Public Health Committee

JOINT FAVORABLE REPORT

SPONSORS OF BILL:

Public Health Committee

REASONS FOR BILL:

To require the Department of Public Health to adopt regulations concerning facilities offering hospice care in order to expand access to hospice care in local communities

RESPONSE FROM ADMINISTRATION/AGENCY:

Representative Daniel J. Fox: Rosenthal Hospice opened in 2000 in Stamford. It offered great care to a personal family member, Aunt Berdie. In 2011 after regulations governing hospices were revised, Rosenthal fell under the nursing home licensure and regulations. It proves difficult for a 12-bed hospice facility, like Rosenthal, to fulfill the standards set for nursing homes. Our family members, our friends, our neighbors, and our constituents should have access to facilities whose primary purpose is hospice care within or in close proximity to the communities that they call home.

I also support the proposed revisions to section (a) beginning at line 6 in this legislation, which are as follows:

“Shall be authorized to operate a hospice facility, including a hospice residence, for the purpose of providing hospice services for terminally ill patients who are in need of hospice home care or hospice inpatient services. The hospice facility, including a hospice residence, must be able to provide the following levels of hospice care: routine, general inpatient, continuous, or respite”.

Senator Eileen M. Daily: Our state has pioneered hospice care in this country. Almost forty years of experience has provided our medical community with a clear understanding of staffing needs, pharmaceuticals requirements and physician services. This legislation ignores best practices and clinical experience with thousands of hospice patients by proposing to mirror the minimum health and safety requirements established by Medicare. We should not continue down the path of devaluing hospice care.

The citizens of our state now enjoy the highest quality inpatient hospice care in both single and double bed settings, delivered in 20 of the state's 31 hospitals and by Connecticut Hospice in Branford. In addition, over 200 of our nursing homes in Connecticut have separate hospice beds for patients not requiring rigorous care. Let's not go back to a time when our sick and dying failed to receive immediate attention to their medical and emotional needs and the full support of a dedicated team of hospice physicians, nurses, social service directors, and volunteers.

Representative Janice Giegler: Current regulations only allow access to hospital-based hospice care. With these new regulations, terminally ill patients will have access to all levels of hospice services both in hospitals as well as within their own communities. It will also allow for small hospice residences to be built within towns across the state where accessibility to care is difficult to obtain. In Danbury, where access to care is particularly a problem, CT Association of Home Care and Hospice is willing and ready to break ground on a community facility. It will offer care close to home which will benefit not only the economy in Danbury but also improve the quality patient care and family satisfaction.

I would also like to propose revisions to section (a) beginning at line 6 in this legislation, which are as follows:

“Shall be authorized to operate a hospice facility, including a hospice residence, for the purpose of providing hospice services for terminally ill patients who are in need of hospice home care or hospice inpatient services. The hospice facility, including a hospice residence, must be able to provide the following levels of hospice care: routine, general inpatient, continuous, or respite”.

Representative Lonnie Reed: Increased access to high quality hospice care in Connecticut is a goal I share. We should encourage the creation of all kinds of hospices to serve our Connecticut communities—small, six bed facilities; hospital rooms and units dedicated to hospice care; and where possible, hospice hospitals, such as our own Connecticut Hospice in Branford.

However, I fear that H.B. 5499 will invite into our state a for-profit hospice industry that includes parent companies now under investigation by the U.S. Justice Department for unlawfully pocketing Medicare dollars without delivering high quality hospice services. And also for systematically recruiting non-hospice patients from nursing homes who are then warehoused long term in understaffed for-profit hospice facilities and deprived of the medications, activities and care they truly need. We need to protect and to encourage the kind of high quality hospice care our state pioneered forty years ago by opening the very first hospice in the United States.

Representative Michael L. Molgano: Families of loved ones are not always able to provide aid and services during end of life and hospice affords them a peaceful and comforting palace where they can spend quality and meaningful time as family. It is correct and necessary to create regulations for hospice home care services to operate as a residence versus a nursing home facility. Nursing homes do not provide the same home away from home atmosphere a hospice residence offers.

Every person deserves to live his or her last days at home and circumstances may prevent this. Having a near-by hospice residence that provides an atmosphere that emulates home will allow a person's time of passing to be a private and personal one and the family to spend these last moments with their loved ones in peace and dignity.

Senator Michael McLachlan: This legislation allows hospice agencies throughout Connecticut the opportunity to build their own hospices residences. The Regional Hospice in Western Connecticut, in the district which I represent, has seen an 8.5 percent increase in the average daily census of their hospice program, showing that there is a growing need for this type of care. Currently, regulations provide for hospital-based hospice only.

Opening up the access allows for convenience for patients and their families, especially in areas where the large hospital-based hospice is scarce. In addition, the type of care one receives in a smaller facility is more intimate, which leads to a higher patient and family satisfaction rate. Small facilities also help decrease costs. As the life of our resident's come to an end, we should provide them and their families with an environment that is comfortable and affordable.

Representative Vincent Candelora: Connecticut's in-patient hospice care regulations require rigorous standards, including on-site medical professionals and pharmaceutical and religious services. The new proposed regulations would repeal some of these requirements and reduce patient/medical staff ratios.

Connecticut's existing regulations assure our loved ones receive the best care at their most vulnerable point in their lives. If the new regulations pass, we risk replacing our nationally acclaimed hospice standards with Medicare minimum standards that will invite fraud and allow the for-profit industry to take advantage of our most vulnerable and terminally-ill patients.

Representative Patricia Widlitz: Almost forty years of experience have helped establish rigorous standards for Connecticut's hospice care regulations. Connecticut citizens have high-quality inpatient hospice care in two-thirds of the state's hospitals as well as Connecticut Hospice in Branford. Connecticut Hospice set the model for care and continues to set high standards for full-service hospice.

To reduce our standards to the minimum federal guidelines would be a giant step backwards in patient care. These patients are our parents, our brothers and sisters, our children and our friends. Any dilution of our standards would be an injustice to our current and future hospice patients.

Anthony DaRos, First Selectman, Branford: Connecticut should remain the leader in providing excellent hospice care to patients and their families. As a Board member of Connecticut Hospice and as a family member of a hospice patient, I know it is unreasonable to enact legislation that is suppose to help hospice patients by reducing the number of nurses, doctors, and other caregivers. Patients have access to inpatient hospice services in the state in hospitals and nursing homes. This legislation will not give better access to proper care.

Reducing the level of care that is provided in hospice creates an environment ripe for abuse. For-profit hospice providers who receive benefit payments from the government and insurers are incentivized to provide only the minimum mandated services to cut cost and increase profits. We should keep those questionable practices and investigations out of Connecticut by maintaining the high standards that are the hallmark of hospice regulations in the state.

Michael A. Pavia, Mayor, Stamford: The Richard Rosenthal Residence, a 12-bed hospice facility in Stamford, recently closed after serving the community for 11 years. It closed, not because of lack of support or need, but due to the complex regulations which are not appropriate for such a facility. Current regulations have reached a level of complexity never envisioned by those who initiated hospice care more than 30 years ago. They reflect an antiquated, medical and long term care model which multiple surveys have indicated is not what people want at the end of life.

We currently have an opportunity to create a new hospice in Stamford through the generosity of a group of Fairfield County residents. We are asking for relief from the need to recreate a medical model that is not only cost prohibitive, but also is not what any person seeking hospice care would expect. Connecticut has only one operating hospice facility, located in Branford. Every Connecticut resident deserves access to end-of-life care options close to home.

NATURE AND SOURCES OF SUPPORT:

Tina Eldridge, RN, Hospice Southeastern CT: The proposed regulations would provide the following benefits:

These benefits would address the following concerns:

Theresa Bachhuber, R.N., Administrator for the VITAS Innovative Hospice Care: The proposed legislation provides access to the full delivery of quality hospice care services. It provides the flexibility that will foster models of inpatient hospice care that best suits the needs of communities throughout the state. Absent adoption, hospices remain very limited in how they meet that need. Currently, the only way a hospice program can effectively develop an inpatient hospice program is either to build a hospital-like facility or pursue a daunting regulatory process which is expensive and uncertain. In our quest to meet inpatient needs in Waterbury, VITAS conformed to the existing regulatory structure; that approach was time consuming, expensive, and enormously cumbersome.

The first of its kind in Greater Waterbury, this 12 bed inpatient hospice unit provides a tranquil, home-like atmosphere for patients and their families. It has been a tremendous success to patients and families in Greater Waterbury. Since the nearest inpatient hospice facility is more than 50 miles away, this 12 bed unit is meeting the growing healthcare needs of its community. VITAS has been providing hospice services in Connecticut since 2004 and operates two Medicare certified hospice programs in Connecticut. While most patients and families receive hospice care at home, the option of an inpatient hospice unit is an important one that is necessary when symptoms such as pain, respiratory distress, anxiety and others are too challenging to manage at home. Hospice should provide quality care patients and families deserve in the location they desire.

Dianne Welch, Director of Hospice at Visiting Nurse & Health Services of CT: Currently, the majority of hospice patients in Connecticut have access to the inpatient level of care that is contracted through either a nursing facility, acute care hospital or the local hospice agency. Although the hospice is responsible for the plan of care for these patients, the actual 24-hour care is provided by the hospital or the skilled nursing staff that has some education but may not be of the hospice philosophy. In the contracted setting, the hospice agency may not have control over the environment to create the atmosphere that they desire for patients and families. Often, staff members are also caring for non-hospice patients and find it hard to do both effectively. Each hospice agency should have the option to create and operate an inpatient facility where our patients can have access to a true hospice experience.

We believe that patients and families of Connecticut have a right to receive this standard of hospice care in the communities they reside. The proposed revisions will also help modernize hospice care and services in the state of Connecticut. They will comply with both the Connecticut home health agency regulations and with the Medicare Conditions of Participation (CoPs). Therefore, compliance with all these state and federal regulations will ensure appropriate, safe care for hospice patients.

Cynthia Squitieri, MS, LCSW, CHCM, CHA; President and CEO, Regional Hospice and Home Care of Western CT: Regional Hospice and Home Care of Western CT is located in Danbury and provides hospice and palliative care to patients in Western CT. For the past 29 years, we have served thousands of patients, including young children, teenagers, and adults during end-of-life. Families want to remain in their own communities and have access to a residence with private rooms to live out their remaining days. It is not appropriate to have a 14-year old who cannot die at home because there are other young siblings in the home, die next to a patient in a nursing home who had a hip replacement. This alternative to hospice residence is inhumane.

As a board member of the Connecticut Association of Home Care and Hospice (CAHCH) and along with 28 of the 29 licensed hospice providers in Connecticut we have been working with the Department of Public Health (DPH) to develop revisions to current statutes based on the current Medicare Hospice Conditions of Participation and provide opportunities for all licensed hospice providers in the state to offer terminally ill patients greater access to hospice service and care.

Regional Hospice and Home Care of Western CT has already completed a feasibility study and has plans drawn to build a 35,000 square foot, twelve, private bed hospice residence in southern Danbury which also encompasses our 3,000 square foot bereavement center for the community. We need this facility. Travelling over an hour and a half to CT Hospice in Branford is unacceptable.

Melanie Cama, BSN, RN, CHPN; Director, Middlesex Hospital Homecare: Middlesex Hospital has a short term inpatient facility that has been caring for palliative and hospice patients for 20 years. Our agency represents over 600 of these patients and their families. Passage of these hospice facility regulations would open access to more patients and families to receive hospice services in the appropriate setting and closer to home with skilled clinicians who can provide safe, dignified and compassionate care at the end of life.

These new regulations would also ease the strain on families who are faced with care location decisions when homecare is not feasible for their loved one. Patients facing this most stressful time in their lives should have access to facilities that are in their communities, close to their families, while having true hospice care. This is available in homecare settings and skilled nursing facilities, but for some patients an inpatient setting with 24-hour hospice care is necessary. All Connecticut residents should have this opportunity.

Carol Emmerthal, R.N., Director, Hospice and Palliative Care of Northeastern Connecticut: There are significant inequities in access to hospice facilities. Presently, Connecticut Hospice is able to provide a full spectrum of inpatient and outpatient care in the Branford area. The same access is not available in eastern and northeastern Connecticut. Access to this care is nearly impossible for our residents. Branford is 2 hours away. The four hour round trip severely impacts their ability to work and provide the care to maintain their families. Family and friends of those dying should not have to make these difficult choices.

Our program had to transfer patients to hospice facilities in Massachusetts and Rhode Island. Although closer, they are out of state and remain a distance from our community. This transfer also poses issues with some insurance carriers who may not have agreements with out of state organizations. Out of state transfer is not an option for our Medicaid patients.

The new regulations expand the ability for all hospices programs in Connecticut to provide care in their communities without altering the structure that is established at Connecticut Hospice.

Mag Morelli, President, LeadingAge CT: LeadingAge Connecticut maintains a vision in which every community offers an integrated and coordinated continuum of high quality and affordable long term healthcare, housing, and community based services. It is our hope that the proposed legislation encourages the development of new inpatient hospice facilities, residents or units established through partnerships, integrations or new initiatives so as to provide health care consumers throughout the state with increased access to quality end of life care options.

The state is currently embarking on a right sizing strategic plan for our long term care system. In line with that initiative, LeadingAge Connecticut encourages long term care providers to develop business plans to restructure and/or diversify existing facilities and services. The common goal is to reshape the long term care system to meet current consumer demands and market needs. The opportunity to provide high quality, facility-based end of life care to meet the needs of the community should be available as an option for existing long term care providers to consider in such planning. It is imperative to adopt new hospice facility regulations while the state is investing in a long term care right sizing initiative and long term care providers are strategically planning for the future of aging services.

The following individual offered similar testimony in support of the legislation:

The following individuals expressed their support and suggested the following revisions to section (a) after “pursuant to 42 USC 1395x” (line 6):

“Shall be authorized to operate a hospice facility, including a hospice residence, for the purpose of providing hospice services for terminally ill patients who are in need of hospice home care or hospice inpatient services. The hospice facility, including a hospice residence, must be able to provide the following levels of hospice care: routine, general inpatient, continuous, or respite”:

The following employees, volunteers, friends, and family offered personal testimony regarding their experience with hospice care:

NATURE AND SOURCES OF OPPOSITION:

Anne Nugent, Director of Inpatient Nursing, Connecticut Hospice: Connecticut Hospice was the first freestanding hospice in the U.S., and as such it adhered to regulations that were specific and whose aim was the comfort and safety of patients served. The landmark legislation, 19:13d4b, set the bar very high for care and provision. Patients under this regulation would be entitled to rigorous staffing requirements: 1 registered nurse to 6 patients and the provision of virtually every service that might be needed by a patient who is facing the most difficult time in their life. To do less would only diminish the inherent dignity that each and every patient and family deserves.

With the passage of this legislation, there is a potential to diminish the quality and quantity of services provided to a very vulnerable population. The new regulations describe sufficient staffing, sufficient access to services with a sufficient time. We don't feel the word “sufficient” has any place in our organization. We at Connecticut Hospice continually strive to provide excellence in clinical practice and continually challenge ourselves to enhance the skills of our health care professionals to ensure that state of the art treatment of hospice and palliative care patients will always be the norm and not the exception. The patients we serve require immediate crisis intervention with no margin for error.

The goal of the proposed legislation appears to be noble: enhanced areas of coverage and increased accessibility of hospice care. However, at what cost? Connecticut Hospice already serves most of the state with our homecare and inpatient services while maintaining the highest level of care. We should not create two levels of hospice care. Connecticut Hospice should not be forced to change its level of care by competition satisfied to provide “sufficiency” versus excellence.

Diane Grenier, RN, AD, Connecticut Hospice: The proposed legislation will negatively impact patients. They allow for decreased staffing, especially nursing, pharmacy, medicine and social work support. The proposal appears to be a combination of homecare and inpatient units to make a quasi-nursing model in the name of an inpatient facility. Currently, inpatient hospice services provide intense nursing care to our most ill clients that cannot stay at home. There are times that symptoms, safety, and caregiver need lead to the decision to bring a person to an inpatient care setting.

The decision for placement in an inpatient program is often due to the complexity of managing symptoms at the end of life. A person can experience a multitude of symptoms such as respiratory distress, intractable pain, terminal restlessness, fear, and skin and tumor problems. When these symptoms occur, the person needs more intense medical services. The removal of onsite pharmacy services which provides an integral part of quick symptom management is a means to cut cost at the detriment of the patient. The proposed legislation for hospice houses does not take this into consideration.

The Connecticut Hospice inpatient services currently has a nurse to patient ration of 1 to 4 on day shifts, 1 to 6 on evening shifts, and 1 to 7 on night shifts with an addition of CNA services. Nursing assistants are limited in handling of medications in the home and it is completely inappropriate for a hospice setting. Nursing assistants are credentialed by the Department of Public Health; their training does not include nursing assessment, making judgments on which medication may manage symptoms, and taking action when those symptoms are not well managed. Many end of life medications are given by the IV route for management of symptoms. These medications require skilled nurses to assess the patient and adjust medications. The new guidelines are against nursing standards of care and endanger the safety of the patient.

James Prota, RPh, Director of Pharmacy, Connecticut Hospice: As the Director of Pharmacy, I am specifically opposed to the making of on-site pharmacy services optional for hospices that provide direct patient care. The Medicare Conditions of Participation state that staffing must reflect the volume of patients, their acuity and the level of intensity of services needed to ensure that the plan of care outcomes are achieved. At Connecticut Hospice, we follow the trail of medication from start to finish. Medication reconciliation is an area where health systems struggle to comply. The accurate transfer of medication orders from one institution to another is a difficult task. It is much more difficult and unsafe without pharmacy services available on site.

Also, the input of the interdisciplinary team experienced in pain management and in all aspects of palliative care and end of life symptom management cannot be overstated. Removing on-site pharmacy services from the hospice regulations and enacting this bill will be a setback for the profession of pharmacy and clinical pharmacy practice, a setback for a patient's safety at the end of life.

Joe Andrews, Medical Director, Connecticut Hospice: The proposed legislation permits unacceptable dilution of patient care standards. The current regulations should not be replaced with imprecise specifications consistent only with Medicaid standards, which are far poorer and weaker in patient protection than the Connecticut standards.

Connecticut Hospice will continue to offer proven staff rations and members of our entire care team present on a daily basis. The Joint Commission clearly endorses our methods and we won't compromise. Now is not the time to change our state's standards, when many for-profits are being investigated for Medicare fraud. These practices may come to our state. You cannot call a service “hospice” without a large veteran interdisciplinary team to make the service a hospice.

Katherine Blossom, Arts Director, Connecticut Hospice: The proposed bill does not require arts services in an inpatient hospice setting. Art services have been mandated in free-standing inpatient hospice setting since 1979 in Connecticut. This is because arts interventions have a wide range of physical, spiritual, and emotional benefits.

Our arts program offers music, music therapy, visual arts, art therapy, crafts, literary arts, life review, dance/movement therapy, and concerts/exhibits from community artists. We facilitate expression and thereby afford dignity to the dying and their facilities, and we complement medical and other interventions by providing interventions which ease physical symptoms and nurture the spirit, using a variety of media. The proposed bill strips integral services leaving a bare-bones, diluted version.

Ralph Papp, LCSW, Director of Social Work, Connecticut Hospice: Most of the patients and families receiving care at Connecticut Hospice's acute care hospice hospital are in a state of crisis during this delicate end-of-life process. Patients and families decompensate in the face of crisis. Thus the social worker needs to be engaged in comprehensive assessment, supportive counseling, crisis intervention, education, and connection to community resources to ameliorate this crisis.

At CT Hospice, everyone is assessed on admission in order to circumvent a crisis and provide the family with stronger coping mechanisms. This level of acute support and responsiveness to a crisis does not seem possible under the proposed legislation, which seems to standardize diluted levels of interdisciplinary team availability.

Reverend Charles Woody: Like other professional practitioners such as a pharmacist who is licensed, you need to have spiritual people who have formal pastoral education. These spiritual practitioners need more than an interest in faith, they need formal education.

Clinical pastoral education provides the foundation to work with the patient and their family. The new regulations state that you only need to be a counselor to be called on for support. In the old regulations, you have to be ordained and have five years of clinical experience. Patients and families at the end of life deserve better spiritual intervention than the new regulations require.

The following employees, volunteers, friends, and family of Connecticut Hospice offered personal testimony regarding their experience with hospice care: