier for a medical organization to shift this decision onto us, the family. In what can only be called an act of financial triage, the hospitals and government do not want to spend any more money than necessary to keep a patient alive. Life is very expensive in many circumstances. Whether they are for-profit or not-for-profit, hospitals are money-making institutions. Otherwise, they simply would not exist.

When it became clear that our mother did not have a do not resuscitate order (also called a DNR), the medical staff presented my sister and myself with the requisite paperwork to terminate our mother’s life support. We felt that they callously spoke to us, in her presence, about the DNR and her dying condition. The nurses commented that keeping her alive was cruel and that “you would not want to live like that.”

When I turned and looked at the face of my mother, I saw a single tear come from her eye. As they wiped it away, nurses assured us that this was merely bodily fluid seeping. She could not hear us, they insisted.

The room in the intensive care unit was kept very cold. The experience was traumatic, to say the least. Our tribulation is over and our mother is with God, but we wanted to present a comprehensive resource on end-of-life issues for others who may encounter similar circumstances.

The Laws Governing Life-Sustaining Treatments

A great deal of debate and analysis has been given to the principles and practice of life-sustaining treatments. Dr. Gordon D. Rubenfeld examines these issues quite comprehensively and effectively in a 2004 article on the matter. Discussions on the Internet go back and forth on the end-of-life debate under the new ObamaCare Act (The Affordable Health Care Act).

The Affordable Health Care Act

Long-term insurance care is not covered under ObamaCare. It is a coverage which does not require mandatory acceptance and you still must meet predetermined criteria under the new laws to qualify. This puts long-term coverage, practically speaking, out of reach to millions of Americans.

Medicare

Medicare currently covers only medically necessary care and focuses primarily on acute care – not long-term issues. (For more information on Medicare coverage, review this comprehensive publication.) Furthermore, Medicare is focused on issues that are expected to improve. This may change due to the settlement of a lawsuit in 2013, which focused on the Medicare Improvement Standard.

Medicare will not pay the largest parts of long-term care services or personal care – such as bathing and supervision. Affordability, in many cases, becomes an absolutely critical aspect of the decision-making process and many online resources cover affordability issues.

Medicare will usually pay for a short stay in an approved skilled nursing facility, under the following conditions:

You have had a recent previous hospital stay of at least three days;
You are admitted to a Medicare-certified nursing facility within 30 days of your prior hospital stay, and;
You require skilled care, such as specific nursing services, physical therapy, or other types of therapy.

If you meet all these conditions, Medicare will pay for some of your costs for up to 100 days. For the first 20 days, Medicare pays 100 percent of your costs. For days 21 through 100, you pay your own expenses up to $140.00 per day (as of 2013), and Medicare pays any balance.You pay 100 percent of costs for each day you stay in a skilled nursing facility after day 100.

Medicare will pay for hospice care if you have a terminal illness and are not expected to live more than six months. When you qualify for hospice care, Medicare covers the costs of drugs used to manage the illness and provide relief from pain, provide support services from a Medicare-approved services provider and certain other services Medicare normally does not cover, such as grief counseling.

Legal Background

The concept of withdrawing life sustaining equipment in the case of a person in a permanently vegetative state was first significantly litigated in In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976).

In that matter, the New Jersey State Supreme Court upheld the rights of the parents of Karen Ann Quinlan, an unconscious individual under guardianship, to remove Karen from artificial ventilation.

In the facts of that case, Karen Ann Quinlan, who was 21 years of age in 1975, was determined to be in a persistent vegetative state following an incident involving alcohol and tranquilizers. Her parents, specifically her father, sought to remove her from an artificial ventilator, which was providing her body’s respiratory function. Karen’s doctors refused.

The case ultimately proceeded to the New Jersey Supreme Court where Quinlan’s father requested, as a parent, to have his daughter’s life support equipment removed based on the U.S. Constitution’s First Amendment, under the auspices of the right to religious freedom.

The New Jersey Supreme Court determined, however, that the issue of an individual’s right to privacy was the salient issue in the case. Although not expressly enumerated by the U.S. Constitution, the U.S. Supreme Court had held that some areas of the right to privacy are not only recognized, but guaranteed by the Constitution. In cases such as Griswold v. Connecticut, 381 U.S. 479 (1965) (right to marital privacy) and Roe v. Wade, 410 U.S. 113 (1973) (right to abortion), the U.S. Supreme Court found a presumed right to refuse medical treatment in certain situations.

Relying on these rulings, the New Jersey Supreme Court ruled that, “Karen’s right of privacy may be asserted on her behalf by her guardian under the peculiar circumstances here present.” Balancing the statesparens patriae interest in preserving life against Karen’s constitutional right to privacy, the court held:

We have no doubt, in these unhappy circumstances, that if Karen were herself miraculously lucid for an interval (not altering the existing prognosis of the condition to which she would soon return) and perceptive of her irreversible condition, she could effectively decide upon discontinuance of the life-support apparatus, even if it meant the prospect of natural death. See 70 N.J. at 39.

The respirators were ultimately removed following a hospital ethics committee declaration that Karen would not recover from her persistent vegetative state. She continued to live and breathe without the assistance of her respirator until 1985, when she succumbed to multiple infections.

In an eye-opening book Karen Ann: The Quinlans Tell Their Story (New York: Doubleday and Co., 1977) the Quinlans explained that their decision not to subsequently remove Karen from artificial nutrition and hydration after the respirator was removed was based on ethical issues.

In 1990, the Supreme Court visited this issue more directly in Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990). In a 5-4 decision, the Supreme Court ruled in favor of the State of Missouri, finding it was acceptable for a state to require “clear and convincing” evidence of a patient’s wishes for the removal of life support. Legal documents such as a DNR and Advance Directive would serve as adequate legal presumption of such evidence.

The Patient Self-Determination Act

Eager to legislate in the matter following the Cruzan decision, but far from standing firmly on any particular position, Congress enacted the Patient Self-Determination Act (PSDA) in 1991.

The PSDA requires hospitals to honor a person’s pre-stated decision with regard to their health care. Specifically, patients are to be provided with written notice of their decision-making rights upon admittance to a health care facility. Individuals must also be informed of the policies regarding advance health care directives in their state and the treatment facility which they have been admitted. Care centers are required to determine if a patient has a health care directive. If they do, the facility must make it part of the patient’s records. Facilities must educate their doctors and staff about advance health care directives. Based on an individual’s written decision, the facilities cannot discriminate during admissions decisions.

Advance Medical Directives

An advance medical directive is a document that many states accept as appointing a medical agent for the person executing the document, should they not be able to make medical decisions for themselves. This is a springing, durable, power of attorney. Springing, meaning that it “springs” into effect in the event of a potentially life-altering condition.

Most powers of attorney fail, or become invalid, when the person who gave the power of attorney loses competence or capacity. Durable powers of attorney often recite certain terms to make sure the person who signed it understood the power they were giving when they signed the document.

In some cases, an advance medical directive will designate certain decisions that an agent may make on behalf of the incapacitated person. Some advance medical directives even allow the agent to make a life-sustaining equipment removal decision. In this case, there is no need for a do not resuscitate order, because the agent has that power, de facto.

In other cases, the power of attorney may enumerate various decisions that the agent can allow.

A power of attorney is only limited by the creativity of the drafting attorney and certain principles of public policy, which limit decisions to legal activities and certain other commonsense restrictions.

Do Not Resuscitate Orders

An order of do not resuscitate (DNR) is a legal document created by an individual, usually with the assistance of legal personnel, which directs medical care professionals to refrain from CPR or advanced cardiac life support (ACLS) measures in the event that the person stops breathing or his heart stops beating. Legally, a DNR is a very simple directive. It may be part of an advance medical directive.

Much confusion arises in the area of DNRs because the powers to determine the removal of life-sustaining equipment are often a part of an advance medical directive which controls other life-sustaining medicine applications in the form of a durable power of attorney, as set forth above.

A person with an advance medical directive may not need a DNR unless they wish to remove this particular decision from the authority of their agent and they want to designate that the treatment be removed. That is the only time you need both documents when an effective advance medical directive is in place.

A DNR is considered precatory in nature; it is a document that expresses the wishes of an individual, but is not per se legally enforceable, although it is often considered the best expression of an individual’s intent when they cannot speak for themselves. In this regard, DNRs are often honored to the best ability of the medical and legal professional communities.

If a DNR is in contravention to public policy, it will not be honored. If a DNR requests that proactive measures be taken to cause the death of an individual – such as the administration of a large dose of sedatives, for example – the precatory part comes into play.

The phrase “Do Not Resuscitate” is often criticized due to the fact that it sounds as though something is being done to a person to cause them to die. In fact, there is a high morbidity rate among patients who require advanced cardiovascular life support (ACLS) both in and outside of hospitals.

In the United States, cardiopulmonary resuscitation (CPR) and ACLS will not be provided in the presence of a written DNR. Many states and commonwealths do not recognize a DNR in emergent pre-hospital conditions, such as when an ambulance arrives on the scene of an accident, due to legality and practicality aspects of enforcing the document in such extreme, time-sensitive situations.

The Power of Patient Medical Directives

A popular 1997 study published in the Journal of American Geriatrics Society reveals how health care providers respond to the documented and written wishes of patients during medical care. The study, which was conducted at five learning hospitals during a two-year period, examined the medical files of 4,804 patients. From that group, only 688 directives were collected from 569 patients.

Sixty-six percent of these documents were durable powers of attorney, 31 percent were standard living wills and three percent were other forms of written instructions. Ninety documents (13 percent) provided additional instructions for medical care beyond naming a proxy or stating the preferences of a standard living will. Thirty-six contained specific instructions about the use of life-sustaining medical treatment, and 22 of these directed forgoing life-sustaining treatment in the patient’s current situation. For these, the treatment course was consistent with the instruction for nine patients. In two cases, patients may have changed an inconsistent directive after discussion with hospital staff.

The study concluded that “advance directives placed in the medical records of seriously ill patients often did not guide medical decision-making beyond naming a health care proxy or documenting general preferences in a standard living will format. Even when specific instructions were present, care was potentially inconsistent in half the cases.”

Resources

Many legal resources are available to assist you with interpreting an advance health care document, including:

Religious Views on Active and Passive Euthanasia

A number of resources examine the theological approaches to active and passive assistance in death and dying. Below is a brief summary of several popular beliefs, according to popular religion.

Christianity

Christianity must be broken into two sections:

Catholicism – The Roman Catholic Church’s official position on the topic of euthanasia is discussed in the 1985 publication, The Declaration on Euthanasia.The Roman Catholic position is that euthanasia is a crime against both God and life itself.Official pronouncements by the Church on active euthanasia are in strong opposition.They are amenable to allowing the dying to proceed without medical intervention when such intervention would be extraordinary or disproportionate.

Protestantism – Many protestant denominations vary on their position regarding euthanasia, whether active or passive. Liberal protestant denominations have been more open to the concept in recent years, although they largely avoid taking demonstrative stands on the subject. Evangelical denominations have mirrored the Roman Catholic “sanctity of life” approach.

Hinduism

The Hindu faith has espoused several approaches to the topic. A majority of Hindus may say that helping the body and soul leave this world at an unnatural time is a request that should be denied by a medical professional. Granting such a request will harm the karma of the patient and those assisting. Because of the death, any action in this direction would violate the principle of nonviolence.

The concept of ahimsa, or causing no harm, is another Hindu approach to this situation and one which lends itself to denying the practice altogether. Finally, some Hindus believe that assisting in the ending of suffering is a good act that has positive moral implications.

Islam

Those of the Muslim faith are almost unilaterally against the taking of human life. Because life is given by Allah, Allah chooses the span of each life, regardless of the circumstances. Human interference in this process is viewed as improper.

Judaism

Judaism firmly believes that only God has the right to extinguish life, and that life, like death, is an involuntary process. A strong movement supports the concept that impediments to natural death can be removed after properly considering the conditions for doing so.

Jainism

Mahavira Varadhmana allows a follower of Jainism (a sharavak) full authority to put an end to his or her life if the sharavak feels that such a stage is near. Liberation from the cycles of lives (moksha) is the primary objective in the religion.

Buddhism

Buddhist theology espouses various views about euthanasia. Buddhist monks (bhikkhu) adhere to a strict code that directly addresses the concept (Patimokkha):

“Should any bhikkhu intentionally deprive a human being of life, or search for an assassin for him, or praise the advantages of death, or incite him to die (thus): ‘My good man, what use is this wretched, miserable life to you? Death would be better for you than life,’ or with such an idea in mind, such a purpose in mind, should in various ways praise the advantages of death or incite him to die, he also is defeated and no longer in communion.”

In a 1996 interview, the Dalai Lama voiced support for euthanasia, in exceptional circumstances, “best judged on a case-by-case basis.” This view has found support in the Buddhist approach, but again, only in the most exceptional of circumstances.

Shinto

Due in part to a number of high-profile cases which occurred in Japan, where the population is predominantly Shinto, discussion on the topic of euthanasia has been recently examined. According to an insightful article published by the Yamaguchi School of Medicine, the topic of euthanasia in Japanese culture was explored and determined mixed results. The study found that 25 percent of combined Shinto and Buddhist organizations in the country support voluntary active euthanasia. In Shinto, however, prolonging life artificially is a disgraceful act.

Consider All Options

Hopefully, these resources provide a good starting point for the thousands of questions you and your loved ones may have regarding end-of-life decisions.

Remember, when you are placed in this very difficult position, you do not need to act quickly. Take your time and consider all the available options. Talk with your religious advisor. Examine what your church leaders have written on the matter. Speak with the hospital’s pro-life advisor or find an advisor online. Consult your attorney.

Above all, pray about the situation. God is loving and providing. He will answer your prayers.

When the doctors came in and told us that they would “not do anything more for our mother,” I prayed. In silent prayer, I asked God for a sign. I asked that, if we were to let her go, to please drop her blood pressure significantly as a sign.

In the moments after I finished my prayer, my mother’s blood pressure dropped 50 points and remained down. The nurse ran in to see what had happened. Mom had been very stable up until that time. We knew our journey had come to an end. We knew we had to part.

We said goodbye at 9:09 p.m. that night.

God gave me an unusual answer. Had I been stronger, had I known what I know now, I would have made a very different choice. It is something I live with every day. I am telling the world my story, my experience, so that you can learn that you have choices. May you never be put through the heartbreak that I experienced.

Remember, you must have integrity. There are two questions you must ask:

Have they told you everything? Ask about anything and everything.
Who is this expedient for? If the answer you get is for anyone or everyone other than or in addition to the patient, it is the wrong answer. Your actions should only benefit the patient! That is the only person who matters.

While each season of life will always have its ups and downs – and in everyone’s life there is a purpose – you can always choose to do the right things. Above all, be fearless. You can tell the doctors what to do. You can tell them “no” when they tell you otherwise.

You have a choice.