Hospice and the Family Health Care Decisions Act Susan Conceicao, LCSW-R, ACHP-SW

1. Hospice and the Family Health Care Decisions Act Susan Conceicao, LCSW-R, ACHP-SW Robert E. Leamer, JD, FACHE Bernard Lee, MD

2. Role of the Ethics Committee Three Major Functions: • Providing Ethics Consultations • Developing or revising policies relating to clinical ethics • Facilitating discussion about ethical issues

3. What is Ethics Consultation? • A service provided by an individual consultant, team or committee to address the ethical issues involved in a specific clinical case. Its central purpose is to improve the processes and outcomes of patient care by helping to identify, analyze and resolve ethical problems (Dubler et al 2009)

4. Standards for Ethics Consultation • Easily accessible • Well-publicized • Broadly based • Clear process for gathering information and ensuring that all relevant stakeholders are heard.

5. Composition of an Ethics Committee May include: • Physicians • Nurses • Social Workers • Chaplain • Quality Improvement Manager • Attorney • Educator

6. Goals • Promoting patient rights • Promoting shared decision-making between patients (and/or their surrogates if incapacitated) and their clinicians • Promoting fair policies and procedures that maximize the outcome of achieving good, patient centered outcomes.

7. Requirements under Family Health Care Decisions Act • Requires at least 5 members with “a commitment to patient/resident rights or interest in the needs of those who are ill.” • 3 members must be health and social service practitioners, with at least one registered nurse and one physician • 1 member must be individual not employed or under any contractual agreement with the facility • Facility Resident Council can appoint two members, neither of which can be resident or family member of a resident

8. MJHS Ethics Consultation Service • Multidisciplinary • Includes at least one representative from senior management • One representative from MJHS Board of Directors • Health professional not employed by MJHS • Community representative (not a health professional)

9. Goals of MJHS Ethics Committee • Propose policies and procedures related to ethical issues • Develop consultation mechanism for real-time case review, including access to committee review for challenging cases • Develop ethics-based quality improvement and education/training for MJHS staff

10. Consultation Process • A request for an ethics consultation can be made by any employee of MJHS Hospice • 1 or 2 “Ethics Coordinators” will be on-call for Ethics consultations during business hours • The Coordinator will acquire case-related information Plan may involve: • Clarification of the legal or ethical framework for decision-making or documentation • Effort to mediate a conflict through individual or joint discussions with those involved with the case • Presenting the case to an Ethics Subcommittee for broader review

11. Common Ethical Concerns • Moral Issues • Human Dignity • Justice • Beneficence • Respect for Autonomy • Informed Consent • Medical Futility

12. The Evolving Law of Healthcare Decisionmaking Leading to the Family Health Care Decisions Act

13. Developing Case Law • 1914 Schloendorff v. Society of New York Hospital Establishing the individual’s right to autonomous decision-making • 1981 Eichner and Storar “It was the best of times, it was the worst of times … • 1988 Westchester County Medical Center “Clear and convincing” is anything but …

14. Changing Statutory Landscape • 1987 Orders Not to Resuscitate (DNR law) • 1990 Health Care Agents and Proxies • 2010 Family Health Care Decisions Act

16. Family Health Care Decisions Act – A New Pathway with Protection § 2994-q. Effect on other rights. 1. Nothing in this article creates, expands, diminishes, impairs, or supersedes any authority that an individual may have under law to make or express decisions, wishes, or instructions regarding health care on his or her own behalf, including decisions about life-sustaining treatment. 2. Nothing in this article shall affect existing law concerning implied consent to health care in an emergency.  

17. Family Health Care Decisions Act – A New Pathway with Protection § 2994-o. Immunity 2. Providers. No health care provider or employee thereof shall be subjected to criminal or civil liability, or be deemed to have engaged in unprofessional conduct, for honoring reasonably and in good faith a health care decision made pursuant to this article or for other actions taken reasonably and in good faith pursuant to this article.

18. Authorizing care and providing consent under the Family Health Care Decisions Act Step One – A determination is made by a provider that a health care decision is required.

19. Provider Determines that a Healthcare Decision is Required Does Patient Lack Capacity? NO YES No need for surrogate Does patient have valid healthcare proxy? NO YES Follow PHL Article Follow PHL Article 29C 29CC FHCDA Healthcare Agents and Proxies

20. Determination of incapacity Presumption of capacity § 2994-c. For purposes of this article, every adult shall be presumed to have decision-making capacity unless determined otherwise pursuant to this section or ...

21. Determination of incapacity § 2994-c. 2. Initial determination by attending physician. An attending physician shall make an initial determination that an adult patient lacks decision-making capacity to a reasonable degree of medical certainty. Such determination shall include an assessment of the cause and extent of the patient's incapacity and the likelihood that the patient will regain decision-making capacity.

22. Determination of incapacity § 2994-a. Definitions. 5. "Decision-making capacity" means the ability to understand and appreciate the nature and consequences of proposed health care, including the benefits and risks of and alternatives to proposed health care, and to reach an informed decision. 5-a. "Decisions regarding hospice care" means the decision to enroll or disenroll in hospice, and consent to the hospice plan of care and modifications to that plan.  

23. Determination of incapacity Concurring determinations   § 2994-c. 3. (a) An initial determination that a patient lacks decision-making capacity shall be subject to a concurring determination, independently made, where required by this subdivision.   (iii) With respect to decisions regarding hospice care for a patient in a general hospital or residential health care facility, the health or social services practitioner must be employed by or otherwise formally affiliated with the general hospital or residential health care facility.

24. Determination of incapacity Informing the patient and surrogate   § 2994-c. 4. Notice of a determination that a surrogate will make health care decisions because the adult patient has been determined to lack decision-making capacity shall promptly be given: (a) to the patient, where there is any indication of the patient's ability to comprehend the information; (b) to at least one person on the surrogate list highest in order of priority listed when persons in prior classes are not reasonably available . . .

25. Determination of incapacity Priority of patient's decision § 2994-c. 6. 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.

26. Determination of incapacity Confirmation of continued lack of decision-making capacity § 2994-c. 7. An attending physician shall 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. A concurring determination of the patient's continued lack of decision-making capacity shall be required if the subsequent health care decision concerns the withholding or withdrawal of life-sustaining treatment. Health care providers shall not be required to inform the patient or surrogate of the confirmation.

27. Determination of incapacity Limited purpose of determination. § 2994-c. 5. A determination made pursuant to this section that an adult patient lacks decision-making capacity shall not be construed as a finding that the patient lacks capacity for any other purpose.

28. Decisionmaking Standards Are there potential surrogate decisionmakers? YES NO Use priorities list to Follow § 2944-g procedures identify surrogate -For Treatment -Routine Medical Treatment • in accordance with patient’s wishes -Major medical treatment • in patient’s “best interest -Decisions to withhold or withdraw -Decisions to withhold or life sustaining treatment withdraw treatment follow § 2994-d 5

29. Decisionmaking Standards § 2994-d. Health care decisions for adult patients by surrogates. 1. Identifying the surrogate. One person from the following list from the class highest in priority when persons in prior classes are not reasonably available, willing, and competent to act, shall be the surrogate for an adult patient who lacks decision-making capacity. However, such person may designate any other person on the list to be surrogate, provided no one in a class higher in priority than the person designated objects: (a) A guardian authorized to decide about health care pursuant to article eighty-one of the mental hygiene law; (b) The spouse, if not legally separated from the patient, or the domestic partner; (c) A son or daughter eighteen years of age or older; (d) A parent; (e) A brother or sister eighteen years of age or older; (f) A close friend.

30. Decisionmaking Standards (a) The surrogate shall make health care decisions: (i) in accordance with the patient's wishes, including the patient's religious and moral beliefs; or (ii) if the patient's wishes are not reasonably known and cannot with reasonable diligence be ascertained, in accordance with the patient's best interests. An assessment of the patient's best interests shall include: consideration of the dignity and uniqueness of every person; the possibility and extent of preserving the patient's life; the preservation, improvement or restoration of the patient's health or functioning; the relief of the patient's suffering; and any medical condition and such other concerns and values as a reasonable person in the patient's circumstances would wish to consider. (b) In all cases, the surrogate's assessment of the patient's wishes and best interests shall be patient-centered; health care decisions shall be made on an individualized basis for each patient, and shall be consistent with the values of the patient, including the patient's religious and moral beliefs, to the extent reasonably possible.

31. Decisionmaking Standards "Life-sustaining treatment" means any medical treatment or procedure without which the patient will die within a relatively short time, as determined by an attending physician to a reasonable degree of medical certainty. For the purpose of this article, cardiopulmonary resuscitation is presumed to be life-sustaining treatment without the necessity of a determination by an attending physician.  

32. Decisions to withhold or withdraw life-sustaining treatment Decisions by surrogates to withhold or withdraw life-sustaining treatment (including decisions to accept hospice plan of care that provides for the withdrawal or withholding of 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 physician determines, with the independent concurrence of another physician, 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; or (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 physician with the independent concurrence of another physician to a reasonable degree of medical certainty and in accord with accepted medical standards. (b) In a residential health care facility, a surrogate shall have the authority to refuse life-sustaining treatment under subparagraph (ii) of paragraph (a) of this subdivision only if the ethics review committee, … reviews the decision and determines that it meets the standards set forth in this article. This requirement shall not apply to a decision to withhold cardiopulmonary resuscitation.   c) In a general hospital ...

33. Patients without Surrogates Decisions to withhold or withdraw life-sustaining treatment (a) A court of competent jurisdiction may make a decision to withhold or withdraw life-sustaining treatment for an adult patient who has been determined to lack decision-making capacity pursuant to section twenty-nine hundred ninety-four-c of this article if the court finds that the decision accords with standards for decisions for adults set forth in subdivisions four and five of section twenty-nine hundred ninety-four-d of this article. (b) If the attending physician, with independent concurrence of a second physician designated by the hospital, determines to a reasonable degree of medical certainty that: (i) life-sustaining treatment offers the patient no medical benefit because the patient will die imminently, even if the treatment is provided; and (ii) the provision of life-sustaining treatment would violate accepted medical standards, then such treatment may be withdrawn or withheld from an adult patient who has been determined to lack decision-making capacity pursuant to section twenty-nine hundred ninety-four-c of this article, without judicial approval. This paragraph shall not apply to any treatment necessary to alleviate pain or discomfort. (c) With respect to a decision regarding hospice care for a patient in a general hospital or residential health care facility, the second physician must be designated by the general hospital or residential health care facility.  

34. Adult Patient Without Capacity: Surrogate Designation Does patient have a health care proxy? Follow heath care proxy YES NO Without a healthcare proxy, the hospice must identify the appropriate candidate Designate and document in the medical record the identity and authority of the surrogate Was surrogate identified? Seek legal counsel YES NO Continue hospice care; consult Ethics Review Committee Does someone else on the surrogate list object? YES NO Continue hospice care; consult legal counsel Does patient object? YES NO Follow surrogate’s decision based on a patient’s wishes or in patient’s best interests Withholding or withdrawing life sustaining treatment allowed; refer to Ethics Committee if there is a disagreement Does the decision involve withholding or withdrawing treatment? NO YES

35. In Summary The Health Care Proxy remains the best tool for surrogate decision making. The FHCDA provides a new effective route for surrogate decision making, but requires health care professionals follow a prescribed process. Health care entities need to translate the law into clear policies and useable forms. 

36. Case Presentation # 1 • Pt is a 92 year old female residing in a nursing home referred for hospice services. • Pt’s hospice diagnosis is Adult Failure to Thrive; co-morbidities include dementia, osteoporosis, history of left hip arthoplasty. • The facility SW states that the patient has no friends or family. • According to facility staff, the patient does not have decision-making capacity.

37. Questions • What is the appropriate process to have patient signed on to the hospice program? • What are the necessary steps in terms of determining decision-making capacity, and in confirming that there is no-one, as per FHCDA, to sign election of benefits?

38. Case Presentation # 2 • Pt. is a 79 year old male with a brain tumor. Pt has history of severe anxiety, and is depressed. He has been non-adherent with medication regimen and resistant to receiving help from hospice staff and from home health aides. • Pt. resides with his partner who is 79 years of age; he is very frail and has a history of alcohol use which may be current. He is very anxious and has been resistant to allowing staff to enter the home. • Partner is patient’s health care agent. • Pt has a brother out-of state who would like patient to go to a facility.

39. Questions • At what point would the patient be assessed as lacking decision-making capacity? • While the partner is the health care agent, how would the team address his apparent inability to make decisions that are in the patient’s best interest? • Would the brother have any ability to impact on the situation?

40. Case Presentation # 3 • Pt is an 84 year old male with leukemia. Pt resides with his elderly wife. Both patient and spouse exhibit deficits in short-term memory. • Patient’s goals of care include wanting to remain at home. • Wife is very anxious and overwhelmed by staff coming into the home and the presence of equipment (oxygen) She wants the patient to go to a facility.

41. The patient has a son living out-of state. • He is experiencing guilt due to having moved way • Relationship between the patient and wife is conflictual. • Wife will not allow the patient to complete a health care proxy.

42. Questions • In absence of health care proxy, would spouse be viewed automatically as surrogate decision-maker, in spite of fact that she is not in agreement with patient’s expressed goals of care? • How can the issue of decision-making capacity in patient with poor insight into issues of safety and caregiving be considered?

43. Ethical and Legal Issues Conclusions • Health professionals benefit from a working knowledge of the key ethical principles that guide palliative care • Practicing at the highest ethical standard is a cornerstone of professionals • There is help when needed