HB 152 - REGULATION OF HOSPICE CARE Number 0135 CHAIRMAN BUNDE announced the next item on the agenda as HB 152, "An Act regulating hospice care." Number 0167 REPRESENTATIVE AL VEZEY made a motion to move the committee substitute for HB 152, Lauterbach, dated March 26, 1997. Hearing no objections CSHB 152(HES) was now before the committee. Number 0203 REPRESENTATIVE JOE RYAN, Sponsor of HB 152, said CSHB 152(HES) addresses some of the problems that were voiced by people employed by volunteer hospices. Those people were afraid that the fees might be such that they couldn't comply with the regulations and they would go out of business. Commissioner Perdue indicated that the Department of Health and Social Services (DHSS) had no intention of issuing burdensome regulations and\or fees that would cause volunteer hospices any problems. He referred to page 7, line 6, Article 2, which creates a different set of licensing requirements for volunteer hospice programs. REPRESENTATIVE RYAN said CSHB 152(HES) tries to ensure a level of competence, based on national standards, so that people who are entering the hospice program, either volunteer and\or for profit, receive the kind of treatment they desire. This level of service is critical for people with a terminal illness and prevents mistreatment or abuse. The concept of hospice care is that someone has a terminal illness and receives services to end their life as peaceably as possible, surrounded by family and friends. Number 0343 REPRESENTATIVE VEZEY questioned why we want to or need to license hospices. Number 0356 REPRESENTATIVE RYAN answered that there have been instances where people have found inadequate conditions, people were not receiving the level of care for which they were paying. This bill would ensure compliance within a national standard so that people receive proper care, retain their dignity and are not taken advantage of in this situation. There are people who would abuse the system. With the increase in hospice services and the increase in the older adult population, we want to make sure there is a standard of care and treatment for these people. Number 0423 REPRESENTATIVE VEZEY asked how a hospice could take advantage of people. He assumed people could discontinue hospice services. He was aware of fraud against senior citizens, but wondered how it entered into this issue. Number 0467 REPRESENTATIVE RYAN explained that a person entering a hospice program is entering with a terminal illness, they might not necessarily be able to get up and discontinue the service. The family support might not be as available, especially in Alaska, because the person lacks an extended family. People might have some monies to pay for services and yet not receive basic services. There have been instances where a person who was incontinent was left for periods of time. This bill ensures that there is someone to provide oversight to inspect the hospice from time to time, check the records, to make sure services are provided as promised, the level of care is at the acceptable national standard and that people are not being abused. Some older people with serious terminal illnesses are not in a position to take care of themselves. Number 0646 SHELBY LARSEN, Administrator, Health Facilities Licensing and Certification, Division of Medical Assistance, Department of Health and Social Services, testified next via teleconference from an offnet site in Anchorage. It would be his agency's responsibility to develop regulations and (Indisc--paper shuffling) and to provide the oversight to the hospice organizations. His division has been trying to work with hospice organizations since they were notified about CSHB 152(HES). They believed the bill, the way it is currently written, is readable to both the certified and volunteer organizations. They do support the bill. MR. LARSEN explained that some of the problems which occurred are that certain organizations have offered hospice services, but many times they were not providing all the services which are considered essential hospice services or they were offering some services somewhat related to what a hospice organization provides. His division is expecting that HMOs (Health Maintenance Organizations) will begin entering Alaska. The HMOs and other managed care organizations are set up in a way that services are often fragmented. This bill would protect the public. Any entity which claims to provide hospice services would in fact have to adhere to certain standards. MR. LARSEN commented that this bill also provides for oversight, not currently available. In the certified facilities, Medicare requires 10 percent of the hospice organizations be evaluated each year. Currently there are three certified hospice organizations which are only being looked at once every three years. Hospice is a growing provider and there is the expectation that there will be more hospice organizations in the future. If this was to happen, the length of time between certification reviews would grow. The division sees this as a problem. Number 0862 PAULA McCARON, Hospice of Anchorage, testified next via teleconference from Anchorage. She was pleased to see that CSHB 152(HES) included the provisions requested by the volunteer hospices. Specifically, the delineation of requirements for volunteer hospices regarding administration and the assurance that licensing fees would not be assessed. In talking to some of those programs around the state, they indicated that they are much more comfortable with those new provisions. MS. McCARON commented that, basically, hospice provides volunteer and bereavement support to families after the death of a loved one, spiritual care and focus on supporting families and patients. Other health care systems only work with patients and do not provide the other services because they are not within the scope or mission of that particular health care program. There have been situations where people are being offered nursing care, while it may be high quality nursing care, it is being promoted as hospice care. People are not receiving the full range of services that entail the hospice philosophy. This was the reason for promoting legislation. When people are in a vulnerable and stressful place in their lives and are relying on the words of others and referrals by health care providers, not knowing fully what to expect, that they could be ensured that they would receive the full level of hospice services. Number 0965 CHAIRMAN BUNDE said that, typically, he imagined that hospice care was arranged by a family member. He asked if individuals checked themselves into a hospice program without family involvement. Number 0981 MS. McCARON answered that, in her Anchorage program, most often the referrals are a result of a family member. The family member has initiated a phone call and typically knows very little about the services that a hospice provides. The topic of dealing with a loved one's impending death is so emotionally charged that often people are doing all they can do to pick up the phone and make that first call. These people tend not to ask a lot of questions, in terms of making sure they receive quality services. They do express concern about the cost of care. Referrals are usually done by a family member, not the individual themselves. Number 1044 REPRESENTATIVE JOE GREEN said the definition of a hospice covers physical, emotional, theological and other areas of service. He expressed concern that if there were rigid guidelines, would it have an adverse affect on the volunteers, spiritually and emotionally. He also asked if volunteers receive training. Number 1089 REPRESENTATIVE RYAN said CSHB 152(HES) would require that a volunteer receive 18 hours of training. He felt that the people who run volunteer hospice organizations, especially the volunteer programs who adhere to the national standards, would request a volunteer to receive training on the philosophy of a hospice and what it is that a volunteer is expected to do. REPRESENTATIVE RYAN commented on the concept of hospice. Kegler Ross (Ph.) was the person who came up with the idea of death with dignity, that you shouldn't be stuck alone in a hospital bed someplace with family visiting once in awhile. He said we are just going back to what used to happen, his grandmother died at home. He explained that hospice aids the family. Number 1171 CHAIRMAN BUNDE explained that there was initial testimony from volunteer hospice organizations where people were concerned about being subjected to regulations. The committee has adopted CSHB 152(HES) which alleviates some of those concerns. Number 1246 REPRESENTATIVE VEZEY felt this was an important area. Although CSHB 152(HES) talks about protecting terminally ill people from fraud, he did not feel it was being addressed in this bill. He did not feel that CSHB 152(HES) addressed the issue of fraud as there are not any gates in which do that. He asked how fraud was perpetrated on a senior citizen or a terminally ill person. He felt that normally a family would request the service. If there isn't a family, he did not feel that a terminally ill person would typically check themselves into a hospice. He said a medical facility would go through some sort of process to transfer a person to hospice care. He asked what mechanisms would allow fraud to be perpetrated and what could the legislature do to put some side- boards up to make it difficult for fraud to occur. Number 1254 REPRESENTATIVE RYAN referred to the HMO concept on a nationwide scale. These are profit making organizations. He discussed a myriad of concerns regarding these organizations; not being able to get an appointment in a timely manner and not getting services outside the HMO. This bill is a first step to ensure that everybody plays by the same rules, the national standards for hospice care. It gives some oversight where there isn't any now. In the future, there might be some other things that need to be done. He did not try to address all the possibilities which might occur, it is just a basic framework to see that there is some oversight to ensure a standard level of hospice service. Number 1349 CONNIE J. SIPE, Director, Division of Senior Services, Department of Administration, said her division provides Medicare counseling. Medicare is a federal program which seniors qualify for by reason of their own social security eligibility. Hospice is a Medicare benefit, something that the state of Alaska does not regulate. As a condition of receiving Medicare funding in the state, the state has to agree to certify, to the federal Medicare agency, those agencies which are qualified to be paid directly by Medicare. The federal government pays directly to an agency for the benefit, known as the hospice benefit. Alaska, for years, has had certified hospice agencies, certified according to federal standards, which qualifies them for federal payment. MS. SIPE explained that the Division of Senior Services and the DHSS are very supportive of getting this licensure in place as a first step to make sure that we have some protection for the consumers of this service. If someone holds themselves out as a hospice agency, but doesn't care to receive Medicare money, then the state has no ability to say that the organization should not represent themselves as a hospice agency to consumers in their town or area. This is why licensure and federal Medicare payment certification allows certain standards. The state does the licensure and the federal government has the state complete payment certification, but the two are not the same. If the state's certification agency in the state, located in the Division of Medical Assistance, said a certain hospice entity may not receive Medicare payments because of a failure to meet the standards, then that agency could provide services for their private pay clients. The state would then not have any grounds to prevent them from representing themselves as a hospice organization. MS. SIPE suggested that it is difficult, in this time when we are not looking for more government regulation, to realize that if we are interested in providing protection for the vulnerable elderly it is important that, at the state level, we do the basic regulation of setting up licensure. This bill would have more detailed regulations. The state's intent is to have the regulations parallel the federal certification standards. Even if some person or group held themselves out to be a hospice organization and decided not to be a federally certified Medicare hospice agency, the state could enforce some basic standards. MS. SIPE said the same is true for us for home health care agencies, hospice agencies and certified nurse's aides. The state has leaned on federal certification payment standards, but the state has not had their own enforcement mechanism in place. The state can go after organizations for criminal acts, but can't regulate how they enter the business, train staff, represent themselves, whether they get bonding, or other things which seem necessary to have in place before an organization provides services or calls themselves something to the public. Licensure is a basic beginning for the state of Alaska. The high interest which was shown last year, regarding protection for the vulnerable elderly, is promoting legislation which would put in place some long overdue regulations. Alaska is one of the few states which doesn't have basic licensure in place. She referred to this bill, a certified nurse's aid bill, as well as a possible home health agency licensing bill which would provide this basic licensure. MS. SIPE explained that under federal Medicare, a doctor prescribes hospice. Whether it is the family who suggests hospice to the doctor, it is still the doctor who prescribes it under the federal social security hospice benefit. This benefit defines who is eligible, for how long a benefit period and what it covers. It is a valuable benefit under social security. The majority of people, who use hospice, receive it under this benefit. MS. SIPE said her father died 18 months ago in Florida under hospice care. Once her father was signed up for Medicare hospice care, by his doctor who certified in the normal course of his disease he would not be likely to live more than six months, the hospice agencies and their nurses became a link. Every time her mother was worried, she did not have to take her husband to the doctor. The nurse would make an extra stop and check his vital signs, check with the doctor to change his nausea medication. Medicare would have had to pay if her father had to run to the doctor every time. MS. SIPE explained that the federal Medicare benefit includes extra things such as paying for all of the prescription drugs relating to pain relief and management of disease. Normally Medicare does not pay for any prescription drugs for our senior citizens. The prescription drugs, which can be useful around death and dying, are often expensive. The other benefits include helping to pay for the hospital bed, oxygen and other equipment. Hospice is a wonderful service and citizens will be using it whether or not the state provides licensure. Senior citizens, who use this benefit under Medicare, will have some protection because of payment and certification linkage to the federal standards. Younger citizens who use hospice, under private pay or a private insurance, will not have any way to ensure those standards. Number 1655 RUPERT E. ANDREWS, Lobbyist, American Association of Retired People (AARP), said his organization is in full support of CSHB 152(HES). There was a concern that small communities would not be able to meet the original regulations, but this has been addressed in the current language of CSHB 152(HES). Number 1678 REPRESENTATIVE FRED DYSON asked about the senior citizen ombudsman in the state. Number 1691 MS. SIPE answered that there was a long term care ombudsman, but the official jurisdiction only has powers for long term care out of home care or out of home care facilities only. They can do intervention and health advocacy, but they don't have the same powers as they have with nursing homes and assisted living homes. Hospice would be an area that a long term care ombudsman is concerned about, but it wouldn't be within their strongest federal jurisdiction nor are they authorized to serve people under age 60. There are many users of hospice under age 60. Number 1720 REPRESENTATIVE DYSON asked if AARP did not believe that most of the consumers or family members, utilizing hospice care, are in the position to make inspections and ensure quality services. Number 1738 MR. ANDREWS suggested that the main concern is that there should be a standard of services. As new units and services are added, they should meet some standard for the consumer public. Number 1753 REPRESENTATIVE GREEN asked, under the current law, if he started a hospice organization would there would be any standards under which he would have to perform. He also asked if he could receive Medicare payments for the services his organization provides. Number 1781 MS. SIPE explained that if his organization found families who would privately pay him, he could do that and the state would not have the ability to set standards for him or his employees. If his organization wished to be paid by Medicare or Medicaid for some of the clients, then his organization would have to come to the state and receive certification under the federal standards. If his organization operated in that area outside Medicare and Medicaid, then the organization would not have to be licensed, they could operate on a business license. If the organization took people in, then the state could come in and say that he was operating a nursing home without a license. If he went into people's homes and provided hospice care, then the state would not have a way to protect the consumers. The consumers, at the very time that they want the service, are dealing with the imminence of death. Family members do not have the energy to go out and investigate these agencies. Number 1830 REPRESENTATIVE GREEN clarified that there is no control over what his proposed organization might charge these bereaved people. He asked if there were standards if his organization received Medicare payments. Number 1845 MS. SIPE explained that if his organization wanted to bill Medicare a rate is set for each visit, the benefit period and for certain other services. The same would also apply if he wanted to bill Medicaid, the state would set a rate. At this point, the licensure law does not contemplate setting rates for private pay clients. This would still be in the private market sector. If his organization dealt with someone who had AETNA insurance which covered hospice care, the provider would either have to agree what AETNA paid or get a deductible from the consumer. If his organization just took private pay clients, no one could say anything about what he did until a criminal fraud was committed. Number 1878 REPRESENTATIVE GREEN verified that CSHB 152(HES) would rectify this situation. Number 1883 REPRESENTATIVE VEZEY clarified that there is no evidence of any unscrupulous characters in this business right now. He has not heard anything about how fraud would be perpetrated and what the state could do to prevent it. Another concern is that we are talking about an inspection every three, four or five years. Inspections are not a very good policing force. There is some sort of policing force out there now because he has not heard anything ill about hospice programs in Alaska. Number 1922 MS. SIPE clarified that she didn't speak for the DHSS, but she would try to answer his questions. Doctors, real estate agents, nurses and other professions are licensed. There isn't always an inspection every year, but a complaint can be made about services, quality, or a possible overreach of services to medical certification licensing. This licensing agency has civil type of investigators who can look into the matter. They can use licensing laws and take disciplinary action or write a letter. It isn't just those inspections which provide the oversight. Without this licensure, a person would have to file a private lawsuit against this person or organization. MS. SIPE explained that the lucky thing about this bill is that since the federal government already pays the state for the cost of certifying these agencies and investigating complaints, it shouldn't cost the state anything more. She referred to the zero fiscal note from DHSS. It will only be an incremental amount above that, it won't require a big new project to handle this licensure. Number 1991 REPRESENTATIVE VEZEY asked how fraud was perpetrated against seniors and how it been adequately addressed in our laws. He cited the classic case where people are talked into signing over all their worldly possessions in turn for being cared for the rest of their life. Number 2011 MR. ANDREWS expressed concern that the people who are administering care to the public have a minimum amount of training, qualifying them to do whatever duties they need to do, particularly in the small, rural communities. These communities do not always have the opportunity to have registered nurses. This bill would mandate a minimum amount of training, so that no matter where a hospice unit was created, there would be that standard of care available. Hospice provides follow-up counseling and work with the survivors. Number 2049 CHAIRMAN BUNDE asked if it was fair to say that CSHB 152(HES) was a consumer protection and equal protection issue, those who don't pay for hospice currently have some consumer protection and those who do pay out of their own pocket will be provided protection. Number 2067 REPRESENTATIVE RYAN said this was a fair assessment. Number 2071 REPRESENTATIVE VEZEY made a motion to move CSHB 152(HES) out of committee with individual recommendations and attached fiscal note. Hearing no objection CSHB 152(HES) was moved from the Health, Education and Social Services Standing Committee.