Health Care Decisions for Persons with Developmental Disabilities: Ethical Considerations Legal Constraints

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Andrea Hodge
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1 Heath Care Decisions for Persons with Deveopmenta Disabiities: Ethica Considerations Lega Constraints Lawrence R. Faukner, Esq. Arc of Westchester 1

2 Right to Privacy and Confidentiaity HIPAA Pubic Heath Law Menta Hygiene Law Issues Authorized parties Need to know Access to Protected Heath Information 2

3 Fundamentas in New York Individua with capacity can make decision for him/hersef (Pubic Heath Law, case aw). Informed Consent for medica treatment. Surrogate must make decision in best interests of person who acks capacity Not a standard of substituted decision making. 3

4 Capacity Understand and appreciate the nature and consequences of proposed treatment Understand the benefits and significant risks of proposed treatment 4

5 Informed Consent 5 Fu expanation of proposed procedure Description of attendant discomforts and risks Description of any benefits Discosure of aternative procedures Individua is free to withdraw consent at any time Exercise choice in a vountary manner

6 Emergencies: Lack of Capacity Pubic Heath Law Section OPWDD Reguations 14NYCRR633.11(1)(ii) 6

7 Surrogate Decision Making Committee: Lack of Capacity Menta Hygiene Law Artice 80 7

8 OPWDD: Lack of Capacity 8 Medica Consent, 14NYCRR Guardian awfuy empowered or proxy Activey invoved spouse Activey invoved parent Activey invoved adut chid Activey invoved adut sibing Activey invoved adut famiy member C.A.B. S.D.M.C. Proceed in order isted Roe of court Location of medica care

9 FHCDA/HCDAPMR FHCDA: Famiy Heath Care Decisions Act HCDAPMR: Heath Care Decisions Act for Persons with Menta Retardation 9

10 FHCDA: Appicabiity Appies to surrogate decisions in a hospita or residentia heath care faciity (nursing home). Does not appy to decisions for incapabe patients: Who have a heath care agent Have a court appointed guardian under SCPA 1750-b For whom decisions concerning ife sustaining treatment (LST) may be made by a famiy member or cose friend under SCPA 1750-b (note: ony LST decisions covered by 1750-b) For whom treatment decisions may be made pursuant to OPWDD or OMH surrogate decision making reguations (SDMC) Who previousy made a decision to forgo LST either in writing or oray in a hospita before witnesses. 10

11 FHCDA: Decisions, cont d. DNR Orders: considered part of medica treatment, therefore existing statute on DNR orders is removed. New section of aw on DNR in the community. New section of aw on DNR for persons with MR/DD residing in MH faciities. 11

12 DNR Orders: Now Where? The FHCDA itsef [new PHL Art 29-CC]; A new PHL Art. 29-CCC [DNRs outside of hospitas and nursing homes]; A drasticay amended PHL Art 29-B; and some generay conforming amendments to other statutory sections of the PHL, MHL and SCPA. Amended to incude hospice care. 12

13 Guardianship Artice 17-A Surrogate s Court Procedure Act Artice 81, Menta Hygiene Law Deineated in order 13

14 SCPA 1750-b: History Appies to Artice 17-a Guardians Famiy guardians of persons with menta retardation, March 16, 2003 Corporate guardians of persons with menta retardation, 2003 Guardians of persons with other deveopmenta disabiities,

15 SCPA 1750-b: History, cont d. Quaified famiy members of persons with menta retardation or other deveopmenta disabiities for LST decisions ony, 2009 Consumer Advisory Board for Wiowbrook cass members added as a surrogate decision maker with passage of the FHCDA in

16 SCPA 17-a: Petition Either two icensed physicians or a icensed physician and a icensed psychoogist must certify: that the person is incapabe of managing themseves or their affairs because of MR or DD; that their condition is permanent or ikey to continue indefinitey; and whether the person has the capacity to make his/ her own heath care decisions. 16

17 SCPA 1750-b: Retroactive Determined by Court of Appeas to appy retroactivey to previousy appointed 17-A guardians. Matter of MB 17

18 Genera Professiona Medica Care Uness prohibited, guardian s can make heath care decisions. Incuding decisions to withhod or withdraw ife sustaining treatment. Not meant to encourage suicide, euthanasia or denia of aggressive treatment. 18

19 Best interests 19 Best interests Dignity and uniqueness of the individua Preservation/restoration of heath Reief of suffering Unique nature of artificia nutrition and hydration Entire medica condition of the person Previousy expressed position cear and convincing" evidence. Must advocate for fu and efficacious provision of heath care, incuding ifesustaining treatment..

20 Decision Must NOT Be Infuenced by: Presumption of ess then fu and equa rights, protection, respect, medica care or dignity. Financia considerations, incuding effect on guardian. 20

21 Guardian Right to receive a reevant medica information. 21

22 Quaified Famiy Members Appies ony to withdrawa or withhoding ife sustaining treatment 22

23 Quaified Persons Activey invoved spouse Activey invoved parent Activey invoved parent Activey invoved adut sibing Activey invoved adut famiy member. 23

24 Life Sustaining Treatment - The FHCDA [PHL 2994-a 19] creates a new/expanded definition of LST - any medica treatment or procedure without which the patient wi die within a reativey short time, as determined by an attending physician to a reasonabe degree of medica certainty.cardiopumonary resuscitation is presumed to be ifesustaining treatment without the necessity of a determination by an attending physician. [appies in acute care hospitas and SNFs.] - The same definition of LST was aso added by FHCDA to the HCP statute [new PHL a.] and a simiar amendment to the HCDAPMR [new SCPA 1750-b 4.] - In other words CPR is ogicay re-united into the concept of LST, and it woud have APPEARED that every incapacitated patient or person, regardess of setting, now has a process to obtain both DNR and other LST decisions BUT FHCDA settings created probems. 24

25 Life Sustaining Treatment Must advocate for fu medica care. New capacity decision by attending physician. Confirmation of ack of capacity by another physician or icensed psychoogist. 25

26 Medica Condition Termina ( death ikey w/i 1 year) or Permanenty unconscious or Medica condition requiring ife sustaining treatment is irreversibe, may continue indefinitey. AND: 26

27 Medica Condition, cont d. AND: Extraordinary burden imposed by the ife sustaining treatment in ight of condition (NOT DD) and expected outcome, AND; If withdrawa or denia of artificia nutrition or hydration there is no reasonabe hope of maintaining ife OR Artificia nutrition or hydration is an extraordinary burden. 27

28 Notice 48 hours before withdrawing or at eariest possibe time for denia of ife sustaining treatment. Notice To: Person receiving treatment, uness immediate and sever injury from such notice determined by physician and consutation. CEO of faciity or OPWDD MHLS 28

29 Objections to Decision to Withhod or Withdraw Life-sustaining Treatment the person with MR (assuming s/he was informed ) a parent or adut sibing (substantia and continuous contact) the attending physician any other heath care practitioner providing services to the person the agency Executive Director MHLS OPWDD Commissioner [or DDSO director] 29

30 Objections, cont d. Objections may be made oray or in writing Objection suspends guardian s decision, pending judicia review uness the suspension woud be ikey to resut in the death of the mentay retarded person Objecting party must notify guardian and other parties who coud have objected if decision is suspended. 30

31 Specia Proceeding in Court Certain parties are authorized to initiate a specia proceeding in court to resove any dispute arising under the new aw: the guardian the attending physician the DDSO director or agency Executive Director MHLS OPWDD Commissioner 31

32 Concerning Hospice: Time of Decision and Notice When ife sustaining treatment is decined NOT theoretica treatment Treatment must be offered and decined. Enroment in hospice may or may not represent such a decision. Facts of decision determine notice requirements 32

33 Heath Care Provider Obigations Doctors and hospitas are generay required to compy with heath care decisions made by a guardian in good faith. Hospita exception for formay adopted written poicies. Simiar exception for individua heath care providers. Immunity for providers and guardians. 33

Family Health Care Decisions Act (FHCDA)

Family Health Care Decisions Act (FHCDA) Public Health Law Article 29-CC Added by L. 2010, Ch. 8 Applies to general hospitals and residential health care facilities (nursing homes) Went into effect on