A1352 1R

An Act concerning dementia and advance care planning, and supplementing Title 26 of the Revised Statutes.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. This act shall be known and may be cited as the “Dementia Dignity and Advance Care Planning Act.”

2. The Legislature finds and declares that:

a. Alzheimer’s disease and related dementias are among the leading causes of death in New Jersey, imposing profound emotional and financial burdens on patients and families.

b. Current State law recognizes the right of competent adults to make advance decisions regarding health care, but does not adequately provide for dementia-specific directives tailored to the unique challenges of progressive cognitive decline.

c. Many individuals wish to avoid burdensome interventions, forced feeding, or repeated hospitalizations once they reach advanced stages of dementia, when quality of life has irreversibly diminished.

d. It is the public policy of this State to respect the dignity, autonomy, and previously expressed wishes of individuals living with dementia by authorizing Dementia-Specific Advance Directives (DSADs), establishing clear standards for “comfort feeding only,” and ensuring that such directives are honored across all care settings.

3. ¹[“Advanced dementia” means a stage of progressive neurodegenerative disease in which the individual is permanently unable to communicate meaningfully, recognize loved ones, or perform basic activities of daily living without total assistance.]¹

“Comfort feeding only” means an order that directs caregivers to offer oral food and fluids by hand, if and as tolerated, for comfort purposes, and prohibits artificial nutrition or hydration through feeding tubes or intravenous means.

“Dementia-Specific Advance Directive” or “DSAD” means a written document executed pursuant to this act by an individual with decisional capacity, specifying health care preferences to apply in the event the individual later enters advanced stages of dementia.

“Department” means the Department of Health.

4. a. Any competent adult diagnosed with Alzheimer’s disease or another neurodegenerative dementia shall be permitted to execute a Dementia-Specific Advance Directive.

b. The DSAD shall:

(1) be signed and dated by the declarant while having decisional capacity;

(2) be witnessed by two adults, at least one of whom is not a relative, health care provider, or entitled to any portion of the declarant’s estate or notarized;

(3) specify the individual’s wishes regarding:

(a) feeding preferences, including comfort feeding only;

(b) hospitalization, resuscitation, artificial nutrition and hydration, intravenous fluids, antibiotics, and other life-prolonging measures; and

c. The declarant shall be permitted to revoke his or her DSAD at any time while retaining decisional capacity.

¹5. a. A dementia-specific advance directive executed pursuant to section 4 of this act shall be deemed a form of instruction directive under P.L.1991, c.201 (C.26:2H-53 et seq.) and shall be subject to all rights, duties, and protections afforded therein.

b. Nothing in this act shall be construed to invalidate, replace, or supersede a previously executed advance directive unless expressly stated by the declarant.

6. a. In the event a declarant has executed multiple advance directives, including a dementia-specific advance directive, the directive most recently executed shall control unless the declarant expressly provides otherwise.

b. A dementia-specific advance directive shall govern decisions arising from a diagnosis of dementia or related neurodegenerative condition and shall not control medical decisions unrelated to such condition unless expressly stated.

c. A dementia-specific advance directive shall not preclude the consideration of other diagnosed medical conditions. Health care decisions shall be made consistent with the declarant’s expressed wishes and applicable medical standards.

d. In the event of an irreconcilable conflict between directives, the declarant’s designated health care representative shall interpret the directives consistent with the declarant’s known wishes and best interest pursuant to P.L.1991, c.201 (C.26:2H-53 et seq.).¹

¹[5.] 7.¹ a. The department shall establish and maintain a secure, electronic Dementia Advance Directive Registry to store DSADs executed pursuant to section 4 of this act.

b. Licensed health care professionals shall have real-time access to the registry for patients under their care who have executed a DSAD.

¹[6.] 8.¹ Every licensed hospital, nursing home, assisted living facility, hospice, and health care professional shall:

a. honor a valid DSAD executed under this act;

b. offer patients and families the option of comfort feeding only orders consistent with a DSAD;

c. be immune from civil and criminal liability and from discipline by the department or professional licensing boards if acting in good faith reliance on a DSAD; and

d. not be compelled to perform a treatment decision contrary to one’s conscience, provided that the timely transfer of care shall be arranged to ensure the patient’s wishes are respected.

¹[7.] 9.¹ a. The department shall develop training programs for health care professionals and long-term care staff on dementia-specific advance care planning, execution ¹,¹ and recognition of DSADs, and comfort feeding practices.

b. ¹[Every licensed hospital, nursing home, assisted living facility, and hospice shall incorporate DSAD education into patient intake and care planning processes] The training programs developed pursuant to subsection a. of this section shall constitute optional training for health care professionals and long-term care staff, for which clinicians who provide dementia care may secure continuing medical education credits¹.

¹[8.] 10.¹ The department shall collect and publish annually on its Internet website, de-identified data on the number of DSADs filed, honored, and revoked.

¹[9.] 11.¹ The Commissioner of Health shall adopt rules and regulations, in accordance with the “Administrative Procedure Act,” P.L.1968, c.410 (C.52:14B-1 et seq.), as are necessary to effectuate the provisions of this act, including rules and regulations concerning the submission, storage, and retrieval of DSADs.

¹[10.] 12.¹ This act shall take effect one year following enactment, except that the department may take anticipatory administrative action in advance thereof.