Legislature(1997 - 1998)
03/20/1997 03:45 PM HES
* first hearing in first committee of referral
= bill was previously heard/scheduled
= bill was previously heard/scheduled
HB 152 - REGULATION OF HOSPICE CARE Number 0000 CHAIRMAN BUNDE announced the next item on the agenda as HB 152, "An Act regulating hospice care." REPRESENTATIVE JOE RYAN, Sponsor of HB 152, said the bill provides for licensing of hospice care programs in Alaska, ensuring that terminally ill persons receive comfort, support and care consistent with hospice philosophy and concepts through a uniform level of services. There are no federal regulations or licensing requirements for hospice programs. As of January 1997, 40 states are licensing or regulating hospice programs. Of the ten states without hospice licensing, five have laws or regulations pending. The licensing of hospice programs in Alaska will assure consumers of consistent standards in the delivery of hospice services. REPRESENTATIVE RYAN continued, hospice is a unique component of the health care delivery system, one that has evolved over the past 20 years in the United States. Hospice provides care and support for people with terminal illness. The goal of hospice care is to enable patients to live an alert, pain-free life and to manage symptoms so that the last weeks and months of life may be spent in dignity and peace. One out of every three people who die of cancer or AIDS in this country is being served by a hospice program. REPRESENTATIVE RYAN said the annual growth in hospice programs averaged about 8 percent in the early 1990s. In the last five years, growth has averaged 17 percent. Hospice services are provided through a variety of means; independent community-based organizations, divisions of hospitals or home-health services and government agencies. Rapid growth of hospice programs is due to increased demands for home care services, the trend towards reimbursement for home-care services. Consumers need to be aware of specific characteristics that differentiate hospice from other health care providers. Hospice offers comfort and care, not curative treatment. It addresses emotional, spiritual and social needs in addition to physical needs. It considers the patient and loved ones as the unit of care, affirms life and regards dying as a normal process, seeking neither to hasten nor postpone death. The care extends beyond a patient's death to include bereavement care for grieving family members. REPRESENTATIVE RYAN added that fear of painful suffering, of abandonment, and of losing control are primary concerns of people experiencing terminal illness. Hospice care is designed to address these concerns by providing support, care and needed services to help the terminally ill live their lives in maximum comfort and control. Passage of HB 152 will standardize hospice care and will guarantee the Alaskan public the opportunity to access quality hospice care. JEAN HATFIELD, Founder, Hospice in Homer, President, Board of Directors of Hospice in Homer, testified next via teleconference from Homer. She requested that the licensing requirement for the volunteer programs be deleted from the legislation. Due to limited funding and the size of the community, there is only one part-time director. Their concern is that services might be diminished if requirements are placed on the program which would further stretch the limited administrative resources. Her organization follows the National Hospice Organization guidelines, but are concerned that if the funding is reduced and administrative staff have to be cut, then the volunteer administrative staff would not be able to keep up with all the requirements. Since the major concern of hospice is that relief be provided for the family members, her organization wants to be sure they can provide services for those in need. MS. HATFIELD stated that she founded her organization because of positive personal experiences with hospice. Hospice is a wonderful program and she would hate to see a reduction in services because there was not enough funding or the agency couldn't meet just a few of the guidelines that were required. Number 0212 SHELBY LARSEN, Administrator, Health Facilities Licensing and Certification, Division of Medical Assistance, Department of Health and Social Services, testified next via teleconference from Anchorage. He referred to Senator Kelly's bill and said his office assured him that HB 152 has the same language as the senate bill. Number 0261 TROY CARLOCK, Researcher for Representative Ryan, confirmed that the committee substitute had the same language as the senate bill. MR. LARSEN understood that this bill was being presented to preserve the hospice philosophy and to ensure quality care. It is written in a way which would meet those needs. There is no objection to this bill from the department. Number 0350 CHARLES QUARRE, President, Hospice in Central Peninsula, testified next via teleconference from Kenai. His organization has been in operation for the last ten years, has nine members and 50 volunteers who take 16 hours of training. The majority of their clients are people who cannot afford free standing hospice. His organization also provides a free loan closet which has beds, wheelchairs and other things which can be needed in a hospital room. Referrals are given from doctors, hospitals and family members. They are a member and adhere to the guidelines of the National Hospice Organization. Their organization is highly esteemed in the local area and directed the committee to speak with Representatives Davis and Hodgins to confirm this statement. Grants have been given from the Rasmussen Foundation, UNOCAL and ARCO, a main supporter is the United Way where they are required to present their operations on a yearly basis. MR. QUARRE said they have a part-time paid director, the rest of the work is done by volunteers. His organization conforms to all the requirements in Article 2. However it would place an additional burden on them in terms of time and resources. The proponents in this bill claim that they are not interested in hindering the efforts of the volunteer organizations or volunteer hospices and questioned why there was a law in this proposal. This law would require additional paperwork which might take away from efforts to take care of their clients. "We also question (Indisc.) it may be they're not our laws or regulations a way in effect that would preclude any, any, any, a problems with good hospices that are in effect now." They requested that hospice providers like his organization be deleted from this bill. Number 0536 CAROLYN SMITH, Home Health Care Coordinator, Bristol Bay Area Health Corporation, testified next via teleconference from Dillingham. She spoke in favor of HB 152 because, as a community, they are trying to put together a hospice. The guidelines listed in the bill will help a lot in the planning process such as creating training guidelines. Her organization is not sure whether or not they will become a direct service provider or a volunteer group, but she liked the guidelines that were set out. Number 0584 TINA KOCSIS, Director, Hospice in Tanana Valley, testified next via teleconference from Fairbanks. Her organization is a volunteer hospice which served 16 terminally ill patients and over 700 bereavement clients last year. All of the proposed regulations in HB 152 are already being adhered to in her organization. In theory, hospice is in favor of this type of criteria. The problem, that many of the board members see with HB 152, is that a small hospice has a limited budget, they don't get any enumeration for any services and so fund-raising and limited time is a big factor. The board is concerned that any kind of regulation, although it might help with quality control and protecting consumers, might also create hardships. They would urge, at the very least, that the licensing process be kept simple, inexpensive and would take into consideration the volunteer status. If these things can't be done, her organization would have serious concerns about including volunteer hospices in this bill. Volunteer hospices and certified hospices are quite different from each other. Number 0709 BARBARA RICH, Board Member, Hospice in Tanana Valley, testified next via teleconference from Fairbanks. She stated that she was speaking for herself and not as a board member. She would like to see HB 152 passed because she felt it was something that was necessary. Currently her hospice program performs all the issues that the bill addresses, in fact the requirements they have are more strict and require more hours of training in addition to everything else. Some members of the board were hesitant to support HB 152 for fear that it will be expensive and hard for the hospice to pay for the license as well as maintaining the records for the regulation. The organization might have to hire someone just to do this. She hoped the legislature would instruct the Department of Health and Social Services to make the reports for volunteer hospices simple to produce in order to alleviate this problem. MS. RICH feared that her hospice had clients who were very vulnerable. Her hospice deals with clients who are ill and families who are under a lot of stress. It is an area which can be easily exploited. She would like to see that someone doesn't take patients into their home and call it a hospice, which they can now. It hasn't happened, but it certainly could. Number 0789 KAREN LAIRD, Board Member, Hospice in Tanana Valley, testified next via teleconference from Fairbanks. She stated her support for HB 152 for the reasons given by Ms. Rich. PAULA McCARRON, Hospice of Anchorage, testified next via teleconference from Anchorage. Until recently the hospice where she works operated in a similar fashion to a volunteer hospice so she shares some of the concerns expressed. She shared comments from a network of hospices across the country which addressed the concerns from the Commonwealth of Virginia who enacted hospice licensure in 1989. This licensure limited the definition of hospice so greatly that it prohibited a volunteer hospice organization to operate in Virginia. Now Virginia is trying to go backwards, to try and find a way to get a mechanism that legitimizes the work which a volunteer hospice performs. She hoped that volunteer hospices could see this bill as a protection, so there is a standardization of services for consumers and a way for the state of Alaska to insure that there is compassion and care for people being sent home who do not have adequate support services in their communities. Number 0900 PATRICIA SENNER, Registered Nurse, Executive Director, Alaska Nurses Association, testified next via teleconference from Anchorage. Her organization voiced their support for this bill, the committee substitute. They feel it is important to regulate both those hospices who receive prior reimbursements and those that are volunteer so there is consumer protection. Her organization is happy with the emphasis placed in the bill and the role played by registered nurses. She said she would fax any further comments to the committee. Number 0939 MIKE SHIFFER, Board Member, Hospice of Anchorage, testified next via teleconference from Anchorage. He was one of the people who first approached Senator Kelly about proposing this legislation. He was in full support of HB 152 and hoped that the amendments that have been added, as the bill works its way through the system, will support the volunteer hospices as well. Number 0966 RITCHIE SONNER, Executive Director, Hospice and Home Care of Juneau, said she was in support of HB 152. Although she recognized and understood the concerns that were voiced by the other voluntary hospices, she did not agree with them. She felt these standards were minimum, clean, straightforward and the very least that we can expect of anybody that calls themselves a hospice in the state of Alaska. This bill would protect the consumers and the people who would wish to utilize the services.