Health Care Proxy Law allows the appointment by the patient of someone he/she trusts — for example, a family member or close friend – to make health care decisions for him/her if the patient loses the ability to make decisions himself/herself. By appointing a health care agent, the patient makes sure that health care providers follow his/her wishes.

Everyone over the age of 18 can appoint a health care agent. There are two situations in which a health care agent will be needed:

  1. Temporary inability to make health care decisions – no matter what your age is.++++++++++++++++ For example, you are having an outpatient surgical procedure and are under general anesthesia. Something unexpected happens and a health care decision needs to be made. If you have a health care agent, since you are temporarily unable to make your own decisions, the health care agent may make the decision. Once you become conscious again, the health care agent would no longer have any authority to act;
  2. Permanent inability to make health care decisions – this would arise if you were comatose from a terminal illness, in a persistent vegetative state, suffered from an illness that left you unable to communicate or, if elderly, suffered from senile dementia or Alzheimer's disease. Under these circumstances you would obviously be unable to make your own health care decisions. If you don't have a health care agent, all appropriate medical treatments will be provided to you. If you have appointed a health care agent, your health care agent can be your voice and make your health care decisions according to your own wishes, or your best interests.

Your agent can also decide how your wishes apply as your medical condition changes. Hospitals, doctors and other health care providers must follow your agent's decisions as if they were your own. You may give the person you select as your health care agent as little or as much authority as you want. You may allow your agent to make all health care decisions or only certain ones. You may also give your agent instructions that he or she must follow. The Health Care Proxy Form may also be used to document your wishes or instructions with regard to organ and/or tissue donation.

Making decisions about how you want to live the remainder of your life and appointing the appropriate person to be your health care agent can be overwhelming. In order to assist in the decision making process, the Department recommends the following steps:

Clarify Values and Beliefs

It is important to consider and to think about your individual wishes as they relate to how you want to live the remainder of your life. Most people don't have any idea how to begin to think about this or begin a discussion about this. Many people are finding that using tools, such as a values assessment, may help to pinpoint key feelings and opinions about how they want to live the remainder of their lives. Such tools can be found at the following web sites:

Choose a Spokesperson

Choosing a health care agent who will speak for you and make decisions when you are unable is a very important task that each adult needs to make, regardless of age or health care status. Your agent will advocate for your preferred treatment and ensure that your wishes are carried out at a point in time when you cannot speak for yourself.

Once your agent is chosen, it is very important to share your wishes, thoughts and opinions about how you want to live the remainder of your life with your agent. A person will not be able to predict every scenario that may present itself in a health care situation. As such, explaining your thoughts, feelings and preferences will give your agent the information necessary to make decisions on your behalf.

Discuss Your Wishes

It is important to discuss your wishes with your health care providers, particularly your primary care provider. This information will enable your providers to care for you in a manner that is consistent with your wishes.

Forms: Appointing Your Health Care Agent in New York State

The New York Health Care Proxy form and instructions are available as an Abobe Acrobat PDF (portable document format) in the following languages:

Practical Issues

Once your Health Care Proxy has been signed, it's important to ensure that a copy is given to your agent, primary care provider and other family members. It is also a good idea to consider carrying a copy in your wallet or purse, in case of unexpected emergencies.

Resources:


  • Clinical vs Legal Incapacity
  • Informed Consent
  • Confidentiality and HIPAA
  • Medical Malpractice
  • Advance Directives
Patients who have clinical and legal capacity have the right to make health care decisions, including refusal of medically necessary care, even if death may result from refusal. Patients who lack either capacity cannot make health care decisions. However, if a patient deemed by a physician to lack clinical capacity expresses a preference, the physician is not entitled to override that preference unless the patient is also found by a court to lack legal capacity to make that decision.

Clinical capacity: Clinical capacity to make health care decisions is the ability to understand the benefits and risks of the proposed health care, to understand possible alternatives, and to make and communicate a health care decision. Health care practitioners determine this type of capacity clinically and document the determination process. The courts become involved only when the determination itself or another aspect of the process is challenged.

Clinical capacity is specific to a particular health care decision and thus is limited to that decision. The level of clinical capacity needed to make a health care decision depends on the complexity of that decision. Patients with some decrease in capacity, even those with fairly severe cognitive deficits, may still have enough capacity to make simple health care decisions, such as whether to allow a rectal examination or placement of an IV. The same patient may lack the capacity to decide whether to participate in a clinical trial. All feasible attempts should be made to involve the patient in decision making. Ignoring the decision of patients with capacity or accepting the decision of patients without capacity is unethical and risks civil liability. A patient's ability to carry out a decision is also important for physicians to assess. For example, a patient with a broken leg may be able to make decisions but be unable to carry them out. Providing the necessary support to carry out a decision becomes an important goal of care.

Capacity may be intermittent, variable, and affected by the environment. Patients who lack capacity due to intoxication, delirium, coma, severe depression, agitation, or other impairment may regain capacity when their impairment resolves. To obtain consent to treat a patient who lacks clinical capacity, health care practitioners must contact an agent or proxy designated in the patient's durable power of attorney for health care or another legally authorized surrogate (see below). If urgent or emergency care is needed (eg, for an unconscious patient after an acute event) and there is no designated surrogate or the surrogate is unavailable, the doctrine of presumed consent applies: Patients are presumed to consent to any necessary treatment.

Legal capacity: Legal capacity (also called competency) is a legal status; it cannot be determined by health care practitioners. In the US, people aged ³ 18 yr are automatically considered legally capable of making health care decisions for themselves. Emancipated minors are people below the age of majority (usually 18) who are also considered legally capable. The definition of this group varies by state but generally includes minors who are married, who are in the armed forces, or who have obtained a court decree of emancipation.

People remain legally capable until a judge with appropriate jurisdiction declares them legally incapacitated with respect to some or all areas of functioning. The legal requirements for declaring legal incapacity vary by state. However, substantiation of all of the following is typically required:

· A disabling condition (eg, intellectual disability [mental retardation], a mental disorder, dementia, altered consciousness, chronic use of drugs)

· Inability to receive and evaluate information or to make or communicate decisions

· Inability to meet essential requirements of physical health, safety, or self-care without protective intervention

If physicians question a person's legal capacity, they may seek a court's determination. Physicians may be asked to testify at or provide documentation for a hearing to determine legal capacity.

When the court declares a person legally incapacitated, it appoints a guardian or conservator to make legally binding decisions for the person in a specific range of matters. Courts can also make decisions about disputed issues (eg, the meaning of a particular instruction in the patient's living will about which parties disagree).
To give informed consent, patients must have legal and clinical capacity. Health care practitioners obtaining informed consent must be qualified to explain the risks and benefits of the intervention and to answer appropriate questions. The law requires that health care practitioners take reasonable steps to communicate adequately with patients who do not speak English or who have other communication barriers.

Full disclosure

Ethical and legal authorities generally agree that health care practitioners are obligated to ensure, at a minimum, that patients understand:

· Their current medical status, including its likely course if no treatment is pursued


· Potentially helpful treatments, including a description and explanation of potential risks and benefits


· Usually, the practitioner's professional opinion as to the best alternative


· Uncertainties associated with each of these elements


Generally, these discussions are noted in the medical record, and a document describing the discussion is signed by the patient.

Although practitioners are ethically bound to provide sufficient information and to encourage decisions judged to be in the patient's best interest, patients still have the right to refuse treatment. A patient's refusal of treatment is not considered to be attempted suicide, nor is the health care practitioner's compliance with the patient's wishes legally considered physician-assisted suicide. Rather, the subsequent death is considered legally to be a natural consequence of the disease process itself.

A refusal of care, if puzzling, should prompt the health care practitioner to initiate further discussion. If refusal of treatment will hurt other people, such as a minor child or other dependent, ethical and legal consultation should be sought.

 

Consent and Surrogate Decision Making

When immediate decisions are medically required, the doctrine of presumed consent applies (see above). In other circumstances, consent must be obtained.

Children: For most nonemergency medical decisions affecting minors, medical care cannot proceed without a parent's or guardian's consent. The parent's or guardian's decision can be overridden only if a court determines that the decision constitutes neglect or abuse of the minor. In some states, minors can consent to certain medical treatments (eg, treatment of sexually transmitted diseases, prescriptions for birth control, abortion) without parental permission. Individual state law must be consulted.

Adults: When adult patients lack capacity to consent to or refuse medical treatment, health care practitioners must rely on an authorized surrogate for consent and decision making. All surrogates¾whether appointed by the individual, by default, or by the court¾have an obligation to follow the expressed wishes of the patient and to act in the patient's best interests, taking into account the patient's personal values to the extent known.

If adult patients already have a court-appointed guardian with authority to make health care decisions, the guardian is the authorized surrogate. If patients who lack capacity have a durable power of attorney for health care, the agent or proxy appointed by that document is authorized to make health care decisions within the scope of authority granted by the document. Generally, specific instructions that are given in a living will, health care declaration, or other advance directive executed by patients while capacitated can be relied on.

If the decision of an authorized agent or proxy seems to conflict directly with instructions in a living will, the outcome depends on the scope of discretion given to the agent or proxy. Normally, the durable power of attorney for health care confers broad decision-making discretion on the agent. Nevertheless, the health care practitioner should determine whether the document gives the agent broad discretion beyond the written instructions or limits the agent to the written instructions. Legal advice may be needed.

If patients have no authorized surrogate, health care practitioners usually rely on the next of kin or even a close friend. However, the exact scope of authority and the priority of permissible surrogates vary by state. Typically, the order of priority is a spouse (or domestic partner in jurisdictions that recognize this status), an adult child, a parent, a sibling, then possibly other relatives or a close friend. If more than one person has the same priority (eg, several adult children), consensus is preferred, but some states allow health care practitioners to rely on a majority decision.

If a patient's decision-making capacity, a surrogate's authority, or the ethical or legal appropriateness of a particular treatment decision is disputed, consultation with an institutional ethics committee or similar body is advisable. If agreement on an ethically and legally sound resolution cannot be reached, health care practitioners may need to request court review. Many institutions make the ethics committee available on short notice (eg, in 1 or 2 days); judicial review is typically more time-consuming.

Scope: Patient choice is not limitless. For example, health care practitioners are not required to provide treatments that are medically inappropriate, such as those that are against generally accepted health care standards. However, sometimes there are legitimate differences of opinion regarding what is inappropriate. Labeling a treatment as "futile" does not generally help if said treatment may affect outcomes other than mortality or morbidity that are important to the patient. Physicians do not have to act against their conscience, but if they cannot comply with a requested course of action, they may have a responsibility to try to transfer a patient to another physician or institution of the patient's choice.
Traditionally, ethical health care has always included the need to keep patients' medical information confidential. However, the Health Insurance Portability and Accountability Act (HIPAA¾see www.hhs.gov/ocr/hipaa [Preview]) has codified the responsibility of health care providers. In HIPAA, "health care providers" include health plans, health care clearing-houses, and health care practitioners who electronically conduct financial and administrative transactions (eg, enrollment, billing, eligibility verification). Key provisions of HIPAA involve the following areas.

Access to medical records: Generally, patients should be able to see and obtain copies of their medical records and request corrections if they identify errors.

Notice of privacy practices: Health care providers must provide a notice about their possible uses of personal medical information and about patient rights under HIPAA regulations.

Limits on use of personal medical information: HIPAA limits how health care providers may use individually identifiable (protected) health information. The act does not restrict physicians, nurses, and other practitioners from sharing information needed to treat their patients. However, practitioners may use or share only the minimum amount of protected information needed for a particular purpose. In most situations, personal health information may not be used for purposes unrelated to health care. For example, a patient must sign a specific authorization before a health care provider can release medical information to a life insurer, a bank, a marketing firm, or another outside business for purposes unrelated to the patient's current health care needs.

Marketing: Marketing is communication designed to encourage people to purchase a particular product or service. HIPAA requires that the patient's specific authorization must be obtained before disclosing information for marketing. The health care practitioner must disclose any payments that will be received as a result of marketing. However, health care practitioners can freely communicate with patients about treatment options, products, and other health-related services, including disease-management programs.

Confidential communications: A patient can request that health care practitioners take reasonable steps to ensure that their communications with the patient are confidential. For example, patients could ask a physician to call their office rather than home. Nonetheless, unless the patient objects, practitioners can share medical information with a patient's immediate family members or someone known to be a close personal friend if the information relates directly to that person's involvement with the patient's care or payment for care. Practitioners are expected to exercise professional judgment.

For purposes of the privacy rule, an authorized personal representative of the patient (eg, a proxy appointed in a power of attorney for health care or a state-authorized decision-making surrogate) should be treated the same as the patient. Thus, the representative has the same access to information and may exercise the same rights regarding confidentiality of information. Nevertheless, practitioners may restrict information or access if there are reasonable concerns about domestic violence, abuse, or neglect by the representative.

Some communication cannot remain confidential. Health care practitioners are sometimes required by law to disclose certain information, usually because the condition may present a danger to other people. For example, certain infectious diseases (eg, HIV, syphilis, TB) must be reported to state or local public health agencies. Conditions that might seriously impair a patient's ability to drive, such as dementia or recent seizures, must be reported to the Department of Motor Vehicles in some states.

Complaints: Patients may file complaints about compliance with these privacy practices. Complaints can be made directly to the health care practitioner or to the Office for Civil Rights in the US Department of Health and Human Services. Patients do not have a right to file a private lawsuit under HIPAA. There are civil and criminal penalties for misuse of personal health information; however, such penalties should not worry health care practitioners who, in good faith, make reasonable attempts to comply.
Advance Directives

Advance directives are legal documents that extend a person's control over health care decisions in the event that the person becomes incapacitated. They are called advance directives because they direct preferences before incapacitation occurs. There are 2 primary types:

· Living will: Expresses preferences for end-of-life care

· Durable power of attorney for health care: Designates a surrogate decision maker

Every state in the US recognizes and has defined these documents by statute to provide a simple legal tool by which people can express their wishes and have them honored. However, advance directives are not the only means of expressing such wishes. Any authentic expression of patient's wishes should be honored.

An advance directive cannot be completed after a patient becomes mentally incapacitated, and in most states, it does not become effective until after incapacity has been determined. If no advance directive has been prepared, an authorized surrogate (see p. 3469) must be identified or appointed to make health care decisions.

Living will: A living will expresses a patient's preferences for end-of-life health care (it is called a "living" will because it is in effect while the person is still alive). In some states, the document is called a directive to doctors or a declaration. State laws vary greatly regarding scope and applicability of living wills.

A living will allows people to express preferences for the amount and nature of their health care, from no interventions to maximum care. Detailed treatment preferences are desirable because they provide more specific guidance to practitioners. A living will cannot compel health care practitioners to provide health care that is medically or ethically unwarranted.

To be valid, a living will must comply with state law. Some states require that living wills be written in a fairly standardized way. Others are more flexible, permitting any language as long as the document is appropriately signed and witnessed. In most states, a health care practitioner involved in the patient's care cannot be a witness. A document that does not comply with state law requirements for statutory living wills may still serve as a valid communication of a patient's wishes as long as it is an authentic expression of the patient's wishes.

Living wills go into effect upon the loss of ability to make health care decisions or the existence of a medical condition specified in the directive¾typically a terminal condition, permanent vegetative state, or the end-stage of a chronic condition. Often, state law provides a process for confirming and documenting the loss of decisional capacity and the medical condition.

Durable power of attorney for health care: In this document, one person (the principal) names another person (the agent, proxy, or the attorney-in-fact) to make decisions about health care and only health care. In most states, these documents become legally effective when the principal loses clinical capacity to make health care decisions. Some states recognize immediately effective durable powers of attorney for health care, but as a practical matter, the principal retains decision-making authority until incapacity regardless, so there is little practical difference. Like the living will, the durable power of attorney for health care may be referred to by different terms in different states.

While a living will states a person's specific preferences regarding medical treatment, a durable power of attorney for health care designates an agent to make health care decisions. People who have both a living will and a durable power of attorney for health care should stipulate which should be followed if the documents seem to conflict. Because predicting future circumstances in all of their complexity is virtually impossible and because the durable power of attorney for health care designates a decision maker who can respond to here-and-now circumstances, a durable power of attorney is far more practical and flexible than a living will. The agent is granted the power to discuss medical alternatives with the physicians and make decisions if an accident or illness incapacitates the person. In most states, a health care practitioner involved in the care of the patient cannot serve as agent for health care matters, unless the practitioner is a close relative. The durable power of attorney for health care can include a living will provision or any other specific instructions but, preferably, should do so only as guidance for the agent, rather than as a binding instruction.

The durable power of attorney for health care should name an alternate or successor in case the first-named person is unable or unwilling to serve as agent. Two or more people may be named to serve together (jointly) or alone (severally), although reliance on multiple concurrent agents can be problematic. A jointly held power requires that all agents agree and act together. In this arrangement, all named agents must be contacted and must agree on every decision. However, this arrangement can be unwieldy because agreement may be difficult to achieve and because one of the agents may be unreachable when a critical decision must be made. A severally held power may be more functional because it allows any named agent to act alone. However, this arrangement can also lead to disagreement, and the courts may eventually have to become involved. For example, if ³ 2 people serve jointly in severally held power and they absolutely cannot agree, the parties are likely to end up in court.

The use of the durable power of attorney for health care is valuable for adults of all ages. It is especially critical for unmarried couples, same-sex partners, friends, or other individuals who are considered legally unrelated and who wish to grant each other the legal authority to make health care decisions and to ensure rights of visitation and access to medical information.

Ideally, physicians should obtain a copy of a patient's living will and durable power of attorney for health care, review the contents with the patient while the patient is still capable, and make it part of the medical record. A copy of the durable power of attorney for health care should also be given to the patient's appointed agent and another copy placed with important papers. The patient's attorney should hold a copy of all documents. An increasing number of states offer optional electronic registries for recording advance directives.
Do-Not-Resuscitate Orders

The do-not-resuscitate (DNR) order placed in a patient's medical record by a physician informs the medical staff that CPR (see p. 2256) should not be done. This order has been useful in preventing unnecessary and unwanted invasive treatment at the end of life.

Physicians discuss with patients the possibility of cardiopulmonary arrest, describe CPR procedures, and ask patients about treatment preferences. If the patient is incapable of making a decision about CPR, a surrogate may make the decision based on the patient's previously expressed preferences or, if such preferences are unknown, in accordance with the patient's best interests.

Almost all states have specialized DNR protocols for patients who are living at home or in any nonhospital setting. These protocols typically require the signing of an out-of-hospital DNR order by both the physician and patient (or the patient's surrogate) and the use of a special identifier (eg, a bracelet or brightly colored form) that is worn by or kept near the patient. If emergency medical personnel are called in case of emergency and see an intact identifier, they will provide comfort care only and not attempt resuscitation. These protocols are important to know because normally, emergency medical technicians are not expected to read or rely upon a living will or durable power of attorney for health care.

A DNR order does not mean "do not treat." Rather, it means only that CPR will not be done. Other treatments (eg, antibiotic therapy, transfusions, dialysis, use of a ventilator) that may prolong life can still be provided. CPR itself usually does not result in long-term, neurologically intact survival, but other treatments, including aggressive or critical care that prevents cardiac arrest, can. Thus, whether to pursue other treatments is a more important decision than whether to resuscitate. A person with a DNR order can still be treated aggressively in an intensive care unit if their condition warrants.
Patients can sue health care practitioners if they feel they have been injured. However, successful medical malpractice lawsuits require proof of the following:

· The care provided was below the ordinary standard of care that would be provided by similar health care practitioners under similar circumstances.

· A professional relationship existed between the health care practitioner and the injured party.

· The patient was harmed because of the deviation from the standard of care.

Concern about lawsuits sometimes puts pressure on physicians to act in ways that are not necessarily in the best interest of their patients. For example, physicians may order tests or treatments that are not clearly medically necessary just because patients request them or to avoid even a remote possibility of missing something and thus leaving themselves open to a lawsuit. However, such an approach is not required by law, may not protect against lawsuits, and is generally considered excessive and inappropriate. Also, explaining why a requested test or treatment is not recommended usually satisfies patients. The best defense against malpractice lawsuits is providing excellent health care and building close, trusting, collaborative relationships with patients.

 

Reference

1. http://www.nejm.org/doi/full/10.1056/NEJMra1108646?query=TOC#t=article