Overview & FHCDA Text
New York’s Family Health Care Decisions Act (FHCDA) (NY PHL Article 29-CC effective June 1, 2010) establishes the authority of a patient’s family member or close friend to make health care decisions for the patient in cases where the patient lacks decisional capacity and did not leave prior instructions or appoint a health care agent. This “surrogate” decision-maker would also be empowered to direct the withdrawal or withholding of life-sustaining treatment when standards set forth in the statute are satisfied.
The FHCDA Resource Center is a project of the NYSBA Health Law Section. It is intended as a resource for all persons who are seeking information about the FHCDA – including health care professionals, health care attorneys, advocacy groups, policymakers and members of the public.
Summary of Key Provisions
2020 Update by Robert N. Swidler and Jorge L. Rivera
It has been ten years since the enactment of the Family Health Care Decisions Act (FHCDA). The FHCDA establishes the authority of a patient’s family member or close friend to make medical treatment decisions for the patient in the event the patient lacks capacity to make such decisions personally and did not previously make such decisions or appoint a health care agent.
Key provisions of the FHCDA, as amended through 2020, are summarized below.
Note that the FHCDA is detailed, and this summary does not cover all its provisions.
In sum, the FHCDA:
Defines terms used in the FHCDA,
A key recently added term is “attending practitioner” which means “a physician, nurse practitioner or physician assistant, selected by or assigned to a patient pursuant to hospital policy, who has primary responsibility for the treatment and care of the patient.”
- Does not apply to decisions for incapable patients:
- who have a health care agent;
- who have a court-appointed guardian under SCPA 1750-b;
- for whom decisions about life-sustaining treatment may be made by a family member or close friend under SCPA 1750-b;
- for whom treatment decisions may be made pursuant to OMH or OPWDD surrogate decision-making regulations.
- Sets forth a hospital-based process to determine that a patient lacks decisional capacity for purposes of the FHCDA. It involves an initial determination by the attending practitioner, and a concurring determination by a “health or social service practitioner.”
- Requires that practitioners who determine whether a patient lacks capacity as a result of intellectual disability or mental illness must possess special credentials.
- Requires that the patient and prospective surrogate be informed of the determination of incapacity.
- Requires additional notifications for patients from mental hygiene facilities.
- Provides that if the patient objects to the determination of incapacity, or the choice of surrogate, or the surrogate’s decision, the patient’s objection prevails unless a court find that the patient lacks capacity, or another legal basis exists for overriding the patient’s decision.
Decisions for Adult Patients by Surrogates
- Sets forth, in order of priority, the persons who may act as a surrogate decisionmaker for the incapable patient, i.e.:
- an MHL Article 81 court-appointed guardian (if there is one, and if empowered by the court order to make health care decisions);
- the spouse or domestic partner (as defined in the FHCDA);
- an adult child;
- a parent;
- an adult brother or sister;
- a close friend.
- Grants the surrogate authority to make all health care decisions for the patient that the adult patient could make for himself or herself, subject to certain standards and limitations.
- Provides that a surrogate’s consent is not required if the patient already made a decision about the proposed health care, expressed orally or in writing or, with respect to a decision to withdraw or withhold life-sustaining treatment expressed either orally during hospitalization in the presence of two witnesses or in writing.
- Requires the surrogate to decide about treatment based on the patient’s wishes, including the patient’s religious and moral beliefs, or, if the patient’s wishes are not reasonably known and cannot with reasonable diligence be ascertained, based on the patient’s best interests.
- Authorizes surrogate decisions to withhold or withdraw life-sustaining treatment if the treatment:
- would be an extraordinary burden to the patient and the patient is terminally or permanently unconscious, or
- if the patient has an irreversible or incurable condition and the treatment would involve such pain, suffering or other burden that it would reasonably be deemed inhumane or excessively burdensome under the circumstances.
- Inasmuch as the definition of life-sustaining treatment includes decisions about resuscitation, this standard would apply to a surrogate decision to enter a DNR order as well.
Decisions for Minor Patients
- Authorizes the parent or guardian of a minor patient to decide about life-sustaining treatment, in accord with the same standards that apply to surrogate decisions for adults.
- Requires the parent or guardian to make the decision in accordance with the minor’s best interests, taking into account the minor’s wishes as appropriate under the circumstances.
- If the attending practitioner determines that the minor has the capacity to decide about life-sustaining treatment, requires the minor’s consent to withhold or to stop treatment.
- If there is another parent who is unaware of the decision, requires an attempt to inform such parent of the decision.
- Allows an attending practitioner to accept a life-sustaining treatment decision by an emancipated minor without parental consent, although a decision by the minor to forgo such treatment requires ethics review committee approval.
Decisions for Adult Patients Without Surrogates
- Establishes a procedure for making health care decisions, other than life-sustaining treatment decisions, for adult patients who have lost decision making capacity and have no available family member or friend to act as a surrogate.
- Requires hospitals, after a patient is admitted, to determine if the patient has a health care agent, guardian, or a person who can serve as the patient’s surrogate. If the patient has no such person, and lacks capacity, the hospital must identify, to the extent practical, the patient’s wishes and preferences about pending health care decisions.
- Authorizes the attending practitioner to decide about routine medical treatment for patients without surrogates.
- For decisions about major medical treatment, the attending practitioner must consult with other health care professionals directly involved with the patient’s care and a second practitioner selected by the hospital or nursing home must concur in the decision.
- A decision to withdraw or withhold life-sustaining treatment can be made either (a) by a court, in accordance with the FHCDA surrogate decision making standards, or (b) the attending practitioner and a second practitioner determine that the treatment offers the patient no medical benefit because the patient will die imminently, even if the treatment is provided, and the provision of the treatment would violate accepted medical standards.
Other FHCDA Provisions
- Requires hospitals and nursing homes to establish or participate in an ethics review committee that meets certain standards (e.g., multidisciplinary membership).
- The committee would provide advice upon request or in the event of disputes and review certain sensitive surrogate decisions.
- Sets forth the right of private hospitals and individual health care providers to refuse, on grounds of moral or religious conscience, to honor health care decisions made pursuant to the FHCDA, subject to limits and requirements (e.g., the facility must notify patients of its policy prior to admission, and promptly transfer responsibility for the patient to another health care professional or hospital willing to honor the decision.)
- Protects surrogates, health care providers and ethics committee members from civil and criminal liability for acts performed in good faith pursuant to the FHCDA.
- Provides that liability for the cost of health care provided to an adult patient under the FHCDA is the same as if the patient had consented to treatment.
- Establishes that the FHCDA does not:
- expand or diminish any authority an individual may have to express health care decisions for himself or herself;
- affect existing law concerning implied consent to health care in an emergency;
- permit or promote suicide, assisted suicide, or euthanasia;
- diminish the duty of parents to consent to treatment for minors.
- Provides that a hospital or attending practitioner that refuses to honor a health care decision made by a surrogate in accord with the standards set forth in the FHCDA is not entitled to compensation for treatment provided without the surrogate’s consent, except under specified circumstances.
- Eliminates much of New York’s DNR Law as applied to hospitals and provides for DNR decision-making in hospitals in accordance with the standards and procedures in the FHCDA.
- Creates a new PHL Article 29-CCC as a place to retain (with some modifications) existing provisions on nonhospital DNR orders.
- Obligates home care agency staff and hospice staff to honor nonhospital DNR orders (previously, nonhospital DNR orders were directed only to emergency medical services and hospital personnel).
- Renames the former DNR law, PHL Article 29-B, as “Orders Not to Resuscitate for Residents of Mental Hygiene Facilities” in order to preserve existing authorization for and rules regarding DNR orders in those settings.
Health Care Proxy Law Amendments
- Amends the Health Care Proxy Law:
Conforming Amendments to MHL Article 81 and the Health Care Decisions Act (SCPA 1750-b)
- Authorizes an MHL Article 81 guardian of the person to act as a surrogate under the FHCDA for decisions in hospitals.
- Repeals provisions in MHL Article 81 that restrict the authority of a guardian to make life-sustaining treatment decisions.
- Amends the Health Care Decisions for Persons Who Are Intellectually Disabled (SCPA § 1750-b) to insert a definition of “life-sustaining treatment”.
- Amends SCPA § 1750-b to allow the Willowbrook Consumer Advisory Board to act as the guardian for class members.
Task Force Special Committees
- Directs the NYS Task Force on Life and the Law to create a special committee, with half of its members appointed by OPWDD and OMH, to provide advice on standards and procedures for surrogate decision making for persons with MI/DD, and persons in mental health facilities.
- Directs the NYS Task Force on Life and the Law to make recommendations on extending FHCDA decision making standards and procedures to other settings, such as physicians’ offices and home care.
- Hospitals were required to implement the FHCDA by June 1, 2010, but effective immediately hospitals were permitted to adopt and follow policies that are consistent with the FHCDA standards and procedures.
 NY Laws of 2010, Chapter 8.
 N.Y. Public Health Law § 2994-a.2
 N.Y. Public Health Law § 2994-b.1.
 Id., § 2994-a.16.
 Id., § 2994-b.2.
 Id., § 2994-b.3(a).
 Id., § 2994-b.3(b).
 Id., § 2994-b.3(c). See 14 NYCRR § 633.11.
 Id., § 2994-c.
 Id., § 2994-c.3(c).
 Id., § 2994-c.4(a),(b).
 Id., § 2994-c.4(c).
 Id., § 2994-c.6.
 Id., § 2994-d.1.
 Id., § 2994-d.3(i).
 Id., § 2994-d.3(ii).
 Id., § 2994-d.4.
 Id., § 2994-d.5.
 N.Y. Public Health Law § 2994-a.19.
 Id., § 2994-e.1.
 Id., § 2994-e.2(a).
 Id., § 2994-e.2(b).
 Id., § 2994-e.2(c).
 Id., § 2994-e.3.
 Id., § 2994-g.
 Id., § 2994-g.1.
 Id., § 2994-g.3.
 Id., § 2994-g.4.
 Id., § 2994-g.5.
 Id., § 2994-m.
 Id., § 2994-m.2.
 Id., § 2994-n.
 Id., § 2994-o.
 Id., § 2994-p.
 Id., § 2994-q.1.
 Id., § 2994-q.2.
 Id., § 2994-q.3.
 Id., § 2994-q.4.
 Id., § 2994-s.
 See Chapter 8, Laws of 2010, § 4, which amends N.Y. Public Health Law Article 29-B the DNR law to make it applicable only to mental hygiene facilities. See also new N.Y. Public Health Law § 2994-a.19, which defines “life-sustaining treatment” to include cardiopulmonary resuscitation (CPR). See also FHCDA §4, which amends N.Y. Public Health Law Article 29-B (the DNR law) to make it applicable only to mental hygiene facilities.
 See N.Y. Public Health Law § 2994-aa et seq.
 N.Y. Public Health Law § 2994-ee.
 See n. 40.
 N.Y. Public Health Law § 2984.3.
 N.Y. Public Health Law § 2984.5.
 N.Y. Mental Health Law (MHL) § 81.22.8.
 MHL § 81.22.9(e).
 MHL § 81.22.9(e). See SCPA § 1750-b.1.
 Chapter 8, Laws of 2010, § 25, repealing MHL § 81.22.9(e). See SCPA § 1750-b.1.a.
 Chapter 8, Laws of 2010, § 28.1.
 Chapter 8, Laws of 2010, § 28.2. The NYS Task Force on Life and the Law delivered its recommendations on June 21, 2016. The recommendations called to amend the FHCDA and the Health Care Decisions Act (HCDA) to clarify and streamline the relevant decision-making processes while preserving certain protections in existing law specific to persons with developmental disabilities and patients in or transferred from mental health facilities. New York State Task Force on Life and the Law – Special Advisory Committee, 2016. Recommendations for Amending the Family Health Care Decisions Act to Include Health Care Decisions for Persons with Developmental Disabilities and Patients In or Transferred from Mental Health Facilities. [online] New York: New York State Department of Health. Available at: https://www.health.ny.gov/regulations/task_force/reports_publications/docs/2016-06_recommendations_for_amending_fhcda.pdf [Accessed 8 November 2020]. Also, please see Paul R. Kietzman, A Bridge for People with Developmental Disabilities: The FHCDA and the HCDAPMR Need Some Reconciliation, 16 NYS Bar Assn Health L. J. 90 (2011); Robert N. Swidler, Surrogate Decision Making for Incapable Adult Patients with Mental Disabilities: A Chart of Applicable Laws and Regulations, 16 NYS Bar Assn Health L. J. 93 (2011); Kathryn Jerian & John Dow, New York’s “Black Hole” of Surrogate Decision-Making for Individuals with Intellectual and Developmental Disabilities Without Capacity, 23 NYS Bar Assn Health L. J. 59 (2018); and Robert N. Swidler, The Family Health Care Decisions Act Should Apply to End-of-Life Decisions for Persons Who Are Intellectually Disabled, 23 NYS Bar Assn Health L. J. 64 (2018).
 Chapter 8, Laws of 2010, § 29.
Summary of Amendments
Article 29-CC of the Public Health Law (Current through 2020)
Hospice Care. Extends the FHCDA to decisions by surrogates about hospice care, including the decision to enroll or disenroll in hospice, and consent to the hospice plan of care and modifications to that plan. Addresses the determination of incapacity and ethics review committee requirements for decisions about hospice care.
Changes language to reflect the terminology “developmental disability” rather than “mental retardation.”
Ethics review committee confidentiality – provides an exception for the Justice Center to have access to any information, report or record from a hospital (including the proceedings and records of an ethics review committee) in accordance with the Center’s enabling statute.
Court orders designating surrogates. Lists several grounds for the court to remove a surrogate.
Hospice Care – Patients without Surrogates. Extends the FHCDA to decisions about hospice care for incapable patients without surrogates, including the decision to enroll or disenroll in hospice, and consent to the hospice plan of care and modifications to that plan.
Nurse Practitioners. Defines “attending nurse practitioner” to mean “the nurse practitioner selected by or assigned to a patient in a hospital who has primary responsibility for the treatment and care of the patient.” Amends every reference to “attending physician” in the FHCDA to “attending physician or attending nurse practitioner,” thereby giving the attending nurse practitioner responsibilities and authority that include:
- making a determination that the patient lacks capacity for FHCDA purposes
- making the clinical determinations that are necessary to allow a surrogate decision to withhold or withdraw life-sustaining treatment.
- the obligation to record, and either implement or object to a surrogate’s decision.
- the obligation to refer objections by others to an ethics review committee if the objections cannot otherwise be resolved.
- the authority to provide routine or major medical treatment for isolated patients.
- the authority to make decisions regarding hospice care for an isolated incapable patient.
The chapter also makes related amendments to PHL Article 29-B (Orders not to resuscitate for residents of mental hygiene facilities; Article 29-C (Health care agents and proxies); and Article 29-CCC (Nonhospital orders not to resuscitate).
Hospice Care – Patient without Surrogates. Clarifies that general FHCDA provisions relating to decisions about routine medical treatment apply to patient without surrogates who participate in hospice.
Adds the term “attending physician assistant” to the list of professionals authorized to act in relation to orders pertaining to life-sustaining treatments and orders not to resuscitate and to make capacity determinations for purposes of witnessing and implementing health care proxies. Creates the umbrella term “Attending practitioner” to refer to the attending physician, attending nurse practitioner and attending physician assistant.
Surrogate Decision Making for Incapable Adult Patients Who are Intellectually Disabled A Chart of Applicable Laws and Regulations
Frequently Asked Questions About the Family Health Care Decisions Act
This FAQ Section was prepared by the FHCDA Information Center Editorial Board.
The Editorial Board Members are:
- Kathy Faber-Langendoen, MD, Medical Alumni Endowed Professor of Bioethics and Professor of Medicine SUNY Upstate Medical University, Syracuse, NY
- Jack P. Freer, MD, Romanell Center for Clinical Ethics and the Philosophy of Medicine, University at Buffalo, Buffalo, NY
- Hon. Richard N. Gottfried, Chair, NYS Assembly Health Committee
- Jonathan Karmel, Esq., Associate Counsel, NYS Department of Health, Albany NY
- Deborah Korzenik, Esq., Senior Associate General Counsel, Continuum Health Partners, Inc.
- Tracy E. Miller, Esq., Partner, Bond, Schoeneck & King.
- Salvatore J. Russo, Esq., Former General Counsel, NYC Health and Hospitals Corporation, NYC
- Robert N. Swidler, Esq., VP Legal Services, St. Peter’s Health Partners, Albany NY
(FAQ Page Editor)
The 2020 updates were prepared by:
- Jorge Rivera, Esq., MS, Attorney at Law. Ethics Fellow, Northwell Health. MS in Bioethics, Columbia University.
- Robert N. Swidler, Esq., VP Legal Services, St. Peter’s Health Partners, Albany NY (FAQ Page Editor).
Editorial Board members were jointly appointed by the Chair of the NYS Bar Association Health Law Section and Editor of the NYS Bar Association Health Law Journal. Every entry has been reviewed and approved by at least three Editorial Board Members (in addition to the author of the entry).
FAQ answers reflect the personal viewpoints of the Editorial Board members who approved those items. They are not the official position of NYSBA, or any governmental entity, or the organizations that the Editorial Board members are affiliated with. FAQ answers are offered for the independent and critical consideration by the reader, and should not be regarded as legal advice.
The first set of Q&A’s were posted the first week of June 2010. Q&A’s that were later added or revised are dated.
- Definitions (§ 2994-a)
- Applicability; priority of certain other surrogate decision-making laws and regulations.
- Health care decisions for adult patients by surrogates (§ 2994-d)
- Identifying the surrogate
- Authority of surrogate
- Prior decision of adult patient
- Decision-making standard
- Health care decisions for minor patients
- Health care decisions for adult patients without surrogates. (§2994-g)
- Interinstitutional transfers (§ 2994-l)
- Ethics review committees (§ 2994-m)
- Rights to be publicized (§2994-u)
- Definitions (PHL § 2994-a)
- Q – Adult – The FHCDA defines “Adult” to mean “any person who is eighteen years of age or older or has married,” but the Health Care Proxy Law and other laws also regard a person as an adult if the person is the parent of a child. Why is the FHCDA definition of adult different?
A – The Task Force that developed the FHCDA proposal reasoned that just because a minor — perhaps even a 13 or 14 year old — is the mother or father of a child, does not mean that the minor has the capacity or maturity to decide on their own about whether to forgo life-sustaining treatment. Accordingly, the FHCDA does not treat a minor parent as an “adult”, but rather as an “emancipated minor.” As such, the minor can consent to treatment on par with an adult, but a decision to forgo life-sustaining treatment would require approval of an Ethics Review Committee. (Revised September 8, 2010.)
- Q – Attending practitioner – Why did the FHCDA drop the term “attending physician” and insert in its place the term “attending practitioner”?
- Amendments to the FHCDA and related laws in 2017 and 2019 gave nurse practitioners (2017) and then practitioner assistants (2019) authority to make decisions and write orders akin to those that a practitioner can make or write under the FHCDA. Accordingly, the 2019 amendment created the umbrella term “attending practitioner” to mean the practitioner, NP or PA who selected by or assigned to a patient pursuant to hospital policy, who has primary responsibility for the treatment and care of the patient. (Added December 2020).
- Attending practitioner – Can a resident be an “attending practitioner” for purposes of the FHCDA?
- Neither the Department of Health nor the State Education Department have addressed this. But it seems likely that a resident practicing under a limited permit (Ed. Law §6526) can act as an attending practitioner for FHCDA purposes. It seems less likely that a resident or intern practicing under a licensing exemption (Ed. Law §6528) can act as an attending practitioner for FHCDA purposes. (Revised December 2020).
- Q – Close friend – How does the FHCDA definition differ from the definition in the former DNR Law?
A – The FHCDA simply requires the close friend to sign a statement; the former DNR Law required the close friend to sign an affidavit (i.e. a statement sworn before a notary). Also, the FHCDA makes it clear that the term could include a relative who is not close enough to be on the surrogate list.
- Q – Domestic partner – Where did the definition of “domestic partner” come from?
A – It is substantially similar to the definition that is in PHL 4201, which gives the domestic partner of a deceased person the right to make decisions regarding disposition of the deceased person’s remains.
- Q – Health care – The definition says that “Providing nutrition or hydration orally, without reliance on medical treatment, is not health care under this article and is not subject to this article.” What does “Providing nutrition or hydration orally, without reliance on medical treatment” refer to, and what is the purpose of the phrase?
A – The phrase “providing nutrition or hydration orally, without reliance on medical treatment” simply refers to feeding a patient, i.e., giving the patient food or drink to swallow. So, the FHCDA applies to surrogate decisions regarding the provision of nutrition and hydration by tubes placed in the patient’s nose, stomach, intestines or arms; but it does not apply to decisions regarding giving a patient food or drink to swallow.
- Q – Health or social service practitioner – This definition includes certain licensed health care professionals (i.e., a registered professional nurse, nurse practitioner, physician, physician assistant, psychologist or licensed clinical social worker) but only if the professional is “acting within his or her scope of practice.” A later section says that such professionals can provide the required concurring determination regarding a patient’s decisional capacity. Is that determination within the scope of practice of such professionals?
A – The State Education Department Office of Professions, in an informal response to this question from the Department of Health, indicated any registered professional nurse, nurse practitioner, psychologist or licensed clinical social worker can concur (or not concur) with an attending practitioner’s capacity determination within their scope of practice. . Note that hospitals and nursing homes must adopt written policies identifying the training and credentials of health or social services practitioners qualified to provide concurring determinations in their facilities. Also, just because something is within the scope of practice, the practitioner is not necessarily competent or privileged to do it. (Revised December 2020).
- Q – Life-sustaining Treatment – Why does the FHCDA definition of life-sustaining treatment include the statement that “For the purpose of this article, cardiopulmonary resuscitation is presumed to be life-sustaining treatment without the necessity of a determination by an attending practitioner”?
A – The FHCDA allows a surrogate to make decisions about the withholding or withdrawal of life-sustaining treatment. The statement about resuscitation makes it clear that such authority includes the authority to make decisions about the withholding or withdrawal of resuscitation – that is, to consent to a do-not-resuscitate order. (Revised December 2020).
- Applicability; priority of certain other surrogate
decision-making laws and regulations. (PHL § 2994-b)
- Q – Why does the FHCDA apply only in specified settings (currently, in hospitals, nursing homes and hospice)?
A – Initially, the FHCDA applied only in hospitals and nursing homes, where there would be greater oversight and safeguards. However, based on recommendations by the Task Force on Life and the Law, the FHCDA was amended (i) in 2011 to apply decisions regarding hospice care for incapable patients with surrogates and (ii) in 2015 to apply to decisions regarding hospice care for incapable patients without surrogates.
The Task Force recommended extending the FHCDA further to apply: (i) to other DOH licensed settings such as home health care and ambulatory surgery centers; and (ii) to decisions for patients with intellectual disabilities and who are in or transferred from psychiatric hospitals and units. (Revised December 2020).
- Q – Would the FHCDA apply in an off-campus clinic operated by a hospital?
A – Yes. An “extension clinic” is considered part of the general hospital. (Added September 8, 2010)
- Q – What is a court-appointed guardian under Surrogate’s Court Procedure Act (SCPA) Article 17-A?
A – SCPA Article 17-A creates a process for the court appointment of a guardian. person who is intellectually disabled Such guardian has the authority to make health care decisions, including decisions about life-sustaining treatment, under rules and principles set forth in that article. (Revised December 2020).
- Q – What is SCPA §1750-b, and why does the FHCDA not apply to persons described in that section for decisions to withdrawal life-sustaining treatment?
A – SCPA §1750-b is a section in SCPA Article 17-A that allows a family member, close friend, or surrogate decision-making panel, without being appointed as guardian by the court, to make a decision about life-sustaining treatment for a person with intellectual disabilities who meets certain clinical criteria.
While there was debate whether SCPA §1750-b or the FHCDA should apply to such decisions, the Legislature decided to let SCPA Article §1750-b continue to apply. However, it directed the Task Force on Life and the Law to form a subcommittee to recommend whether the FHCDA rather than SCPA §1750-b should apply to such persons. In 2017, the Task Force approved the report of a Special Advisory Committee that recommended repealing SCPA Article 17-A, and extending the FHCDA, with some amendments, to decisions for persons with intellectual disabilities. Such amendment has not yet been enacted. (Revised December 2020).
- Q – The FHDCA says that it does not apply when consent to treatment is governed by “the mental hygiene law or regulations of the office of mental health (OMH) or the office of mental retardation and developmental disabilities” [now the Office for People with Developmental Disabilities – OPWDD). What are those laws and regulations, and when would they ever apply to a hospital or nursing home patient?
A –OPWDD. OPWDD regulations (14 NYCRR §633.11) govern surrogate consent to treatment for residents of OPWDD-operated and licensed facilities. Such regulations would continue to be applicable to a person who was removed to a general hospital or nursing home for treatment, but not discharged from such OPWDD-operated or licensed facility.
OMH regulations (14 NYCRR §27.9 and §527.8) govern surrogate consent to treatment and objection to treatment for patients of OMH-operated and licensed psychiatric hospitals and hospital units. Such regulations would continue to be applicable to person who was removed to a general hospital or nursing home for treatment, but not discharged from such OMH operated or licensed psychiatric hospital or unit.
In contrast, with respect to a person who was admitted to a hospital or nursing home from an OMH-licensed community residence, consent or objection to treatment would be based on the same principles that would apply to any other hospital patient. So, if the patient lacked decision-making capacity and did not have a health care agent, the FHCDA would govern decisions for the patient.
- Q – What role does a Mental Hygiene Law Article 80 Surrogate Decision Making Committee (SDMC) have since the FHCDA authorizes surrogate decision-making for hospital and nursing home patients?
A – MHL Article 80 and 14 NYCRR Part 710 authorizes a local SDMC to make treatment decisions for persons with mental disabilities who reside or once resided in an OPWDD, OMH or OASAS facility, or who receive or once received certain OPWDD services, and do not have a family member to make such decisions.
SPCA §1750-b makes the SDMC the decision-maker of last resort for persons with intellectual disabilities for purposes of life-sustaining treatment decisions. As a result, the SDMC is the surrogate of last resort for decisions to withdraw or withhold life-sustaining treatment for hospital or nursing home patients with intellectual disabilities.
OPWDD surrogate decision-making regulations make the SDMC the surrogate of last resort for residents of OPWDD facilities. As a result, the SDMC is also the surrogate of last resort for decisions to consent to treatment for those hospital or nursing home patients for whom OPWDD surrogate decision-making regulations apply.
In addition, SDMC is available, but optional, to provide consent to treatment for decisions in a hospital or nursing home for an eligible person when OPWDD regulations and SCPA §1750-b do not apply.
Finally, the SDMC continues to have the same role that it currently has for treatments provided outside of a hospital, nursing home or hospice, for eligible persons.
Under 14 NYCRR Part 710, an SDMC for a person with mental illness can refuse major medical treatment. In some cases, this would be withholding life-sustaining treatment.
- Q – It is very difficult to identify which surrogate decision-making law applies to hospital or nursing home patients who have developmental disabilities or mental illness. Is there a chart that summarizes this, perhaps with examples?
A – Yes. See the document “Surrogate Decision-Making for Patients With Mental Disabilities: A Chart of Applicable Laws and Regulations”, which is linked to the FHCDA Information Center website.
III. Determination of incapacity (§2994-c)
- Q – Can the attending practitioner determine that a patient with an MHL Article 81 court-appointed guardian of the person nevertheless has decision-making capacity?
A – Under the FHCDA, if a guardian is authorized to decide about health care for an adult pursuant to MHL Article 81, the adult is no longer presumed to have decision-making capacity. PHL § 2994-c.1. In such case, the attending practitioner cannot unilaterally override the finding of incapacity in the guardianship order. Rather it would be necessary to bring the new information or circumstances to the court. However, if the original court order directed the guardian to maximize the patient’s participation in decision-making, the attending practitioner’s finding would be relevant to guardian’s obligation. (Added December 2020.)
- Q – The FHCDA states that an adult is presumed to have capacity unless there is an MHL Article 81 guardian but does not similarly exclude the presumption for an adult with an SCPA Article 17-A guardian. Why?
A – Because the FHCDA does not apply to persons who have an SCPA Article 17-A guardian. See § 2994-b.3(a). (Added December 2020.)
- Q – Why does this section require the attending practitioner to “confirm the adult patient’s continued lack of decision-making capacity before complying with health care decisions made pursuant to this article, other than those decisions made at or about the time of the initial determination,” what does “confirm” mean, and what does “at or about the time of the initial determination” mean?
A – A patient’s ability to make decisions may fluctuate from day to day, and a patient may be capable of making some decisions and not others. Accordingly, the FHCDA requires the practitioner to “confirm” the continued lack of capacity, if a surrogate continues to make decisions on the patient’s behalf.
The FHCDA does not impose any standards with respect to confirming incapacity or specify how the determination should be made. Presumably, the determination will require reasonable steps under the circumstances: for a patient who has been in a coma, or who has advanced dementia, it may be as simple as a notation, “incapacity confirmed.” For a patient whose capacity has been more fluid, the practitioner should rely upon his or her judgment about the steps needed to confirm incapacity and document the basis for the confirmation in the medical record.
“At or about the time” is a necessarily imprecise term and allows the attending practitioner to exercise judgment about whether the last determination of incapacity was recent enough to be reliable. (Revised December 2020).
- Q –
Do the FHCDA and Health Care Proxy Law set the same standards for who can determine incapacity and who can concur?
Yes. At one time there were differences, but the standards were conformed by a 2019 amendment. (Added December 2020.)
- Q – Can the attending practitioner make a determination of capacity, without personally examining the patient, e.g., over the phone?
A – Unlike the prior DNR Law, the FHCDA no longer contains a “personal examination” requirement. As a result, the practitioner only needs to comply with the applicable professional standard of care. In most instances, that would require a personal examination, but in limited circumstances it might not, such as when the patient lacks capacity as a result of being unconscious. (Revised December 2020)
- Health care decisions for adult patients by surrogates (§ 2994-d)
- Identifying the surrogate
- Q – Is the “surrogate” a court appointed position?
A – No. It is a person in the highest category on the surrogate list who is available, willing and competent to make decisions for the incapable patient and is identified when there is no health care agent.
- Q – When the highest category is an adult son or daughter, and there is more than one such person, are they all surrogates? If not, then who chooses the surrogate, and on what basis?
A – The FHCDA states that “one person” from the list is the surrogate. While the FHCDA does not specify who identifies the surrogate when more than one person is in the highest category, it necessarily will be the responsibility of the hospital or nursing home to identify the surrogate. In most cases, this should be resolved without difficulty – usually the adult sons and daughters can agree upon the surrogate. In other cases, it will be apparent to the hospital staff that one of the patient’s adult children is best able to speak of the patient’s previous wishes and, if the patient’s wishes are not known, the patient’s best interests. If there is a dispute, efforts should be made to resolve it informally if possible (e.g., through team meetings, ethics consultation or mediation or the hospital ethics process) or else the matter should be referred to the Ethics Review Committee. (Revised September 8, 2010)
- Q – What if someone lower down on the surrogate list objects to the decision of the surrogate, how would the hospital respond? For example, would the hospital withdraw treatment from a patient despite objections by the adult child because a domestic partner is higher in priority than the adult child?
A – The hospital should first try to resolve the dispute informally. If it cannot be resolved informally, the hospital should refer the matter to the Ethics Review Committee. If the higher priority person insists upon the provision of life-sustaining treatment, the hospital cannot discontinue such treatment without a court order. In such proceeding, the court will consider whether the surrogate is meeting his or her obligation to make health care decisions in accordance with the patient’s wishes, including the patient’s religious and moral beliefs; or if the patient’s wishes are not reasonably known and cannot with reasonable diligence be ascertained, in accordance with the patient’s best interests.
If the surrogate directs the withdrawal or withholding of treatment but a lower priority person insists upon the provision of treatment, the hospital generally should seek judicial review before withdrawing or withholding treatment, although it does not have a legal obligation to do so. If the hospital decides to withdraw the treatment in such circumstance, the hospital should notify the objecting person so that such person could seek judicial review if they were inclined to do so. In such proceeding, the court will consider the same issue described above: whether the surrogate met his or her obligation to make a decision based on the patient’s wishes if known, or else best interests. (Revised September 8, 2010)
- Q – Would the following persons be considered a brother or sister for purposes of the FHCDA surrogate list: A half-brother or half-sister? A step-brother or step-sister? A brother or sister by adoption? Would a full brother or sister have priority over a half-brother or half-sister?
A – A half brother or half sister would be considered a brother or sister. A step-brother or step-sister would not be considered a brother or sister. A brother or sister by adoption would be considered a brother or sister. e
- Q – Would the following persons be considered a son or daughter: A step-son or daughter? An adopted son or daughter?
A – A step-son or step-daughter would not be considered a son or daughter, unless the step-son or step-daughter were adopted. An adopted son or daughter would be considered a son or daughter. (Revised September 8, 2010)
- Q – What is the role of the designated representative (NYCRR 415.10) in a nursing home? Is the designated representative and surrogate one and the same?
A – The designated representative is a person (or persons) designated in accordance with 10 NYCRR 415.2(f) to exercise certain rights on behalf of a nursing home resident who lacks capacity. A person does not have authority to make health care decisions for a resident by virtue of being a designated representative. A surrogate is the person identified in accordance with the FHCDA to make health care decisions for a resident who lacks capacity. The designated representative and the surrogate will in many cases be the same individual, but they are not necessarily the same individual.
- Authority of surrogate
- Q – Can the surrogate consent on behalf of a patient to an HIV test under PHL § 2781 be obtained under FHCDA?
A – Yes.
- Q – Can a surrogate consent to experimental treatment?
A – Yes, although if the treatment is part of a study, and therefore constitutes human subject research, other considerations apply (see below).
- Q – Can the surrogate consent to enrolling the patient in federally regulated human subject research?
A – Federal human subject research regulations allow consent for incapable patients to be enrolled in research protocols to be given by a “Legally Authorized Representative.” That term is defined in 45 CFR § 46.102 to include a person “authorized under applicable law to consent on behalf of a prospective subject to the subject’s participation in the procedure(s) involved in the research.” Thus, the FHCDA would appear to give the surrogate such authority in many cases, although the scope of that authority is uncertain.
- Q – Is the surrogate the “personal representative” of the patient under 45 CFR § 164.502(g)(1) (“HIPAA”)?
A – Yes, just as a health care agent under a health care proxy is. If the patient lacks capacity, and the surrogate is empowered to make health care decisions, then the surrogate is the “personal representative” under HIPAA.
- Q – Is the surrogate a “qualified person” under PHL § 18?
A – No, not necessarily. But the surrogate has a right and duty to be informed about the patient’s medical condition, prognosis, diagnosis and the alternatives to the proposed treatment as specified under FHCDA (PHL § 2994-d(3)(c)).
- Q – Does a surrogate’s decision remain valid even after the patient is discharged from the hospital or nursing home?
A – The FHCDA states that it applies only to decisions regarding health care “provided in a hospital.” PHL § 2994-b.1. (The term “hospital” is defined to include nursing homes and hospice as well. See PHL § 2994-a.17-a). But it would be reasonable to read the FHCDA as governing decisions regarding care that is initially provided in the hospital but continues after discharge pursuant to the same consent. Thus, a surrogate could consent on behalf a hospital patient to a course of chemotherapy that begins during hospitalization.
Also, medical orders issued on the DOH-5003 (MOLST) or DOH-3474 (non-hospital DNR) forms do not have to be re-issued in settings outside of the hospital, but if the hospital, nursing home or hospice uses another form to withhold life-sustaining treatment, those forms would not apply in other settings. (Revised December 28, 2019)
- Q – Can a surrogate consent to the patient’s discharge from a hospital, and admission to a post-acute care facility or program?
A – The FHCDA authorizes only surrogate decisions regarding health care “provided in” a hospital, nursing home or hospice. That would clearly include the decisions regarding admission to and discharge from a hospital, nursing home or hospice. But the FHCDA would appear not to govern decisions to admit a patient into other post-acute facilities or programs such as home care or assisted living. Even so, such facilities and programs should be no less willing to accept admission and financial decisions by family members than they were before the FHCDA was enacted. (Added September 8, 2010). (Revised December 2020)
- Q – Can a surrogate direct the discharge of a patient against medical advice?
A – The surrogate can make any decision that the patient, if capable could have made, which could include leaving against medical advice. However, the surrogate is obligated to make decisions based on the patient’s wishes if known, or else the patient’s best interests. So, a provider could seek to block a surrogate’s decision to remove a patient if the decision was inconsistent with that standard. Moreover, if the discharge involved the withdrawal or withholding of life-sustaining treatment, the provider could also oppose the discharge if the decision did not meet the criteria for the withdrawal or withholding of treatment.
- Q – Can a surrogate consent to donation of a patient’s organ’s after death?
A – No, not by virtue of being surrogate. Consent to organ donation is governed by the state’s Uniform Anatomical Gift Act, not the FHCDA. But the UAGA has a decision maker list similar to that in the FHCDA.
- Q – Does the FHCDA give the surrogate access to the patient’s medical record?
A – Yes. The FHCDA gives the surrogate “the right to receive medical information and medical records necessary to make informed decisions about the patient’s health care.” NYS DOH confirmed that this includes the agent’s right to access patient HIV information. Like a health care agent, the surrogate has this right only after it has been determined that the patient lacks capacity and the surrogate’s authority to make health care decisions has commenced.
- Q – Can a surrogate apply for Medicaid on behalf of an incapable patient?
A – Yes. Federal Medicaid regulations allow a written application from “the applicant, an authorized representative, or, if the applicant is incompetent or incapacitated, someone acting responsibly for the applicant.” 42 CFR § 435.907(a). This would seem to include a FHCDA surrogate. (Added September 8, 2010).
- Prior decision of adult patient
- Q – What is the purpose of the “prior decision” clause – the provision that states as follows?
(ii) Nothing in this article shall obligate health care providers to seek the consent of a surrogate if an adult patient has already made a decision about the proposed health care, expressed orally or in writing or, with respect to a decision to withdraw or withhold life-sustaining treatment expressed either orally during hospitalization in the presence of two witnesses eighteen years of age or older, at least one of whom is a health or social services practitioner affiliated with the hospital, or in writing.
A – The FHCDA was not intended to impose surrogate-decision-making upon patients who, prior to losing capacity, made their own decision about treatment. Accordingly, the FHCDA provides that there is no need to seek a surrogate decision if the patient made a prior oral or written decision consenting to a treatment.
However, there were concerns about an attending practitioner withdrawing or withholding life-sustaining treatment without a surrogate decision based only upon information that the patient had at one time verbally stated a wish to forgo such treatment. Accordingly, the FHCDA provides that there is no need to seek a surrogate decision regarding the withdrawal or withholding of life-sustaining treatment only if the patient’s prior decision to forgo life-sustaining treatment was made either (i) orally, during hospitalization, and witnessed by two persons, including one health or social services care practitioner, or (ii) in writing.
In cases that do not meet this requirement –i.e., where the patient’s oral statements were made prior to hospitalization or nursing home admission or without witnesses– a surrogate would make the decision. But the surrogate would still be bound to make a decision in accord with what the patient would have chosen.
Note that when a patient arrives at the hospital with a non-hospital DNR order, or a DNR order from another facility, special rules apply. See Q&A#3 below. (Revised December 2020)
- Q – What sort of writings and oral statements would suffice, and what sort would not?
- A patient’s prior written or oral consent to the provision of treatment should be adequate to rely upon without seeking a surrogate decision if it reasonably evidences that consent. However, a prior oral or written decision to withdraw or withhold life-sustaining treatment should be sufficiently specific to have met the “clear and convincing evidence” standard before it may be relied upon without seeking a surrogate decision, inasmuch as the clause was not intended to change pre-FHCDA reliability standards for prior decisions by the patient himself or herself. This means that the decision must clearly apply to both the life-sustaining treatment under consideration and the medical circumstances, e.g., terminal illness.
- Q – If a patient is admitted to a hospital with a non-hospital DNR order (including a MOLST form), or with a DNR order that was entered at another facility, can that be honored even if the patient had consented to it prior to the current hospitalization?
A – Yes. The provisions governing non-hospital DNR orders and inter-institutional transfers obligate the hospital to honor such orders. Hospital emergency services personnel may disregard a nonhospital order not to resuscitate if they believe in good faith that consent to the order has been revoked, or that the order has been cancelled; or if family members or others on the scene (other than such personnel) object to the order and physical confrontation appears likely; and hospital emergency services physicians may direct that the nonhospital order not to resuscitate be disregarded if other significant and exceptional medical circumstances warrant disregarding the order. If the patient is admitted, the medical orders to withhold life-sustaining treatment remain effective until an attending practitioner examines the patient, whereupon the attending practitioner must continue the order, unless the practitioner determines that the order is no longer appropriate or authorized. There is no requirement to secure another consent from the surrogate. (Revised December 2020)
- Q – The FHCDA makes little mention of advance directives. What is the role of a patient’s advance directives in this law?
A – As discussed above, a living will, less formal documents and/or oral statements by a patient could provide the basis for the withdrawal or withholding of life-sustaining treatment under the “Prior Decision” clause, provided it addresses the treatment decision at issue. In addition, while such advance directives might not qualify as a prior decision, they could still provide sufficient evidence of a patient’s wishes for a surrogate (or on the case of a patient without a surrogate for the hospital or nursing home) to act based on the patient’s known wishes. A health care proxy would still empower a health care agent to make decisions for the patient under the Health Care Proxy Law and enable the patient to choose the person who will decide about treatment.
- Q – If a now-incapable patient who has lost capacity left an advance directive, or had made a prior oral statement, that clearly established the patient’s desire to not have a certain treatment, can a surrogate still require that the treatment be continued?
A – The short, general answer is that the hospital and attending practitioner are obligated to honor this patient’s clear wishes, although they may opt to seek judicial review before implementing the decision. But this is a sensitive question, and different facts may require different guidance.
The FHCDA provides that when a surrogate directs the provision of life-sustaining treatment, a hospital or practitioner that “does not wish to provide treatment,” must nonetheless comply with the surrogate’s decision pending either transfer of the patient to a willing hospital or individual health care provider, or judicial review. PHL § 2994-f.3. But such clause would not seem to be applicable to this case, for at least three reasons: First, the plain language of the clause relates to cases where it is the hospital or practitioner that does not wish to provide treatment; it should not be read to apply to cases where it is the patient who does not want the treatment. Second, when there is a clear prior decision by the patient, there is no need to designate a “surrogate,” and thus there is no surrogate to invoke PHL § 2994-f.3. Third, applying the clause to this case might violate a patient’s constitutional right to reject unwanted treatment.
In sum, the hospital and provider are obligated to honor this patient’s clear wishes. But they retain the option to seek judicial review before implementing the decision. (Revised December 2020)
- Q – Does the prior decision clause apply to decisions by patients who have capacity?
A – No. Nothing in the FHCDA governs decisions by patients with capacity.
- Decision-making standard
- Q – Does a surrogate need clear and convincing evidence of a patient’s wishes to make a decision to direct the withdrawal of life-sustaining treatment?
A – No. Indeed, a key purpose of the FHCDA was to eliminate the clear and convincing standard for clinically appropriate end-of-life decisions. Under the FHCDA, the surrogate must make the decision based on the patient’s wishes “if reasonably known” or else based on the patient’s best interests. There is no requirement that the surrogate specifies on what basis he /she is making the decision for the patient. However, if hospital has reason to believe that the surrogate is not acting in good faith or is making decisions which are clearly contrary to the patient’s known wishes or best interests, then the hospital should not necessarily follow the surrogate’s decision. It may instead opt to convene its informal mediation, consultation or ethics process, or convene the Ethics Review Committee. e
- Q – Do the FHCDA clinical criteria for the withdrawal of life-sustaining treatment apply to the entry of DNR orders? Do they replace the clinical criteria that were in the DNR Law?
A – Yes and yes. For any decision made after June 1, 2010, a surrogate decision to enter a DNR order must be based on the new clinical criteria. In practice, there are unlikely to be many cases where a DNR order could be entered under one law, but not under the other.
- Q – The FHCDA provides that a surrogate may consent to the withdrawal of life-sustaining treatment if one of two standards is met. The first standard requires a determination that “treatment would be an extraordinary burden to the patient.” Who makes that determination? The surrogate or the attending practitioner?
A – The statute is not specific on this point, but it appears to be the surrogate, although the surrogate certainly should make such determination in consultation with the practitioner. The relevant clause states as follows:
- Decisions to withhold or withdraw life-sustaining treatment. In addition to the standards set forth in subdivision four of this section, decisions by surrogates to withhold or withdraw life-sustaining treatment shall be authorized only if the following conditions are satisfied, as applicable:
(a)(i) Treatment would be an extraordinary burden to the patient and an attending practitioner determines, with the independent concurrence of another practitioner, that, to a reasonable degree of medical certainty and in accord with accepted medical standards,
(A) the patient has an illness or injury which can be expected to cause death within six months, whether or not treatment is provided; or
(B) the patient is permanently unconscious; ….”
By specifying the part of the determination that the practitioners have to make, subparagraph (i) implicitly leaves it up to the surrogate to make the other part of the determination.
Second, a determination regarding the burden of the treatment to the patient is a subjective determination that does not appear to belong principally to the practitioner. In fact, the Task Force in When Others Must Choose, made it clear that it is the surrogate who determines “the benefits and burdens of treatment” (p.62). It also emphasized that the concept of “excessive burden” should be understood to reflect the past values, wishes, and preference of the patient (p.113), which suggests a surrogate decision.
Nonetheless, the decision about burden warrants participation and input from the practitioner and a dialogue between the surrogate and the practitioner about the decision. (Revised December 2020)
- Q – Turning to the second standard, who determines whether a treatment would be “inhumane or extraordinarily burdensome”?
- The clause with the second standard allows the withdrawal or withholding of life-sustaining treatment in the following circumstances:
(ii) The provision of treatment would involve such pain, suffering or other burden that it would reasonably be deemed inhumane or extraordinarily burdensome under the circumstances and the patient has an irreversible or incurable condition, as determined by an attending practitioner with the independent concurrence of another practitioner to a reasonable degree of medical certainty and in accord with accepted medical standards.
Like the first standard, this second standard requires an assessment of the burden to the patient, and then a clinical determination regarding irreversibility which is clearly assigned to the practitioner. It therefore seems that the similar structure of subparagraphs (i) and (ii) indicate a similar division of responsibility – the surrogate decides whether the treatment would be “inhumane or extraordinarily burdensome” and the practitioner determines whether there is an irreversible condition. This interpretation would also be consistent with the Task Force’s view of the subjective and non-clinical nature of a burden determination.
Moreover, the statute requires the practitioner’s judgment to be made “to a reasonable degree of medical certainty and in accord with accepted medical standards,” standards that are inconsistent with a subjective judgment about the burden of treatment. Finally, the statute requires Ethics Review Committee approval when a general hospital attending practitioner “objects to a surrogate’s decision under” the inhumane/ extraordinary burden standard to withdraw nutrition and hydration.
But as stated previously, the statute is not specific on this point; the statute simply requires that the conditions are satisfied. Also, as stated previously, the decision about burden warrants participation and input from the practitioner. (Revised December 2020)
- Q – What qualifies as an “irreversible or incurable condition”?
A – The statute does not define the phrase, or explain it further, but from the context, purpose and background it is clear that the phrase relates to medical conditions that are severely debilitating as well as irreversible and incurable. As the Task Force wrote in When Others Must Choose (p.112):
“Other Cases – Decisions to forego life-sustaining treatment may also be appropriate for some patients who are neither terminally ill nor permanently unconscious. For example, an aggressive and painful course of chemotherapy might extend the life of a patient with a chronic degenerative illness who has irreversibly lost the ability to speak or to recognize people. A surrogate might decide that the chemotherapy would be excessively burdensome to the patient, based on the patient’s prior wishes or an assessment of the patient’s interests.
“Decisions to forego life-sustaining treatment for patients who are neither terminally ill nor permanently unconscious require heightened scrutiny….”
- Decisions about life-sustaining treatment for minor patients (§ 2994-e)
- Q – This section provides that if a minor has decision-making capacity, then a parent’s decision to withhold or withdraw life-sustaining treatment may not be implemented without the minor’s consent. The former DNR had required the minor’s “assent.” Is there a difference?
A – No. Under either law, the minor must agree and the decision cannot go forward without the minor’s approval if the minor shows an ability to understand and appreciate the treatment decision issues in question.
- Health care decisions for adult patients without surrogates. (PHL § 2994-g)
- Q – Under the former DNR law, a DNR order could be entered for an incapable patient who did not have a surrogate if the physician and a concurring physician determined that resuscitation would be “medically futile” (i.e., if CPR would “be unsuccessful in restoring cardiac and respiratory function or that the patient will experience repeated arrest in a short time period before death occurs”). Can a practitioner still do that?
A – The language of the standard has changed, but it still ordinarily supports the entry of a DNR order if resuscitation would be “medically futile” as defined above. Under the FHCDA, the practitioner and a concurring practitioner would need to determine that (i) attempted resuscitation (in the event of arrest) would offer the patient no medical benefit because the patient will die imminently, even if the treatment is provided; and (ii) the attempt would violate accepted medical standards. (Revised December 2020)
- Q – With respect to a hospice-eligible patient who is found to lack capacity and who does not have a surrogate, can an attending practitioner or attending nurse practitioner both enroll the patient into hospice and approve a DNR order for the patient?
- Yes. A 2015 amendment to the FHCDA set forth a three-step process to secure a “decision regarding hospice care” for such patient. The process involves (i) a determination by the attending practitioner based on the FHCDA’s standards for a surrogate decision; (ii) a concurring opinion by another practitioner; and (iii) approval; by an ethics review committee. The 2015 bill and bill memo make clear that a “decision regarding hospice care” can include a decision to issue a DNR order or to withdraw or withhold other life-sustaining treatment as part of the hospice plan of care. (Revised December 2020)
- Q – For a hospice patient without a surrogate – is the approval of an Ethics Committee required for every change in the plan of care?
A – No. While the bill language could be clearer on this point, the apparent intent was to require Ethics Committee approval only for the initial plan of care or subsequent major medical or withdrawal of life-sustaining treatment decisions – not routine changes such as medication changes or diet changes. (Added December 28, 2018)
VII. DNR Orders (PHL § 2994-1)
- Q – The FHCDA does not include a clause from the prior DNR law that patients who do not have DNR orders are “presumed to consent to the administration of cardiopulmonary resuscitation in the event of cardiac or respiratory arrest.” Former PHL § 2962.1. Does that mean there is no longer such a presumption? And does that mean that DNR orders can be written without consent?
A – The clause in the prior DNR law simply reflected the principle that in an emergency a patient is presumed to consent to necessary treatment, unless there was a prior objection to such treatment. That principle is still supported by statute and case law: patients are still presumed to consent to potentially beneficial CPR in the event of cardiac arrest unless there is a DNR order. But the former DNR law never explicitly created a duty to attempt resuscitation, and neither does the FHCDA. (Revised December 2020)
- Q – The former DNR law had a provision governing consent to a DNR order by a patient with capacity. Among other things, it set forth witnessing requirements for such consent. There does not seem to be any similar provision in the FHCDA. So, what are the current requirements for consent by a capable patient to a DNR order?
- The FHCDA repealed the former DNR law provision governing consent to a DNR order by an adult patient in a general hospital or nursing home and did not replace it with a parallel clause in the FHCDA. As a matter of constitutional and common law, it is clear that a patient with capacity can consent to a DNR or DNI order, just as a patient with capacity can direct the withdrawal or withholding of other life-sustaining treatments. Under NYS health regulations, hospital patients and nursing home residents have a right to refuse medication and treatment after being fully informed and understanding the probable consequences of such actions. Hospitals and nursing homes may document such decisions in the manner they would document any consent by a patient to the withholding of life-sustaining treatment. e
- Q – The FHCDA does not include a clause from the prior DNR law that allowed “therapeutic exception” to the requirement to secure the consent of a patient with capacity. That is, it allowed a DNR order to be issued based on a surrogate’s consent rather than the patient’s consent when doctors agreed that the discussion about DNR would be harmful to the patient. Was that omitted deliberately? Can a surrogate still consent to a DNR order on behalf of a capable patient?
A – The “therapeutic exception” provision was deliberately omitted from the FHCDA, and a surrogate may no longer make a DNR decision for a patient who has capacity. (Added September 8, 2010)
VIII. Implementation and review of decisions. (PHL § 2994-k)
- Q – Are DNR orders still required to be reviewed by an attending practitioner in hospitals every 7 days and in nursing homes every 60 days? If not, how often are they required to be reviewed?
A – The DNR law, including its specific timeframes for reviewing the orders, no longer applies to hospitals and nursing homes. Instead, the FHCDA requires facilities to devise their own policies regarding review of such orders, and other life-sustaining treatment decisions. Thus, a hospital or nursing home policy could continue to follow the former DNR Law review periods, or alter the review periods, or even require the attending practitioner to set forth a review period for patients on a case by case basis. DNR decisions should be treated like every other decision to withhold or withdraw life-sustaining treatment. If regular medical review is medically indicated, then it should be done.
Note that nonhospital DNR orders must be reviewed every 90 days. (See PHL § 2994-dd(4)). This is the same period as was required under the former PHL § 2977(8). (Revised September 8, 2010)
- Interinstitutional transfers (PHL §§ 2994-l, 2994-ff)
- Q – If a patient is admitted to a hospital with a DNR order that was issued in another hospital or nursing home or a nonhospital DNR order, can the attending practitioner issue an order to continue the DNR order?
A – The order that arrived with the patient remains effective until an attending practitioner examines the patient. That practitioner must then continue the order, unless the practitioner determines that the order is no longer appropriate or authorized. In deciding whether the order is still appropriate, the practitioner should consider whether the difference in response time to a cardiac arrest in the hospital might mean that the prognosis following CPR for the patient would be different, and whether a discussion with the decision-maker for the non-hospital order is warranted. Before canceling the order, the attending practitioner must make reasonable efforts to notify the person who made the decision. If such notice cannot reasonably be made prior to canceling the order, the attending practitioner must make such notice as soon as reasonably possible after cancellation. (Revised December 2020)
- Q – When a patient in a hospital with DNR order is transferred to a nursing home, does the nursing home need to get the resident’s or surrogate’s consent again to re-enter the DNR order? Will the nursing home ever have to get that consent?
A – The FHCDA provides that the attending practitioner at the nursing home can enter the DNR order without having to get another consent. The nursing home will never have to get that consent, unless the DNR order is revoked or suspended, and the issue is whether to enter it again.
- Ethics review committees (PHL § 2994-m)
- Q – Are decision by the Ethics Review Committee (ERC) advisory or binding?
A – Recommendations and advice of the ERC are advisory and nonbinding, except in three limited circumstances:
(i) In a nursing home, ERC approval is required before a surrogate will have the authority to refuse life-sustaining treatment under the standard that applies to residents who are not terminally ill or permanently unconscious (but this is not applicable to DNR decisions);
(ii) In a general hospital, if the attending practitioner objects to a surrogate’s decision to withdraw or withhold artificial nutrition and hydration based on the standard that applies to patients who are not terminally ill or permanently unconscious, the decision cannot be implemented until the ERC determines that the decision meets surrogate decision-making standards; and
(iii) A decision by an emancipated minor (without the consent of a parent or guardian) to have life-sustaining treatment withdrawn or withheld must be approved by the ERC. (Revised December 2020)
- Q – Is it mandatory or recommended in the Act for at least for one committee member to be a person from the community (a person that has no obligation to the facility)?
A – It is mandatory.
- Q – Our hospital has a large ethics committee that now mostly does retrospective case review and policy review. Should that be the FHCDA ethics review committee?
A – Not necessarily. The FHCDA ethics review committee needs to be lean enough to respond to cases in real time. It might be preferable to designate a 5-7 person body for that purpose.
- Q – Who appoints and removes the members of the committee?
A – The hospital or nursing home can decide this and should set it forth in its policy.
- Q – Are there quorum requirements? Voting rules?
A – The hospital or nursing home can decide these matters and should set its rules in its policy.
- Q – What does the FHCDA mean by requiring that the committee “must include at least five members who have demonstrated an interest in or commitment to patient’s rights or to the medical, public health, or social needs of those who are ill.”? Does it require five members in addition to other members who meet the other qualifications?
A – The FHCDA does not require five members with a “demonstrated interest” in addition to other members who meet other qualifications. The law requires that a doctor and nurse serve on the committee and they would certainly meet the “demonstrated interest” test. Rather, the clause should be read to mean (1) that the committee must have at least five members, AND (2) those five members should have some background in the issues the committee will face (e.g., they should be health care professionals, health care advocates, persons with significant experiences as patients or patient’s family members, and other persons with a demonstrated interest or involvement in the issues.) A committee may also have members who have no record of involvement in the interests of patients. But at least five members should have that record.
- Q – Does the ERC displace the role of an existing ethics consultation service? Or for that matter, of the attending practitioner, social worker or chaplain in attempting to resolve disputes?
A – No. The FHCDA expressly recognizes that facilities may first use less formal means to attempt to resolve disputes. Those other means may include already existing ethics subcommittees and ethics consultation services. The FHCDA expressly recognizes that facilities may use less formal means first to resolve disputes. However, if a person connected with the case requests a review by the ERC, it must be provided regardless of whether less formal means have yet been exhausted So the committee should not be regarded as an alternative to arranging a meeting between the care team and the family or seeking an ethics consultation. So, the committee should not be regarded as an alternative to arranging a meeting between the care team and the family, or seeking an ethics consultation. (Revised December 2020)
- Rights to be publicized. (PHL §2994-u)
- Q – The FHCDA requires hospitals and nursing homes to distribute to patients and residents a statement of their rights under the FHCDA. Where can one find that statement?
A – Hospitals should distribute the revised version of DOH publication 1449, “Your Rights as a Hospital Patient in New York State,” which includes the section “Deciding About Health Care: A Guide for Patients and Families.” Nursing Homes should distribute DOH publication 1503, “Deciding About Health Care: A Guide for Patients and Families.” Both are available on the DOH website, as well as on this NYSBA Information Center website.
- Q – Does the statement need to be provided to the patient or resident if the patient or resident lacks decision-making capacity?
A – No, in that case the statement should not be provided to the patient or resident; it should be provided to whoever has authority to make health care decisions for the patient or resident. (Added September 8, 2010)
XII. Nonhospital DNR orders
- Q – Can a FHCDA surrogate consent to a nonhospital DNR order?
A – Yes.
- Q – Can a FHCDA surrogate consent to a nonhospital DNI order using MOLST?
A – PHL Article 29-CCC is ambiguous on this point, but DOH’s answer to this question is yes. Non-hospital DNR orders can also be issued on the standard form available on the DOH website.
- Q – Can a FHCDA surrogate consent to other nonhospital medical orders (medical orders other than DNR/DNI) under Article 29-CCC?
A – No, but the surrogate and others may have clear and convincing evidence of the patient’s wishes. And that evidence may be documented, including on a MOLST form.
- Q – Under the former PHL § 2977(4), the parent or legal guardian of a minor could consent to a nonhospital DNR order for the minor, but under PHL § 2994-cc, there is no provision for consent by the parent or legal guardian or a minor. Can a parent or legal guardian of a minor still consent to a nonhospital DNR order (or a nonhospital DNI order using the MOLST form)?
A – Yes, in enacting Laws of 2010, chapter 8, there was no intent to take away the ability of the parent or legal guardian of a minor to consent to a nonhospital DNR order for the minor. A DNR or DNI order is a medical order signed by a practitioner, and the parent or legal guardian of a minor can consent to a medical order to provide comfort measures only (palliative care) for the minor under PHL § 2504(2). When a DNR order is signed by a practitioner, that is not a case where the minor is receiving no medical treatment (see, Matter of Hofbauer, 47 N.Y.2d 648, 393 N.E.2d 1009, 419 N.Y.S.2d 936 (N.Y. 1979)). The parent or legal guardian of a minor can consent to nonhospital DNR or DNI orders in the same manner that they would consent to them under FHCDA. (Revised December 2020)
XIII. Orders not to resuscitate for residents of mental hygiene facilities
(Chapter 8, §22)
- Q – Why did Chapter 8 amend the former DNR Law (PHL Article 29-B) to make it apply only to mental hygiene facilities?
A – Because the new FHCDA now governs DNR orders in hospitals and nursing homes, but there was a need to continue the applicability of the former DNR law to mental hygiene facilities.
XIV. Health Care Proxy Law (Chapter 8, §§23-24)
- Q – Did Chapter 8 amend NY’s Health Care Proxy Law? How?
A – Yes. Chapter 8 amended NY’s Health Care Proxy Law in three ways. First it added a provision to protect institutional and provider conscience rights with respect to health care agent decisions to the same extent that the FHCDA recognizes such rights with respect to surrogate decisions. Second, it added a clause, similar to one in the FHCDA, that basically states that if an agent directs the provision of life-sustaining treatment, a hospital or provider that does not wish to provide such treatment must nonetheless comply with the agent’s decision pending either transfer of the patient to a willing hospital or individual provider, or judicial review. Finally, the definition of life-sustaining treatment is amended to conform to the FHCDA definition.
- Q – Can a health care agent now make decisions regarding artificial nutrition and hydration even if the patient’s wishes are not reasonably known?
A – No, the health care proxy law still provides that the agent can only authorize the withdrawal of artificial nutrition and hydration based on the patient’s wishes, if reasonably known, and not on the patient’s best wishes if the patient’s wishes are not reasonably known. This restriction is hard to reconcile with the FHCDA, which allows a surrogate to must make decisions on any treatment, including artificial nutrition and hydration, based on the patient’s wishes if reasonably known, or else the patient’s best interests. However, in many instances a health care agent may be able to act as the surrogate for purposes of decisions regarding artificial nutrition and hydration. In the future, the Legislature should amend the Health Care Proxy Law to eliminate the disparity.
Meanwhile, it is useful to note that a health care agent does not need “clear and convincing evidence” of the patient’s wishes to authorize the withdrawal of artificial nutrition and hydration; nor does the law require that the patient’s wishes be in writing. The patient’s wishes only need to be “reasonably known.”
- MHL Article 81 Guardianship Law (Chapter 8, §§23-24)
- Q – Did Chapter 8 amend NY’s MHL Article 81 Guardianship Law? How?
A – Yes. Chapter 8 amended the Guardianship Law to authorize an MHL Article 81 guardian of the person to act as a surrogate under the FHCDA for decisions in hospitals. It also repeals a provision in MHL Article 81 that restricted the authority of a guardian to make life-sustaining treatment decisions.
- Q – Do existing MHL Art 81 guardians automatically gain the authority of FHCDA surrogates, or does a court have to give them that authority?
- – An MHL Art. 81 guardian who had been given authority to make medical treatment decisions for the incapacitated person should now be regarded as having the authority of a surrogate. A guardian who was not given such authority would not be considered a surrogate (unless the guardian qualifies as a surrogate under another basis). e
- Q – Can an MHL 81 guardian direct that a patient be treated over objection?
An MHL Article 81 guardian cannot be given authority to direct the provision of antipsychotic medication over a patient’s objection. Under Rivers v. Katz, 67 N.Y.2d 485, 504 N.Y.S.2d 74, 495 N.E.2d 337 (N.Y. 1986) and subsequent decisions, notably In re Matter of Rhodanna C.B, 36 A.D.3d 106, 2006 N.Y. Slip Op. 7870, 823 N.Y.S.2d 497 (N.Y. App. Div. 2006) a separate court order is necessary for that purpose.
The authority of a guardian to direct the provision of other medical treatment, such as life-saving treatment over objection is less settled. On one hand, the FHCDA treats a guardian as an FHCDA surrogate, PHL § 2994-d, and provides that in general a patient’s decision has priority over a surrogate’s decision. PHL § 2994-c.6. But PHL § 2994-c.6 carefully applies only to instances where incapacity is determined pursuant to the FHCDA bedside procedure, not when there is a judicial determination of incapacity:
- Priority of patient’s decision. Notwithstanding a determination pursuant to this section that an adult patient lacks decision-making capacity, if the patient objects to the determination of incapacity, or to the choice of a surrogate or to a health care decision made by a surrogate or made pursuant to section twenty-nine hundred ninety-four-g of this article, the patient’s objection or decision shall prevail unless: (a) a court of competent jurisdiction has determined that the patient lacks decision-making capacity or the patient is or has been adjudged incompetent for all purposes and, in the case of a patient’s objection to treatment, makes any other finding required by law to authorize the treatment, or (b) another legal basis exists for overriding the patient’s decision.
Accordingly, in Matter of Restaino (AG), 2012 NY Slip Op 22236, 37 Misc. 3d 586, 950 N.Y.S.2d 687 (Sup. Ct.), the court noted that a court appointed guardian can be give more authority than other surrogates “to make medical decisions on behalf of a patient who objects to medical treatment.”
Ultimately, to answer the question in a specific case, it is necessary to review the guardianship order. If it explicitly addresses the guardian’s authority to direct treatment over objection, then the guardian has that authority. Even if refers generally to the guardian’s authority to consent to treatment, it may be clear from the context that it includes the authority to direct treatment over objection (for instance if the entire reason for the guardianship is to overcome an incapable patient’s objection t treatment. But if there is no express authority or strong contextual support, the petitioner or provider should seek a clarification before assuming the guardian’s authority to direct treatment over objection. (Added December 2020)
XVI. SCPA §1750-b Guardianship (The Health Care Decisions Act for Intellectually Disabled Persons) (Chapter 8, §§23-24)
- Q – How did Chapter 8 amend the Health Care Decisions Act for Mentally Retarded (now Intellectually Disabled) Persons (SCPA §1750-b?)
A – Chapter 8 amended SCPA §1750-b to insert a definition of “life-sustaining treatment.” It also amended §1750-b to allow the Willowbrook Consumer Advisory Board to act as the HCDA guardian for class members.
NYS Department of Health Materials
NYS Task Force on Life and the Law Reports Relating to the FHCDA
- When Others Must Choose, NYS Task Force on Life and the Law (1992)
- Recommendation that the FHCDA be Extended to include Hospice Care (2010)
- Recommendations for Extending the Family Health Care Decisions Act to Medicare and/or Medicaid‐Certified and State‐Licensed Agencies, Programs, and Settings (2013)
- Recommendations for Amending the Family Health Care Decisions Act to Include Health Care Decisions for Persons with Developmental Disabilities and Patients in or Transferred from Mental Health Facilities (2016)
Articles about the FHCDA in NYSBA Publications
In chronological order
- New York’s Family Health Care Decisions Act: The Legal and Political Background, Key Provisions and Emerging Issues, Swidler, R., NYS Bar Journal June 2010, p. 18.
- The Family Health Care Decisions Act: A Summary of Key Provisions, Swidler, Robert N., NYSBA Health Law Journal 15 1 SPRING 2010 32.
- The Family Health Care Decisions Act: A New Chapter in Health Care Decision Making, Enea, Anthony J. , NYSBA Trusts and Estates Law Journal, 43 2 SUMMER 2010 39.
- Special Edition: Implementing the Family Health Care Decisions Act, NYSBA Health Law Journal 16 1 SPRING 2011.
- Implementing the Family Health Care Decisions Act: Introduction to the Special Edition Gottfried, Richard N., Chair, New York State Assembly Committee on Health, NYSBA Health Law Journal 16 1 SPRING 2011 20.
- Frequently Asked Questions About the Family Health Care Decisions Act Editorial Board, NYS Bar Association Family Health Care Decisions Act Information Center, NYSBA Health Law Journal 16 1 SPRING 2011 21.
- Honoring Patient Preference at the End of Life: The MOLST Process and the Family Health Care Decisions Act Lipson, Karen; Karmel, Jonathan, NYSBA Health Law Journal 16 1 SPRING 2011 35.
- An Educational Flow Chart to Assist Physicians in Understanding the Family Health Decisions Act and Its Impact on Do Not Resuscitate Orders Hallarman, Lynn, M.D. , NYSBA Health Law Journal 16 1 SPRING 2011 44.
- Making the Family Health Care Decisions Act Apply to Hospice Patients McMahon, Kathy 16 1 SPRING 2011 49 Extending the Family Health Care Decisions Act to Home Care Cardillo, Alfredo D., M.S.W. , NYSBA Health Law Journal 16 1 SPRING 2011 56.
- Ethics Committees Under the Family Health Care Decisions Act: From Policy to Practice Miller, Tracy E. , NYSBA Health Law Journal 16 1 SPRING 2011 61.
- Educating Ethics Review Committees in a More Humanistic Approach to Relational Decision Making Morrissey, Mary Beth, NYSBA Health Law Journal 16 1 SPRING 2011 65.
- Bioethics Consultation Before and After the Family Health Care Decisions Act Powell, Tia, M.D.; Lipman, Hannah I., M.D., M.S. , NYSBA Health Law Journal 16 1 SPRING 2011 71.
- Ethics and Clinical Practice Guided by the Family Health Care Decisions Act Varughese, Mathew; Wilson, Ross, M.D.; Zisfein, James, M.D.; Keller, Allen, M.D.; Neveloff Dubler, Nancy; for the New York City Health and Hospitals Corporation Bioethics Council, NYSBA Health Law Journal 16 1 SPRING 2011 76.
- The Family Health Care Decisions Act and Human Subjects Research in New York State Roxland, Beth E. , J.D., M.Bioethics; Zoubul, Carrie S., J.D., M.A. , NYSBA Health Law Journal 16 1 SPRING 2011 84.
- A Bridge for People with Developmental Disabilities: The FHCDA and the HCDAPMR Need Some Reconciliation Kietzman, Paul R. , NYSBA Health Law Journal 16 1 SPRING 2011 90.
- Surrogate Decision Making for Incapable Adult Patients with Mental Disabilities: A Chart of Applicable Laws and Regulations, NYSBA Health Law Journal Swidler, Robert N. 16 1 SPRING 2011 93.
- Albany Medical Center Family Health Care Decisions Act Algorithms Holley, Danielle E., J.D., M.S.; Otto, Sheila, R.N., B.S.N., M.A., NYSBA Health Law Journal 16 1 SPRING 2011 99 .
- Comparing the FHCDA to Surrogate Decision- Making Laws in Other States Pope, Thaddeus Mason, NYSBA Health Law Journal 16 1 SPRING 2011 109 .
- The Palliative Care Information Act and Its Applicability to Cases Subject to the Family Health Care Decisions Act Leven, David C., NYSBA Health Law Journal 16 1 SPRING 2011.
- Overview of End of Life Law in New York State, Rikoon, Jonathan J.; Serle, Mordy; Yang, Louise D., NYSBA Trusts and Estates Journal, 44 3 FALL 2011 10.
- Health Care Proxies – Ten Difficult Issues, Swidler, R., July/August 2016, p. 28
- A Proposal to Restore Medical Futility as a Clinical Basis for a DNR Order Under New York Law, Fins, Joseph J.; Swidler, Robert N. 22 1 SPRING 2017 37
- New York’s “Black Hole” of Surrogate Decision-Making for Individuals with Intellectual and Developmental Disabilities Without Capacity Jerian, Kathryn; Dow, John, NYSBA Health Law Journal 23 2 FALL 2018 59
- The Family Health Care Decisions Act Should Apply to End-of-Life Decisions for Persons Who Are Intellectually Disabled, Swidler, Robert N. , NYSBA Health Law Journal 23 2 FALL 2018 64
- Life-Sustaining Treatment Decisions For Unfriended Nursing Home Residents: Application of a Clinical Ethics Algorithm Finger, Howard J.; Zisfein, James; Luong, Khoi; Dury, Cheryl A.; Amin, Ravindra; Hahn, Steven; Shkolnik, Albina; Neveloff Dubler, Nancy, NYSBA Health Law Journal 23 2 FALL 2018 80
- Why Not “Act Now”: Can a Simpler Health Care Proxy Advance the Goal of Supported Decision-Making? Kietzman, Paul, NYSBA Health Law Journal 23 2 FALL 2018 90
- Supported Decision-Making: What You Need to Know and Why Booth Glen, Kristin, NYSBA Health Law Journal 23 2 FALL 2018 93
- Life -Sustaining Treatment Decisions for Unbefriended Nursing Home Residents: Application of a Clinical Ethics Algorithm in Conjunction With the MOLST Form Finger, Howard J; Dury, Cheryl A.; Sansone, Giorgio; Humphrey, Sherry; Neveloff Dubler, Nancy, NYSBA Health Law Journal 25 1 WINTER 2020 95
End of Life Decisions - The Law in New York
A 30-minute video primer by Robert N. Swidler, Editor, NYSBA Family Healthcare Decisions Act Resource Center (2019).