Surrogate decision-maker

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A surrogate decision maker, also known as a health care proxy or as agents, is an advocate for incompetent patients. If a patient is unable to make decisions for themselves about personal care, a surrogate agent must make decisions for them. If there is a durable power of attorney 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. [1]

Contents

Background

At the 1991 Annual Meeting of the American Medical Association, 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 physicians who may have to identify a surrogate decision maker, assist a surrogate (proxy) in making decisions for incompetent 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 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-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-proxy relationship. [1]

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. [2] 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. [3]

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. [4] [5]

When filing an advance directive, 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. 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. [6]

When drafting a health care proxy, it is best to consult a physician and attorney. The forms are available through lawyers, hospitals, 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, 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 or divorce). For the agent to view the medical records of the client, the client should sign a HIPAA (Health Insurance Portability and Accountability Act) release form. [7] [8] [9] [10]

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 patient 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, and a lack of any previously indicated alternative to guardianship. This person is chosen by either the attending physician or their advance practice nurse. [11] 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:

  1. The client's guardian
  2. The client's spouse
  3. Any adult son or daughter of the client
  4. Either parent of the client
  5. Any adult brother or sister of the client
  6. 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
  7. A close friend of the client
  8. The client's guardian of the estate [12] [13]

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. [14]

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 returns to the hierarchal structure to indicate the next candidate. [14]

A prime example of this would be Nancy 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. [14] [15]

The following people are denied the ability to act as a health care surrogate:

  1. The client's treating health care provider
  2. An employee of the treating health care provider, unless that employee is a relation of the patient
  3. Owner, operator, or administrator of the patient's current health care facility
  4. 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 [16]

Powers and limitations of a surrogate

A surrogate decision-maker must use the doctrine 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 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. [1] [17]

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. [18] [19] [20]

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. 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. [21]

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. It is all in what the patient chooses to be of utmost importance to them. [22]

To decide for themselves, the patient must be competent to decide. This means that the patient must be conscious and able to choose the option they feel is best for their health 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 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 that explain the patient's wishes in certain medical situations. A durable power of attorney 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 and DPA/HC. Also, a proxy 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:[ citation needed ]

1. It is better to make a mistake in favor of preserving the patient's life. 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.

2. The state has an interest in preserving life. 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. Most people don't want to drain their family's funds to keep them alive especially when they are in a persistent vegetative state with no possible chance for recovery. 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 and funds.

5. Youth withdraw medical treatment from the elderly. Usually the next of kin 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 or care team when the proxy disagrees with the patient they are representing.

6. The family 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.

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. [23]

Related Research Articles

<span class="mw-page-title-main">Informed consent</span> Process for obtaining subject approval prior to treatment or research

Informed consent is a principle in medical ethics and medical law and media studies, that a patient must have sufficient information and understanding before making decisions about their medical care. Pertinent information may include risks and benefits of treatments, alternative treatments, the patient's role in treatment, and their right to refuse treatment. In most systems, healthcare providers have a legal and ethical responsibility to ensure that a patient's consent is informed. This principle applies more broadly than healthcare intervention, for example to conduct research and to disclose a person's medical information.

<span class="mw-page-title-main">Power of attorney</span> Legal form of delegation

A power of attorney (POA) or letter of attorney is a written authorization to represent or act on another's behalf in private affairs, business, or some other legal matter. The person authorizing the other to act is the principal, grantor, or donor. The one authorized to act is the agent, attorney, or in some common law jurisdictions, the attorney-in-fact.

<span class="mw-page-title-main">Advance healthcare directive</span> Legal document

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 longer able to make decisions for themselves because of illness or incapacity. In the U.S. it has a legal status in itself, whereas in some countries it is legally persuasive without being a legal document.

<span class="mw-page-title-main">Do not resuscitate</span> Legal order saying not to perform CPR if heart stops

A do-not-resuscitate order (DNR), also known as Do Not Attempt Resuscitation (DNAR), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), no code or allow natural death, is a medical order, written or oral depending on the jurisdiction, indicating that a person should not receive cardiopulmonary resuscitation (CPR) if that person's heart stops beating. Sometimes these decisions and the relevant documents also encompass decisions around other critical or life-prolonging medical interventions. The legal status and processes surrounding DNR orders vary in different polities. Most commonly, the order is placed by a physician based on a combination of medical judgement and patient involvement.

Medical ethics is an applied branch of ethics which analyzes the practice of clinical medicine and related scientific research. Medical ethics is based on a set of values that professionals can refer to in the case of any confusion or conflict. These values include the respect for autonomy, non-maleficence, beneficence, and justice. Such tenets may allow doctors, care providers, and families to create a treatment plan and work towards the same common goal. It is important to note that these four values are not ranked in order of importance or relevance and that they all encompass values pertaining to medical ethics. However, a conflict may arise leading to the need for hierarchy in an ethical system, such that some moral elements overrule others with the purpose of applying the best moral judgement to a difficult medical situation. Medical ethics is particularly relevant in decisions regarding involuntary treatment and involuntary commitment.

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Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced heart disease than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.

A legal guardian is a person who has been appointed by a court or otherwise has the legal authority to make decisions relevant to the personal and property interests of another person who is deemed incompetent, called a ward. For example, a legal guardian might be granted the authority to make decisions regarding a ward's housing or medical care or manage the ward's finances. Guardianship is most appropriate when an alleged ward is functionally incapacitated, meaning they have a lagging skill critical to performing certain tasks, such as making important life decisions. Guardianship intends to serve as a safeguard to protect the ward.

The Patient Self-Determination Act (PSDA) was passed by the United States Congress in 1990 as an amendment to the Omnibus Budget Reconciliation Act of 1990. Effective on December 1, 1991, this legislation required many hospitals, nursing homes, home health agencies, hospice providers, health maintenance organizations (HMOs), and other health care institutions to provide information about advance health care directives to adult patients upon their admission to the healthcare facility. This law does not apply to individual physicians.

In the field of medicine, a healthcare proxy is a document with which a patient appoints an agent to legally make healthcare decisions on behalf of the patient, when the patient is incapable of making and executing the healthcare decisions stipulated in the proxy. Once the healthcare proxy is effective, the agent continues making healthcare decisions as long as the primary individual is legally competent to decide. Moreover, in legal-administrative functions, the healthcare proxy is a legal instrument akin to a "springing" healthcare power of attorney. The proxy must declare the healthcare agent who will gain durable power attorney. This document also notifies of the authority given from the principal to the agent and states the limitations of this authority.

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<span class="mw-page-title-main">Five Wishes</span>

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MOLST is an acronym for Medical Orders for Life-Sustaining Treatment. The MOLST Program is an initiative to facilitate end-of-life medical decision-making in New York State, Connecticut, Massachusetts, Rhode Island, Ohio and Maryland, that involves use of the MOLST form. Most other U.S. states have similar initiatives, such as Physician Orders for Life-Sustaining Treatment. In New York state, the MOLST form is a New York State Department of Health form. MOLST is for patients such as a terminally ill patient, whether or not treatment is provided. For this example, assume the patient retains medical decision-making capacity and wants to die naturally in a residential setting, not in the intensive-care unit of a hospital on a ventilator with a feeding tube. Using MOLST, with the informed consent of the patient, the patient's doctor could issue medical orders for life-sustaining treatment, including any or all of the following medical orders: provide comfort measures only; do not attempt resuscitation ; do not intubate; do not hospitalize; no feeding tube; no IV fluids; do not use antibiotics; no dialysis; no transfusions. The orders should be honored by all health care providers in any setting, including emergency responders who are summoned by a 9-1-1 telephone call after the patient loses medical decision-making capacity.

The Family Health Care Decisions Act is a statute adopted in New York state in 2010 that had been pending before the legislature since 1994. The statute was approved by the New York State Senate in July, 2009. The legislation was introduced by state senator Thomas Duane of Manhattan. It was signed into law by Gov. David Paterson on March 16, 2010.

In 2001, in the case Conservatorship of Wendland, also known as Wendland v. Wendland, and the Robert Wendland case, the Supreme Court of California unanimously ruled that Rose Wendland, the wife of Robert Wendland, in the absence of a durable power of attorney for health care (DPAHC), did not have the authority to withhold artificial nutrition and hydration in her husband's behalf. The Court recognized that patients unable to make a decision for themselves should receive special protection according to the right to life and right to privacy provided by the California constitution.

POLST is an approach to improving end-of-life care in the United States, encouraging providers to speak with the severely ill and create specific medical orders to be honored by health care workers during a medical crisis. POLST began in Oregon in 1991 and currently exists in 46 states; some of the 46 states have the program in development. The POLST document is a standardized, portable, brightly colored single page medical order that documents a conversation between a provider and an individual with a serious illness or frailty towards the end of life. A POLST form allows emergency medical services to provide treatment that the individual prefers before possibly transporting to an emergency facility.

Slow code refers to the practice in a hospital or other medical centre to purposely respond slowly or incompletely to a patient in cardiac arrest, particularly in situations for which cardiopulmonary resuscitation (CPR) is thought to be of no medical benefit by the medical staff. The related term show code refers to the practice of a medical response that is medically futile, but is attempted for the benefit of the patient's family and loved ones. However, the terms are often used interchangeably.

Advance care planning is a process that enables individuals to make plans about their future health care. Advance care plans provide direction to healthcare professionals when a person is not in a position to make and/or communicate their own healthcare choices. Advance care planning is applicable to adults at all stages of life. Participation in advance care planning has been shown to reduce stress and anxiety for patients and their families, and lead to improvements in end of life care. Older adults are more directly concerned as they may experience a situation where advance care planning can be useful. However, a minority use them. A research conducted in Switzerland with people aged 71 to 80 showed that better knowledge on advance care planning dispositions could improve the perception older people have of them. Communication on dispositions should take into account individual knowledge levels and address commonly enunciated barriers that seem to diminish with increased knowledge.

Sterilization law is the area of law, within reproductive rights, that gives a person the right to choose or refuse reproductive sterilization and governs when the government may limit this fundamental right. Sterilization law includes federal and state constitutional law, statutory law, administrative law, and common law. This article primarily focuses on laws concerning compulsory sterilization that have not been repealed or abrogated and are still good laws, in whole or in part, in each jurisdiction.

In the law of England and Wales, best interest decisions are decisions made on behalf of people who do not have mental capacity to make them for themselves at the time the decision needs to be taken. Someone who has the capacity to make a decision is said to be "capacitous". Since 2007, there has been a dedicated court with jurisdiction over mental capacity: the Court of Protection, although it mostly deals with adults. Most applications to make decisions on behalf of a child are still dealt with by the Family Court.

References

  1. 1 2 3 Sabatino, Charles (2007). "Surrogate Decision Making".
  2. ↑ Torke, AM; Siegler M; Abalos A; Moloney RM; Alexander GC (September 2009). "Physicians' Experience with Surrogate Decision Making for Hospitalized Adults". Journal of General Internal Medicine. 24 (9): 1023–1028. doi:10.1007/s11606-009-1065-y. PMC   2726893 . PMID   19633896.
  3. ↑ Torke, AM; Moloney R; Siegley M; Abalos A; Alexander GC (March 2010). "Physicians' views on the importance of patient preferences in surrogate decision-making". Journal of the American Geriatrics Society. 58 (3): 533–538. doi:10.1111/j.1532-5415.2010.02720.x. PMC   3513265 . PMID   20158556.
  4. ↑ "American Bar Association". Archived from the original on 2022-10-06. Retrieved 2010-04-22.
  5. ↑ "Aging with Dignity". 2009. Archived from the original on 2009-05-14.
  6. ↑ "Issues and Concepts". Ascension Health. 2009.
  7. ↑ "Massachusetts Medical Society". 2010.
  8. ↑ "Create Your Health Care Proxy".
  9. ↑ "Health Care Proxy and Other Advance Directives in New York". Lamson & Cutner.
  10. ↑ "Health Information Privacy". HHS. 2015-08-26. Archived from the original on 2015-12-06. Retrieved 2017-09-15.
  11. ↑ Gavisk & Greene; Greene, Edith (2007). "Guardianship Determinations by Judges, Attorneys, and Guardians". Behavioral Sciences & the Law. 25 (3): 339–353. doi:10.1002/bsl.772. PMID   17559155. S2CID   15994936.
  12. ↑ Illinois General Assembly. "Health Care Surrogate Act".
  13. ↑ The Florida Senate. "The 2009 Florida Statutes: Health Care Advance Directives".
  14. 1 2 3 Illinois General Assembly
  15. ↑ Berger; DeRenzo; Schwartz (2008). "Surrogate Decision Making: Reconciling Ethical Theory and Clinical Practice". Annals of Internal Medicine. 149 (1): 48–53. CiteSeerX   10.1.1.691.1213 . doi:10.7326/0003-4819-149-1-200807010-00010. PMID   18591637. S2CID   24744848.
  16. ↑ "Health Care Surrogates: What do I need to know?". Appalachian Legal Services.
  17. ↑ "End of Life Care Manual". Washington State Hospital Association. 2005.
  18. ↑ "Advance Directives Module for Internal Medicine Clerkship". University of Toronto.
  19. ↑ "Surrogate Decision Making". Drexel University. 2006.
  20. ↑ "Surrogate Decision Making in Nebraska" (PDF). Nebraska Department of Health and Human Services. 2007.
  21. ↑ Fiore, Kristina (2010). "Conflicts of Interests Policies: A Detailed Look".
  22. ↑ Pierce, J.; Randels, G. (2009). Contemporary Bioethics: A Reader with Cases. USA: Oxford University Press. ISBN   978-0-19-531382-6.
  23. ↑ Hamman, Ardath (1993). "Family Surrogate Laws: A Necessary Supplement to Living Wills and Durable Powers of Attorney". Villanova Law Review. 38 (1): 103–77. PMID   11654083.
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