Surrogate decision-maker
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A surrogate decision maker, also known as a
health care proxy In the field of medicine, a healthcare proxy (commonly referred to as HCP) is a document (legal instrument) with which a patient (primary individual) appoints an agent to legally make healthcare decisions on behalf of the patient, when the patient ...
or as agents, is an advocate for incompetent
patient A patient is any recipient of health care services that are performed by healthcare professionals. The patient is most often ill or injured and in need of treatment by a physician, nurse, optometrist, dentist, veterinarian, or other hea ...
s. If a patient is unable to make decisions for themselves about personal care, some agent must make decisions for them. If there is a durable
power of attorney A power of attorney (POA) or letter of attorney is a written authorization to represent or act on another's behalf in private affairs (which may be financial or regarding health and welfare), business, or some other legal matter. The person auth ...
for health care, the agent appointed by that document is authorized to make health care decisions within the scope of authority granted by the document. If people have court-appointed guardians with authority to make health care decisions, the guardian is the authorized surrogate.


Background

At the 1991 Annual Meeting of the
American Medical Association The American Medical Association (AMA) is a professional association and lobbying group of physicians and medical students. Founded in 1847, it is headquartered in Chicago, Illinois. Membership was approximately 240,000 in 2016. The AMA's sta ...
, the AMA adopted the report of the Council on Ethical and Judicial Affairs known as, "Decisions to Forgo Life-Sustaining Treatment for Incompetent Patients." The recommendations of the report were the basis for amendments to Opinion 2.20 known as, "Withholding or Withdrawing Life-Sustaining Medical Treatment." The report itself provides guidelines for
physician A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
s who may have to identify a surrogate decision maker, assist a surrogate (
proxy Proxy may refer to: * Proxy or agent (law), a substitute authorized to act for another entity or a document which authorizes the agent so to act * Proxy (climate), a measured variable used to infer the value of a variable of interest in climate ...
) in making decisions for
incompetent Incompetence is the inability to perform; lack of competence; ineptitude. Aspects of incompetence include: *Administrative incompetence, dysfunctional administrative behaviors that hinder attainment of organization goals *Incompetence (law), a p ...
patients, and resolve conflicts that may arise between decision makers, or between the decision maker's choice and medically appropriate options. Since the first incorporation of these guidelines to the AMA Code of Medical Ethics, the council has deferred to Opinion 2.20 to address inquiries involving surrogate decision making, even though the guidelines presented in this Opinion refer only to decisions made near the end of life. With continued discussion concerning health care preferences for all patients, including those who are incompetent, greater options have been made available to secure health care directives. The involvement of third parties in a patient's
health Health, according to the World Health Organization, is "a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity".World Health Organization. (2006)''Constitution of the World Health Organiza ...
becomes more likely in decisions that may occur in instances other than the end of life. In addition, the council recognizes that there is a spectrum of decision-making capacity ranging from immaturity, to mental illness, to serious brain damage, and that health care decisions often must be made for individuals with diminished decisional faculties over extended periods of time. The council offers the following report to expand on its previous guidelines and to identify features related to a meaningful and effective
physician A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
-proxy relationship. The report begins by defining a number of terms related to health care directives before presenting theoretical frameworks used in making decisions for incompetent patients. It then provides a protocol for identifying a surrogate decision maker as well as guidance for physicians who may run into conflict either assisting the surrogate in coming to a decision or with the decision itself. Finally, the report offers guidelines for nurturing an effective
physician A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
-proxy relationship. A study was conducted aiming to describe physicians' experiences with surrogate communication and decision making for hospitalized adults. It was concluded that physician-surrogate decision making may be enhanced if patients discuss their preferences in advance and if physician contact with surrogate decision makers is facilitated. A further study by the same group of researchers was conducted exploring the degree to which physicians report reliance on patient preferences when making medical decisions for hospitalized patients lacking decisional capacity. Although a majority of physicians identified patient preferences as the most important general ethical guideline for surrogate decision-making, they relied on a variety of factors when making treatment decisions for a patient lacking decisional capacity.


Designating a surrogate decision maker

The Patient Self-Determination Act guarantees a patient's right to formally designate a surrogate to make treatment decisions for the patient if the patient becomes unable to make their own decisions. A surrogate decision-maker, or durable power of attorney for health care (DPA/HC), must be documented. A common form that is valid in 40 states is
Five Wishes Five Wishes is a United States advance directive created by the non-profit organization Aging with Dignity. It has been described as the "living will with a heart and soul". History Five Wishes was originally introduced in 1996 as a Florida-only ...
. When filing an
advance directive An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal document in which a person specifies what actions should be taken for their health if they are no ...
, an alternate health care agent should be identified. The surrogate decision maker must be a trusted individual that is able to make crucial decisions on behalf of the advance directive client. The advance directive should also indicate specific instructions for when a patient is incapacitated. Treatment options should be examined and discussed with a physician, attorney, and family members. Common instructions might include instruction surrounding the use of a
feeding tube Eating (also known as consuming) is the ingestion of food, typically to provide a heterotrophic organism with energy and to allow for growth. Animals and other heterotrophs must eat in order to survive — carnivores eat other animals, herbi ...
. The client's inclinations must be clearly written, and the health care agent should fully understand the instructions given as well as how to execute them. When drafting a
health care proxy In the field of medicine, a healthcare proxy (commonly referred to as HCP) is a document (legal instrument) with which a patient (primary individual) appoints an agent to legally make healthcare decisions on behalf of the patient, when the patient ...
, it is best to consult a
physician A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
and attorney. The forms are available through
lawyers A lawyer is a person who practices law. The role of a lawyer varies greatly across different legal jurisdictions. A lawyer can be classified as an advocate, attorney, barrister, canon lawyer, civil law notary, counsel, counselor, solicitor, ...
,
hospitals A hospital is a health care institution providing patient treatment with specialized health science and auxiliary healthcare staff and medical equipment. The best-known type of hospital is the general hospital, which typically has an emerge ...
, and websites dedicated to health care ethics. The proxy must identify the client and the client's agent, also including all contact information. The advance directive must state that the designated agent has authority to make health care decisions on the patient's behalf and what limitations, if any, are imposed on the agent's authority. The document should clearly state that the agent's authority begins only when the patent is unable to make health care decisions. When the document is finished, it must be signed and have been witnessed by two individuals who are not the agents,
caregivers A caregiver or carer is a paid or unpaid member of a person's social network who helps them with activities of daily living. Since they have no specific professional training, they are often described as informal caregivers. Caregivers most commo ...
, or relatives to the patient. The completed document should be signed by the witnesses and the client of the advance directive. The document should be given to the patent's physician, lawyer, spouse/partner, and family. The advance directive should be reviewed regularly and reflect changes in the client's current marital situation (e.g.
marriage Marriage, also called matrimony or wedlock, is a culturally and often legally recognized union between people called spouses. It establishes rights and obligations between them, as well as between them and their children, and between ...
or
divorce Divorce (also known as dissolution of marriage) is the process of terminating a marriage or marital union. Divorce usually entails the canceling or reorganizing of the legal duties and responsibilities of marriage, thus dissolving the ...
). For the agent to view the medical records of the client, the client should sign a
HIPAA The Health Insurance Portability and Accountability Act of 1996 (HIPAA or the Kennedy– Kassebaum Act) is a United States Act of Congress enacted by the 104th United States Congress and signed into law by President Bill Clinton on August 21, 1 ...
(Health Insurance Portability and Accountability Act) release form.


Criteria for being a surrogate agent

In the event that a surrogate decision maker has not been identified through either a medical power of attorney or a court-appointed legal guardian, such an agent is selected by
medical personnel A medic is a person involved in medicine such as a medical doctor, medical student, paramedic or an emergency medical responder. Among physicians in the UK, the term "medic" indicates someone who has followed a "medical" career path in postgr ...
. A
patient A patient is any recipient of health care services that are performed by healthcare professionals. The patient is most often ill or injured and in need of treatment by a physician, nurse, optometrist, dentist, veterinarian, or other hea ...
must meet a certain set of criteria prior to the legal selection of a health care surrogate agent. The patient must have a disabling condition such as a mental illness or infirmity, an impairment in the ability to complete activities of daily living,
cognitive impairment Cognitive deficit is an inclusive term to describe any characteristic that acts as a barrier to the cognition process. The term may describe * deficits in overall intelligence (as with intellectual disabilities), * specific and restricted defici ...
, and a lack of any previously indicated alternative to guardianship. This person is chosen by either the
attending physician In the United States and Canada, an attending physician (also known as a staff physician or supervising physician) is a physician (usually an M.D. or D.O.) who has completed residency and practices medicine in a clinic or hospital, in the spec ...
or their advance practice
nurse Nursing is a profession within the health care sector focused on the care of individuals, families, and communities so they may attain, maintain, or recover optimal health and quality of life. Nurses may be differentiated from other health c ...
. In the US, hierarchy of health care surrogates may vary according to the law of the specific state, but an example order of priority is listed here: #The client's guardian #The client's spouse #Any adult son or daughter of the client #Either parent of the client #Any adult brother or sister of the client #Any adult grandchild of the client, or an adult relative who has exhibited special care and concern, who has maintained close contact, and who is familiar with the patient's activities, health, and religious or moral beliefs #A close friend of the client #The client's guardian of the estate When there are multiple candidates at the same level of priority in the hierarchal structure, it becomes their duty to reach an agreement in regard to decisions and care of the patient. If such surrogate agents are unable to develop a consensus, the physician looks to the majority of agents in that category.Illinois General Assembly If an agent of greater hierarchy becomes available than the current identified agent, the person of higher precedence has priority. If any agent becomes unavailable, the
physician A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
returns to the hierarchal structure to indicate the next candidate. A prime example of this would be
Nancy Cruzan ''Cruzan v. Director, Missouri Department of Health'', 497 U.S. 261 (1990), was a landmark decision of the Supreme Court of the United States involving a young adult incompetent. The first "right to die" case ever heard by the Court, ''Cruzan'' ...
. This case has helped to establish some principles of surrogacy, such as using the person who best knows the patient rather than just the next of kin.


Controversial agents

Any health care surrogate agent is granted the same rights in regard to access of medical information and decision-making as would the alert and competent patient. These rights remain until such time as the client regains decisional capacity, a guardian is appointed, or the patient's death occurs. All health care surrogates are expected to follow the same set of standards: patient's known wishes, substituted judgments, and patient's best interests. The following people are denied the ability to act as a health care surrogate: # The client's treating health care provider # An employee of the treating health care provider, unless that employee is a relation of the patient # Owner, operator, or administrator of the patient's current health care facility # An employee of an owner, operator, or administrator of the patient's current health care facility, unless that employee is a relation of the patient


Powers and limitations of a surrogate

A surrogate decision-maker must use the
doctrine Doctrine (from la, doctrina, meaning "teaching, instruction") is a codification of beliefs or a body of teachings or instructions, taught principles or positions, as the essence of teachings in a given branch of knowledge or in a belief syste ...
of substituted judgment in consenting to or refusing health care on behalf of an incompetent individual. All surrogates, whether appointed by the person, by default, or by the court, have an
obligation An obligation is a course of action that someone is required to take, whether legal or moral. Obligations are constraints; they limit freedom. People who are under obligations may choose to freely act under obligations. Obligation exists when the ...
to follow the expressed wishes of the adult person and to act in the person's best interests, taking into account the person's values if known. If no advance directives are available, the proxy should use the principle of substituted judgment by considering what the patient would want in the given situation. This may require further discussion with others who knew the patient prior to the current period of incapacity. Occasionally, there is simply no information available about this patient's wishes and a "reasonable person" or best interest standard is applied by the hospital care team. This standard is used when the patient's values are unknown. The best interest's standard is the least preferred standard because surrogates use their own values to decide what is in the patient's best interests—which places a heavy burden on the surrogate. The agent should not be given the power to make decisions against the patient's will, and does not take away the right to make decisions from the patient. This is no longer effective when the agent knows that the patient has died.


Conflicts of interest

A conflict of interest occurs when an individual or organization is involved in multiple interests, one of which could possibly corrupt the motivation for an act in the other. For example, a woman marries a wealthy man. In his final will, the man wants to leave his multi-million dollar estate to his wife. Soon after this occurs, the man becomes ill and falls into an unconscious
persistent vegetative state A persistent vegetative state (PVS) or post-coma unresponsiveness (PCU) is a disorder of consciousness in which patients with severe brain damage are in a state of partial arousal rather than true awareness. After four weeks in a vegetative stat ...
. The wife believes that the care team should take her husband off life support and allow him to die. In this situation, the care team would have to take into account that a conflict of interest could be present. There are other examples of cases following the links listed below.


Best interests standard

The best interest standard is defined as the best possible outcome for patient in a given situation, the outcome that provides the most benefit to the patient. The values of the client must be taken into account. Religion, any beliefs related to life and death. What are the patient's best interests? Some best interests in order of their standards include life at any cost, freedom from pain, rationality, and
dignity Dignity is the right of a person to be valued and respected for their own sake, and to be treated ethically. It is of significance in morality, ethics, law and politics as an extension of the Enlightenment-era concepts of inherent, inalienable ...
. It is all in what the patient chooses to be of utmost importance to them.


Laws related to surrogacy in the US

To decide for themselves, the patient must be competent to decide. This means that the patient must be
conscious Consciousness, at its simplest, is sentience and awareness of internal and external existence. However, the lack of definitions has led to millennia of analyses, explanations and debates by philosophers, theologians, linguisticians, and scien ...
and able to choose the option they feel is best for their
health Health, according to the World Health Organization, is "a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity".World Health Organization. (2006)''Constitution of the World Health Organiza ...
and well-being. This must be fulfilled first under any circumstance. However, there are some exceptions. Some states have passed laws allowing incompetent patients with certified mental illness to speak for themselves regarding decision-making


Current status of the law

Adults that are considered Competence (law), competent have the right to refuse treatment. As stated above, some states allow incompetent adults to refuse treatment. There can also be recommended termination of medical treatment for incompetent adults by a physician. Two tests for competency are the substituted judgment test and the best interests test. Current statutory solutions include living wills or
advance directives An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal document in which a person specifies what actions should be taken for their health if they are no ...
that explain the patient's wishes in certain medical situations. A durable
power of attorney A power of attorney (POA) or letter of attorney is a written authorization to represent or act on another's behalf in private affairs (which may be financial or regarding health and welfare), business, or some other legal matter. The person auth ...
for health care (DPA/HC) and is another way of identifying a patient's final wishes through an attorney. The patient self-determination act states that hospitals and health care facilities must provide information about
advance directives An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal document in which a person specifies what actions should be taken for their health if they are no ...
and DPA/HC. Also, a
proxy Proxy may refer to: * Proxy or agent (law), a substitute authorized to act for another entity or a document which authorizes the agent so to act * Proxy (climate), a measured variable used to infer the value of a variable of interest in climate ...
or surrogate decision-maker can provide these final wishes to the doctor or care team if a DPA/HC or AD is not present. Some fictional assumptions underlying judicial decisions include the following misconceptions: 1. ''It is better to make a mistake in favor of preserving the patient's
life Life is a quality that distinguishes matter that has biological processes, such as Cell signaling, signaling and self-sustaining processes, from that which does not, and is defined by the capacity for Cell growth, growth, reaction to Stimu ...
.'' This is an all too common misconception about surrogate decision-making, and another reason why it is so important to have a DPA/HC or AD. In most cases, patients wish to have a death free from pain, and wish to be only provided with comfort care during the remaining hours of their
life Life is a quality that distinguishes matter that has biological processes, such as Cell signaling, signaling and self-sustaining processes, from that which does not, and is defined by the capacity for Cell growth, growth, reaction to Stimu ...
. 2. ''The state has an interest in preserving
life Life is a quality that distinguishes matter that has biological processes, such as Cell signaling, signaling and self-sustaining processes, from that which does not, and is defined by the capacity for Cell growth, growth, reaction to Stimu ...
.'' Although euthanasia is illegal in the US, Physician assisted suicide has been passed in some states. 3. ''Most people want to be kept "alive" by
machines A machine is a physical system using power to apply forces and control movement to perform an action. The term is commonly applied to artificial devices, such as those employing engines or motors, but also to natural biological macromolecul ...
.'' Most people don't want to drain their family's funds to keep them alive especially when they are in a
persistent vegetative state A persistent vegetative state (PVS) or post-coma unresponsiveness (PCU) is a disorder of consciousness in which patients with severe brain damage are in a state of partial arousal rather than true awareness. After four weeks in a vegetative stat ...
with no possible chance for
recovery Recovery or Recover may refer to: Arts and entertainment Books * ''Recovery'' (novel), a Star Wars e-book * Recovery Version, a translation of the Bible with footnotes published by Living Stream Ministry Film and television * ''Recovery'' (fil ...
. In these cases, it is often weighing the risks and benefits of keeping the patient breathing, when they are clearly not living their life to its full potential. 4. ''There is no harm in postponing the decision.'' Often postponing the decision to keep a person on life support drains
resources Resource refers to all the materials available in our environment which are technologically accessible, economically feasible and culturally sustainable and help us to satisfy our needs and wants. Resources can broadly be classified upon their av ...
and funds. 5. ''
Youth Youth is the time of life when one is young. The word, youth, can also mean the time between childhood and adulthood ( maturity), but it can also refer to one's peak, in terms of health or the period of life known as being a young adult. Yo ...
withdraw medical treatment from the elderly.'' Usually the next of
kin __NOTOC__ Kin usually refers to kinship and family. Kin or KIN may also refer to: Culture and religion *Otherkin, people who identify as not entirely human *Kinism, a white supremacist religious movement * Kinh, the majority ethnic group of V ...
to the elderly are younger, and know what the best interests of the elderly are and have discussed. Although at times it is difficult to explain the wishes of the patient to the
physician A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
or care team when the
proxy Proxy may refer to: * Proxy or agent (law), a substitute authorized to act for another entity or a document which authorizes the agent so to act * Proxy (climate), a measured variable used to infer the value of a variable of interest in climate ...
disagrees with the patient they are representing. 6. ''The
family Family (from la, familia) is a group of people related either by consanguinity (by recognized birth) or affinity (by marriage or other relationship). The purpose of the family is to maintain the well-being of its members and of society. Idea ...
may terminate medical treatment for financial reasons.'' It is difficult for a family member to see another family member suffer from illness or in pain, which is often why family members refrain from life support or a
feeding tube Eating (also known as consuming) is the ingestion of food, typically to provide a heterotrophic organism with energy and to allow for growth. Animals and other heterotrophs must eat in order to survive — carnivores eat other animals, herbi ...
. 7. ''Removal of life-sustaining treatment is a step toward euthanasia.'' Euthanasia and sustaining from treatment are completely different aspects of death. Euthanasia is usually taking an active approach to the death of a patient while removing treatment simply allows the patient to die from their illness while providing them comfort care. 8. ''The religious oppose termination of life-sustaining treatment.'' Freedom from pain and comfort care is most often the humane way and accepted by most all religions.


References

{{Reflist


External links


Moral Justifications for Surrogate Decision-Making

Proxy Consent and Surrogate Decision-Making

Health Care Directive Form




Common law Legal terminology Medical law Health law in the United States Medical ethics Medical terminology Decision-making