End of Life Quality Care Act Concept

State of ___________


(Bill #)

(Year) Regular Sessions





Introduced by Senator/Assembly(wo)man — read twice and ordered printed, and when printed to be committed to the Committee on Health.


AN ACT, hereafter known as the “End of Life Quality Care Act,” to amend the Public Health Law in relation to providing safe and appropriate levels of staffing and wages of staff in home and community based care programs as well as care facilities serving elderly persons and persons with life-threatening, chronic illness; expanding instruction in palliative care at medical schools and other institutions providing health care instruction; and ensuring access to palliative care for patients.




As used in the End of Life Quality Care Act,


“Palliative Care” means interdisciplinary team-based care for persons with serious illness or injury, frailty of age, or a combination of medical conditions that are life-threatening, which addresses physical, emotional, social and spiritual needs and seeks to improve such conditions for the person and his or her family.  Palliative care teams alleviate pain and other distressing symptoms, regard dying as a normal process, do not intentionally hasten, assist in or cause hastened death, nor intentionally prolong the dying process, integrate the psychological and spiritual aspects of patient care, and may positively influence the course of illness.  Palliative care teams are generally comprised of one or more physicians, nurses, social workers and chaplains, and may include other therapeutic disciplines like physical and occupational therapy and counseling, all depending on the needs and preferences of the individual, as well as the size and need of the facility or outpatient care provider.


“Living Wage” means the wage needed to cover basic family expenses (basic needs budget) plus all relevant taxes, which differs according to the number of wage-earners and dependents in a given household.  The living wage calculation does not include publicly provided income or housing assistance. Values are reported in 2014 dollars. To convert values from annual to hourly, a work-year of 2,080 hours (52, 40 hour work weeks) is assumed. The basic needs budget is calculated as follows:

Basic needs budget = Food cost + child care cost + (insurance premiums + health care costs) + housing cost + transportation cost + other necessities cost

The tax values are applied to the basic needs budget to calculate a living wage as follows:

Living wage = Basic needs budget + (basic needs budget * (taxes))

This can be determined by MIT’s Living Wage Calculator, found here:  http://livingwage.mit.edu/, or similar, which has the following data sources:

Food.ii The food component of the basic needs budget was compiled using the USDA’s low-cost food plan.iii The low-cost plan assumes that families select lower cost foods and that all meals (including snacks) are prepared in the home.

Child Care.iv The child care component is constructed from a 2013 report published by the National Association of Child Care Resource and Referral Agencies (NACCRRA). This report provides state-level child care cost estimates for 2012.v We assume that low-income families will select the lowest cost child care option available; therefore we used the lowest cost option (family child care or child care center). Values were inflated to 2014 dollars using the Consumer Price Index inflation multiplier from the Bureau of Labor Statistics.vi

Health. Typical health-related expenses are difficult to estimate due to the multitude of variables that potentially impact health care expenditures, such as the relative health of household members and the range of coverage and affiliated costs under alternative medical plans. The health component of the basic needs budget includes: (1) health insurance costs for employer sponsored plans, (3) medical services, (3) drugs, and (4) medical supplies.vii Values were inflated to 2014 dollars using the Consumer Price Index inflation multiplier from the Bureau of Labor Statistics.viii

Housing.ix The housing component captures the likely cost of rental housing in a given area in 2014 using HUD Fair Market Rents (FMR) estimates. The FMR estimates are produced at the sub-county and county levels.x County FMRs were obtained by aggregating sub-county estimates (where sub-county estimates existed) using a population-weighted average. State and metropolitan area FMRs were also obtained by aggregating county FMRs using a population weighted average.

Transportation.xi The transportation component is constructed using 2012 data by household size from the 2013 Bureau of Labor Statistics Consumer Expenditure Survey including: (1) Cars and trucks (used), (2) gasoline and motor oil, (3) other vehicle expenses, and (4) public transportation. Values were inflated to 2014 dollars using the Consumer Price Index inflation multiplier from the Bureau of Labor Statistics.xii

Other Necessities.xiii The basic needs budget includes cost estimates for items not otherwise included in the major budget components such as clothing, personal care items, and housekeeping supplies. Expenditures for other necessities are based on 2012 data by household size from the 2013 Bureau of Labor Statistics Consumer Expenditure Survey including: (1) Apparel and services, (2) Housekeeping supplies, (3) Personal care products and services, (4) Reading, and (5) Miscellaneous. These costs were further adjusted for regional differences using annual expenditure shares reported by region.xiv Values were inflated to 2014 dollars using the Consumer Price Index inflation multiplier from the Bureau of Labor Statistics.xv

Taxes.xvi Estimates for payroll taxes, state income tax, and federal income tax are included in the calculation of a living wage. Property taxes and sales taxes are already represented in the budget estimates through the cost of rent and other necessities. A flat payroll tax and state income tax rate is applied to the basic needs budget. Payroll tax is a nationally representative rate as specified in the Federal Insurance Contributions Act.xvii

“Benefits” means comparable healthcare and paid time off benefits as workers of equal earnings receive in the public sector in the given area.




The People of the State of XX, represented in Senate and Assembly, do enact as follows:


1.  An amendment to the Public Health Law, to require that all accredited medical schools in the State of XX provide 120 hours or more of combined classroom and clinical experience in palliative care, including but not limited to hospice and end-of-life care, to all students matriculating toward the M.D. or D.O. degree, OR provide comparable hours required in the areas of pregnancy, childbirth, and neonatal care, whichever is greater. This applies to all those in undergraduate medical school.

2.  An amendment to the Public Health Law, to require that all accredited medical and post-graduate medical training programs schools in the State of XX provide 80 hours or more of combined classroom and clinical experience in end-of-life and palliative care to all resident doctors and fellows in the disciplines of internal medicine, family practice, general surgery, as well as the adult and pediatric subspecialties of critical care oncology, cardiology, pulmonology, nephrology, neurology, cardiology, and physical medicine and rehabilitation. This applies to all those in graduate medical training programs, i.e, residency and/or fellowship programs.

3.  To amend the Public Health Law to require that all accredited nursing schools in the State of XX provide equal or greater hours of combined classroom and clinical experience in palliative care, including but not limited to hospice and end-of-life care, as compared to the areas of pregnancy, childbirth, and neonatal care to all students matriculating toward the Nursing Baccalaureate degree.

4.  An amendment to the Public Health Law, to require that all accredited advance practice nursing and clinical nurse specialist training programs in the State of XX provide 80 hours or more of combined classroom and clinical experience in end-of-life and palliative care to all trainees in adult and pediatric specialties as a condition for receiving an advance nurse practitioner or clinical nurse specialist degree or certificate.



Medical and Nursing schools wishing to reduce hours of instructions in other disciplines and courses to meet this new requirement must receive permission to do so from the Commissioner of Health, in writing.


All Medical and Nursing schools are to have a two-year grace period within which to develop capacity to meet these requirements.  Those institutions or programs too small to support such a program must receive exemption from the Commissioner of Health, in writing, and will be required to develop a palliative rotation partnership with another institution.


5.  To amend the Public Health Law to require all hospitals with 300 or more active beds must have palliative care programs that meet or exceed The Joint Commission standards for staffing and services of palliative care programs.

6.  To amend the Public Health Law to require all hospitals of 200 or more active beds to have a palliative care program comprised at a minimum of 2 physicians or one physician and one nurse practitioner, 2 nurses, 1 social worker, 1 chaplain. Clinical services must be available every day, but weekend and night availability may be by phone, telehealth, or similar.

7.  To amend the Public Health Law to require all hospitals of under 200 active beds, including critical access facilities and out-patient care networks, to have a formal relationship with a larger hospital for providing access to palliative care. Telehealth or similar means are acceptable.

8.  To amend the Public Health Law to require all hospitals to educate patients in significant pain on what palliative care is, how it works, how it can benefit them, and the avenues of access.  This conversation should explicitly show patients the distinction between palliative care and hospice care and should explicitly explain that palliative care will not hasten death.

9.  To amend the Public Health Law to require all licensed Health facilities in the State of XX to meet or exceed levels of nurse, nurse assistant, and aide staffing and per-resident-per-day services as recommended by federal authorities, thereby ensuring proper attention to care and enhancing safety, and improving outcomes for patients.


Skilled nursing facilities and long-term care facilities must provide at least 4.1 hours of care per resident day (hprd).  Of this total, .75 RN hours per resident per day, .55 LVN hours per resident day, and 2.8 CNA hours per resident day are needed to deliver quality care, per Federal Congressional recommendations.


10.  To amend the Wage Law to require all home and community based care programs and licensed care facilities in the State of XX to provide a living wage and benefits and, in the case of facilities, to have no more than 25% of their full-time position hours with part-time workers.  The living wage can be determined by the prevailing wage offered by the public sector for comparable positions or by a studied metric for the region, which if the latter is used, should take into account the Personal Allowances on their W-4, confirmed by their most recent federal tax return and determine a living wage commensurately.

11.  To amend the Public Health Law to require all licensed care facilities in the State of XX to annually report turn-over rates for nursing and aid staff to the Departments of Public Health and Labor.

12.  To amend the Public Health Law to annually rescind licenses of care facilities ranking 1 star on Medicare’s quality star system.

13.  To amend the Public Health Law to only issue new licenses to care facilities that represent Greenhouse, Planetree, Beatitude, or substantially similar models of care. Other models that are substantially similar or exceed these standards to be reviewed and approved by the Department of Public Health or its designated palliative care task force subcommittee.

14.  To amend the Insurance Law of the State of XX, to require all carriers offering health insurance in the state to provide coverage for palliative care, including hospice care, as an option for patients designated as needing this care by supervising physicians, based on the needs of patients with chronic, life-threatening illness(es) and their families, without imposing a requirement that the insured forego disease treatments.


Within 120 days of the effective date of the “End of Life Quality Care Act” law, all carriers will inform the Commissioner of Insurance of their plans to provide coverage for palliative care, including conditions for accessing the care, financial stipulations and any limits to the coverage, as well as any co-payments or deductibles required of patients covered.

15.  This act specifically allows referring providers to disclose to patients and their families which hospices are non profit, for profit, and investor-owned for profit.

16.  This act shall take effect on the 60th day after it shall become a law, unless otherwise specified in the act.



MEMORANDUM in support of (Bill#), introduced by Senator XX.


Also known as the “End of Life Quality Care Act.”



In XX state, there is a clear paucity of options for citizens suffering with diseases and conditions that have brought them to the final chapter of their lives, with concomitant decisions regarding family management of health care and pain control.


There has been a lack of training in our medical schools that could ensure that doctors and nurses have a modern array of means to address palliative concerns and other end-of-life issues.


Studies show that most people with terminal conditions prefer to live and die at home, receiving the home and community based care necessary to make that possible.


Medical organizations providing institutional care for patients with chronic, life-threatening illnesses must also be required to provide staffing that is equal to the challenge of difficult nursing and support staff assignments.


There are many issues that arise with the low, poverty, or below-poverty wages and the generally non-existent benefits that are typically paid to health aids, including high turn over, decreased quality of care, and higher risk of abuse experienced by persons of advanced age and persons with disabilities.


In addition, if private health insurance companies and public agencies are not required to cover palliative and hospice care, many patients without the means to access this care will be forced to choose pain and other unmet needs over debt, and some would be pressured to choose death by suicide, rather than choosing the alternatives of excruciating pain, being a burden to their families, or crushing debt.


Furthermore, if hospitals of a certain size are not required to have serious palliative care programs, no patient, regardless of their insurance coverage, will have access to the care they need.


The End of Life Quality Care Act addresses the medical school instruction and post-graduate medical training gaps, the staffing issues that befall XX% of the organizations providing long-term care, and equitable access to palliative care by requiring insurance coverage and appropriately developed palliative programs in hospitals of size.


Too many of XX State’s patients at the end of life face the Hobson’s Choice of enduring unmet needs or succumbing to self-destructive thoughts or even actions, including ending their own lives.


Enhanced access to palliative care is an option that must become a bedrock principle for any humane society in the 21st Century.    The State of XX must support this option, bolstering the caring impulses of medical professionals, families, and the patients themselves.


Sections 1-5:

The first three sections of the bill require additional hours of instruction in all medical and nursing schools in the subject areas of end-of-life issues and palliative care.


Currently, all students enrolled in Nursing, medical school, residency & fellowship programs are required to take a certain number of hours of instruction in obstetric care, but none focusing on end of life (EOL) concerns.   This despite the fact that only XX% of medical doctors will be involved in obstetric care or concerns, yet virtually all doctors will be called to address EOL challenges.



The End of Life Quality Care Act will rectify this imbalance in medical education offerings in our state by mandating that all accredited medical schools require students to complete a minimum number of hours of instruction in end-of-life care and palliative training.


Sections 4 and 5 of the bill require hospitals of size to have palliative care programs with standards.  This will ensure access to most patients in our state by having it available at the institution they are in or one they are near.




Palliative Care programs have proven to save medical costs for patients by meeting their needs in less-intensive settings, including non-hospital settings, thereby reducing the burden to hospitals from patients who cannot pay; for Medicare, Medicaid, and insurers for those covered by those entities; and for the patient themselves and their families, who are often burdened by overwhelming healthcare costs that can bankrupt a middle class or underprivileged family with debt.

According to one study, the palliative care patients who were discharged alive had an adjusted net savings of $1696 in direct costs per admission (P = .004) and $279 in direct costs per day (P < .001) including significant reductions in laboratory and intensive care unit costs compared with usual care patients. The palliative care patients who died had an adjusted net savings of $4908 in direct costs per admission (P = .003) and $374 in direct costs per day (P < .001) including significant reductions in pharmacy, laboratory, and intensive care unit costs compared with usual care patients. (Cost savings associated with US hospital palliative care consultation programs, R.S. Morrison.)

Given these cost savings to the hospital and state funded insurance, legislators should consider how best to reallocate these funds to medical schools to off-set the costs incurred in the development and/or up-scaling of the palliative care curricula.  There will be some cost to each medical school, as curricula in EOL care are established.  XX State may wish to borrow from “best practices” and palliative care and end-of-life curricula that have served other states well.  As this discipline evolves in XX State’s medical schools, these institutions will surely share experiences and will borrow from each other, thereby increasing efficiency and decreasing cost.


Sections 6-10:



Although some home and community based care programs as well as institutions serving persons with chronic, life-threatening illness or with long-term care needs do provide adequate levels of staffing and decent wages, this is not universally true.


These sections of the End of Life Quality Care Act will ensure that all programs and  organizations providing acute care for persons with chronic, life-threatening illness or with long-term care needs pay a living wage to direct care workers.  These sections also require facility based providers to affirm and provide safe staffing levels.


Organizations with ample private financial endowment are more likely to be maintaining adequate or even generous levels of staffing, by using private dollars to subsidize payments received from the State of XX, municipalities, local counties, and the Federal government.


All institutions, but especially those with lesser resources, will be concerned about the short and long-term implications of an “unfunded mandate” from the capital.  Please see fiscal implications below.


This section will help staff to serve a growing and very needy constituency, at a time when patients will be at perhaps the most vulnerable and emotional time in their lives.


The End of Life Quality Care Act will ameliorate staff stress in care institutions and reduce “burnout” and the potential for elder and other forms of abuse, while enhancing attention and service to the suffering patient.  Low wages and unpredictable part-time hours adds an undue burden to health aids, increasing turnover, burnout, and the risk for abuse to those for whom they care.


A person who can access palliative care and pain management services more quickly (via adequate levels of staff being present) is a person who can live out his final days with more dignity, less discomfort, reduced anxiety about pain, and greater real human contact and concern.  The scary proposition of receiving care in an understaffed skilled nursing facility or long-term care residential facility, from under-paid and under-trained staff, contributes to the fear Americans have of losing their dignity if they lose their functional independence.  For many Americans, this seems like a fate worse than death.


Surveys of medical professionals suggest that the ability to keep patients comfortable with pain management is much more preferable to the professionals than all other options, including “death with dignity,” “aid in dying,” and other forms of assisted suicide and euthanasia.


Importance of Staffing by CA Advocates for Nursing Home Reform:


The quality of a nursing home’s care is directly related to the adequacy of its staff. Numerous studies have documented that residents’ health and safety are endangered by insufficient or poorly trained staff. For example, a 2004 report by the Institute of Medicine found:


“The relationship between nurse staffing levels and patient outcomes in nursing homes has been shown in numerous studies…Inadequate nurse staffing has been shown to be associated with malnutrition, starvation and dehydration in nursing homes.”


In a 2004 report, the California Department of Justice reported a direct link between understaffing and elder abuse:


“There is no more accurate indication of failure or success in the delivery of care than that of staffing levels. This is best evidenced by the fact that every corporate neglect case prosecuted by the BMFEA has involved understaffing as one of the underlying problems.”


Over the past 25 years, numerous research studies have documented a significant relationship between nurse staffing levels, particularly RN staffing, and the outcomes of care.9 The benefits of higher staffing levels, especially RNs, include lower mortality rates; improved physical functioning; less antibiotic use; fewer pressure ulcers, catheterized residents, and urinary tract infections; lower hospitalization rates; and less weight loss and dehydration. 4,6,10-12 Moreover, in states that have introduced higher minimum staffing standards for nursing homes, nurse staffing levels and quality outcomes have improved.



The Department of Health (DOH) will survey the home and facility based care programs and institutions across XX State to determine current staffing levels, followed by projections as to what increases in staff and wages will be needed, statewide, to comply with the End of Life Quality Care Act.


In addition, the Department of Human Services (DHS) will assess and tabulate the savings to the state in welfare programmatic costs were the health aid workers of our state paid at the living wage defined in Sec. 7 of the End of Life Quality Care Act.  A study in California showed that increasing hourly wages to $14 would save the state over $5 billion per year, in part because workers would no longer need to supplement their incomes with public benefits.  (Zabin, C., Dube, A., Jacobs, K. (2004). The hidden public costs of low wage jobs in California. The State of California Labor, Vol. 4, pp. 3–44. Available at: http://escholarship.org/uc/item/9hb1k75c#page-2).


The DOH and DHS findings will be shared with the Governor, the Office of Management and Budget, the Senate and the Assembly, so that funding for this vital initiative can be appropriated.


In order that the increase in staffing not be overly burdensome to our state’s nursing and long term care facilities, we recommend that minimum total nurse staffing level be established and that it be increased by 0.2 hrpd each year until the 4.1 hprd is the minimum standard. Facilities with higher than average acuity are expected to provide higher staffing than the minimum standard.

For RNs, the minimum standards should be at least 0.5 hrpd, excluding the Director of Nursing, which should be increased by at least 0.083 hrpd each year until 0.75 hrpd is reached.


Total licensed hours (RN and LVNs) should be 1.0 hprd and increased by 0.10 hprd each year until reaching at least 1.3 hrpd.


Certified nursing assistants should be at least 2.5 hprd and increased by at least 0.1 hprd each year until reaching at least 2.8 hprd.


In addition, we recommend that DOH be required to implement regulations establishing minimum staffing ratios for day, evening, and night shift for direct care staff that increases annually as the new standards are adopted.


In addition, audits of these staffing levels should examine compliance throughout the year, not just for a handful of days before inspections; and all audit findings and associated penalties should be promptly and clearly posted on the DOH website.


If one does not exist currently, legislators should consider appointing an ombudsman to investigate complaints and mediate resolutions on behalf of patients of long term and nursing care and their families.




The projected cost savings per patient with adequate access to palliative care and the cost savings in welfare costs to the state can be re-allocated and appropriated to the costs associated with increased staffing levels and wages by addressing Medicare, Medicaid, and insurance reimbursement amounts for elder, hospice, skilled nursing, and long-term home, community, and nursing facility care.  Although Medicare is Federally managed, the state would have ground with the evidence to petition for a review by the Centers for Medicare and Medicaid Services of reimbursement rates for services in-state.

To be sure, the Department of Health and the state’s elected officials must not only secure funds to support increased staff levels for patients at the end of life, they must also analyze data and perhaps reallocate funding to meet the possible needs of the audit process.  The DOH & DHS survey and projections will determine a more precise cost vs. savings analysis for this statewide staffing initiative to determine if adherence to the End of Life Quality Care Act will in fact cost the state any money and will perhaps show a surplus.


Sections 11-12

Sections 11 and 12 deal with the licensing of care facilities in State XX.  It is imperative to weed out bad care facilities that are providing sub-par care.  If we let them remain in business, it is a public affirmation of their practice and puts our patients at risk in low care quality situations with no recourse.  Issuing new licenses only to care facilities exhibiting a commitment to high level care would send a state-wide message  and up the bar in the industry across the board.  It would eventually weed out older, sub-par models of care.


Section 13

By allowing patients to receive hospice and/or palliative care AND still have the option to receive treatment care for their disease, would give patients the latitude and autonomy to determine their own care.  It would give patients the hope, in the case that they chose continued treatment while in hospice, that they may ‘graduate’ from hospice and continue to fight their illness.