|BILL AS INTRODUCED||2007-2008|
Introduced by Representatives Milkey of Brattleboro, Botzow of Pownal, Frank of Underhill, Haas of Rochester, Nuovo of Middlebury and Zuckerman of Burlington
Subject: Health; palliative care; hospices
Statement of purpose: This bill proposes to create the office of the state palliative care ombudsman; to require the health care reform commission to conduct a study on the availability of insurance coverage for children’s palliative care and expanding such availability, including exploring the feasibility of a pediatric hospice care waiver; and to direct the Hospice and Palliative Care Council of Vermont to implement a consumer outreach and education initiative on patients’ rights and options in choosing end-of-life care.
AN ACT RELATING TO HOSPICE CARE AND PAIN MANAGEMENT
It is hereby enacted by the General Assembly of the State of Vermont:
Sec. 1. 33 V.S.A. chapter 76 is added to read:
CHAPTER 76. PALLIATIVE CARE OMBUDSMAN
§ 7601. DEFINITIONS
For purposes of this chapter:
(1) “Home for the terminally ill” shall have the same meaning as in section 7101 of this title.
(2) “Hospice care” means end-of-life care provided by health care professionals and volunteers who give medical, psychological, social, and spiritual support in a variety of settings. The goal of hospice care is to help people who are dying to live their remaining days in peace, comfort, and dignity, and to support families during the patient’s life and with bereavement.
(3) “Office” means the office of the state palliative care ombudsman.
(4) “Ombudsman” means an individual who intervenes on behalf of a private individual to resolve complaints and, in this chapter, refers to any person designated by the state ombudsman as part of the office of the state palliative care ombudsman.
(5) “Palliative care” means patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. It addresses physical, intellectual, emotional, social and spiritual needs while facilitating patient autonomy, access to information, and choice of care.
(6) “Terminal illness” means a medical disease or condition in which a patient so diagnosed has a life expectancy of less than six months.
§ 7602. OFFICE OF THE PALLIATIVE CARE OMBUDSMAN
The department of disabilities, aging, and independent living shall establish the office of the palliative care ombudsman by contract with any nonprofit organization. The office shall be administered by the palliative care ombudsman, who shall be an individual with expertise and experience in the fields of palliative care, hospice care, and advocacy. The office shall represent the interests of persons who are suffering from terminal illness or chronic pain, as documented by a physician; receiving hospice care; or residing in a home for the terminally ill, regardless of age, in accordance with the provisions of this chapter.
§ 7603. RESPONSIBILITIES OF THE OFFICE
The office shall:
(1) Investigate and resolve complaints on behalf of individuals receiving palliative care, hospice care, or both.
(2) Analyze and monitor the development and implementation of federal, state, and local laws and of rules, regulations, and policies relating to palliative care, hospice care, or homes for the terminally ill, and recommend such changes as it deems appropriate.
(3) Provide information to the public, agencies, legislators, and others, as it deems necessary, regarding problems and concerns of individuals receiving palliative care, hospice care, or both, including recommendations related to such problems and concerns.
(4) Develop and establish policies and procedures for involvement by volunteers in the work of the office.
(5) Promote development of citizen and consumer organizations in the work of the office and the quality of life of individuals receiving palliative care, hospice care, or both.
(6) Establish by rule procedures for protecting the confidentiality of its clients.
(7) Establish by rule qualifications and training for ombudsmen, monitor their performance, and establish by rule procedures for certifying staff and volunteer ombudsmen.
(8) Train persons and organizations in advocating for the interests of individuals receiving palliative care, hospice care, or both.
(9) Develop and implement a uniform reporting system to collect and analyze information relating to complaints by individuals receiving palliative care, hospice care, or both, and conditions in homes for the terminally ill.
(10) Submit to the general assembly and the governor on or before January 15 of each year a report on complaints by individuals receiving palliative care, hospice care, or both; conditions in homes for the terminally ill; and the quality of palliative care and hospice care, and recommendations to address identified problems.
(11) Perform such other activities as the office deems necessary on behalf of individuals receiving palliative care, hospice care, or both.
§ 7604. AUTHORITY OF THE STATE PALLIATIVE CARE
In fulfilling the responsibilities of the office, the state palliative care ombudsman may:
(1) Hire or contract with persons or organizations to fulfill the purposes of this chapter.
(2) Communicate and visit with any individual receiving palliative care, hospice care, or both, provided that the ombudsman shall obtain permission from the individual or the individual’s guardian or legal representative to enter the individual’s home. Homes for the terminally ill shall provide the state ombudsman access to their facilities, and palliative care and hospice care providers shall ensure the state ombudsman access to individuals for whom they provide care.
(3) Have appropriate access to review the medical records of an individual receiving palliative care, hospice care, or both, subject to the provisions of the Health Insurance Portability and Accountability Act of 1996, codified at 42 U.S.C. § 1320d and 45 C.F.R. §§ 160–164.
(4) Pursue administrative, judicial, or other remedies on behalf of individuals receiving palliative care, hospice care, or both, including access orders from a district or superior court judge when access under subdivision (2) or (3) of this section has been unreasonably denied, and all other reasonable attempts to gain access have been unsuccessful.
(5) Delegate to ombudsmen any part of the state ombudsman’s authority.
(6) Adopt rules necessary to carry out the provisions of this chapter.
(7) Take such further actions as are necessary in order to fulfill the purposes of this chapter.
Sec. 2. PEDIATRIC HOSPICE CARE
(a) The health care reform commission shall conduct a study to determine the current availability of insurance coverage for pediatric palliative care services and avenues for increasing children’s access to care. In conducting the study, the commission shall:
(1) determine the extent to which, under publicly and privately funded health insurance, children in this state who are diagnosed with a life‑threatening medical condition are currently able to receive appropriate and timely palliative care services related to the symptoms of the condition, the side‑effects from treatment, and the psychological, social, and spiritual problems resulting from the condition or treatment;
(2) explore the feasibility of obtaining a Section 1115 waiver from the federal Centers for Medicare and Medicaid Services to provide pediatric hospice care for children covered under the state’s Dr. Dynasaur program;
(3) analyze the impact in states that have adopted the Children’s Hospice International Program for All-Inclusive Care for Children and their Families (CHI PACC) or other palliative care demonstration projects, including whether a CHI PACC program results in reallocation of resources for more effective care within the parameters of overall budgetary neutrality;
(4) consult with the Vermont department of health; the department of banking, insurance, securities, and health care administration; the office of Vermont health access; the Hospice and Palliative Care Council of Vermont; organizations representing health care providers; the director of the department of clinical ethics at a tertiary care hospital located in this state; and such other persons as the commission deems appropriate in connection with the study; and
(5) develop such recommendations as the commission deems appropriate and feasible, including a potential CHI PACC or other demonstration project in this state, to advance the goal of improving health care services for children with life-threatening medical conditions.
(b) On or before November 1, 2008, the commission shall report to the senate committee on health and welfare, the house committees on health care and on human services, and the health access oversight committee on the results of the study.
Sec. 3. APPROPRIATION; OUTREACH AND EDUCATION INITIATIVE
(a) There is appropriated to the Hospice and Palliative Care Council of Vermont from the general fund in fiscal year 2009 the amount of $200,000.00 to conduct a statewide consumer outreach and education initiative on patient rights and options in choosing end-of-life care.
(b) In conducting its outreach and education efforts, the Hospice and Palliative Care Council of Vermont shall:
(1) endeavor to change the culture in the state around death and dying;
(2) be a leader in identifying and providing information and resources relating to end-of-life issues;
(3) develop creative venues for dialogue about how individuals and families face life-threatening illness; and
(4) encourage individuals and families to advocate for their own care and the care of their loved ones.
The Vermont General Assembly
115 State Street