To:                  Hon. Charles Rangel, Chair, House Ways and Means Committee

From:              Claire H. Altman,  Director of Capital Projects, HealthCare Chaplaincy

Re:                  Proposal to Develop a National Strategy for End-of-Life Care That Reduces Cost and
                        Increases Quality of Care

Date:               April 16, 2009

Summary

The United States health care system is poorly organized to address end-of-life care. This brief will make the case for a new national strategy to reduce cost and increase quality of care.  End-of-life care is one of several major areas in health care where the status quo both raises costs to the system and decreases consumer service and satisfaction.  Patients, families, and staff often agree the patient is best served by less aggressive medical intervention, but inertia, lack of education, and reimbursement structures in the system push powerfully for continued treatment.  An urgent need exists for a coordinated, system-wide approach to providing end-of-life care that focuses on quality of care for individuals and their families while avoiding extraordinary costs – often for unwanted and unnecessary interventions. The United Kingdom issued a “Strategy for End-of-Life Care” in July 2007 that could serve as a guide for a U.S. plan.

Background
Dying has been viewed as a medical event in American hospitals, a mind-set that limits the capacity of the health care system to provide optimum quality of care and to contain costs.  End-of-life with dignity, however, is a profound spiritual event for patients, families, and oftentimes staff.  If handled well, the spiritual dimension of “une belle mort,” a good death, can reduce costs and emotional suffering.

In addition to the need to provide end of life care that is more responsive to patients’ needs and desires, there is an opportunity for significant cost savings .  Twenty-five percent of the annual Medicare budget of $627 billion is spent on care for persons in the last year of life, with 40% of that number spent in the last 30 days.  Medical care at the end of life consumes 10-12% of the nation’s total health care budget. [1] These numbers have not changed significantly over the last ten years despite the fact that in-patient, residential and home hospice care services are less costly and underutilized--and provide higher quality service.  Existing data (mainly from the 1980’s) suggest that hospice and advance directives can save between 25 and 40% of health care costs during the last month of life, with savings decreasing to 10-17% over the last six months of life.[2] The Congressional Budget Office forecasts that the cost of long term care will reach $207 billion in 2020 and $346 billion in 2040.[3]

Exploding health care costs and unnecessary patient suffering will only accelerate with the exponential growth in the population over 65 that will live longer, have more chronic diseases, and require more care in their last years. [4]  People 85 years of age and older – those most likely to need expensive long term care – were 1.7% of the US population in 2005 but are expected to grow to 2.2% in 2020 – an increase of 38% only 11 years from now.[5]

Poor quality and high end-of-life care costs have many causes, which include:

·         The challenges of dealing with death for health care professionals, who often do not know about their patients’ preferences for end-of-life care. [6]

·         Patients and their families not understanding their choices at end-of-life. [7]

·         Focus of medicine on curing disease and viewing death as the enemy or as a failure.[8]

·         Most insurance plans do not cover services that are necessary for good quality end-of- life care. Traditional health insurance favors high-tech/high-cost services and inpatient hospital care.[9]

·         Health coverage is often linked to site of care provided, rather than the person, and by time limits not by the amount of service needed.[10]

·         Many dying patients may be better served with comfort care and interventions that help families deal with forgiveness, reconciliation, and other topics that arise at the end-of-life.

·         Issues around access: Medicare beneficiaries who die in low income areas have higher end-of-life costs, are less likely to use hospices, and are more likely to die in a hospital than the general population.[11]

Development of a National Strategy for End-of-Life Care

It is critical to identify the barriers and incentives to moving larger numbers of dying patients, earlier in their disease paths, from acute treatment to comfort care into environments that are characterized by sensitivity and respect.  Conceptual and ethical challenges are inherent in this topic, but research can identify innovative, cost-effective solutions in the best interests of patients, state and federal governments, and hospitals.[12] New thinking is needed about the management of death and dying.  New frameworks are needed that utilize the most effective intervention points by which to move the health care culture toward an approach to end-of-life care in which the whole person is served with medical and spiritual tasks better balanced than they are today.

The national health reform effort needs to include a national strategy for end-of-life care. This could be accomplished within 6-12 months with the immediate appointment of a National Panel of the leaders in end-of-life care to:   inventory the challenges and innovative programs nationwide; propose new policy frameworks at the federal and state level; and propose critical demonstration projects.

Some of the issues to be addressed include:

·         Identifying communication and cultural competency problems that impede the ability of health care professionals to communicate effectively with patients and their families about death and dying, thereby limiting patients’ abilities to make informed choices;

·         Identifying innovative approaches to educating health care professionals about death and dying;

·         Documenting issues related to culture, communication, and dying that lead to unwanted and unnecessary treatments;

·         Recommending financial incentives to hospitals for discussing advanced directives with every patient and her family (if applicable) and for obtaining signed advanced directives; and

·        Authorizing Medicare demonstration programs to provide reimbursement for assisted living programs for persons with serious progressive illness and/or terminal diagnoses to test the hypothesis that this care option might be preferred by individuals and be more cost effective than the current pattern of frequent hospitalizations and high tech interventions in the last year of a patient’s life. Individuals might choose compassionate care over acute care or skilled nursing care; if reimbursement were available (reimbursement might be limited to those with annual incomes of less than $100,000).[13]

HealthCare Chaplaincy is committed to working with other organizations that share these goals to assist the Health Reform movement to achieve a coordinated, integrated strategy for quality end-of-life care.

[1] Emanuel, EJ, “Cost Savings at End of Life. What do the data show?” JAMA, Vol. 275, No.24, 6/26/96.

[2] Hogan, Christopher, et.al., “Medicare Beneficiaries’ Cost of Care in the Last Years of Life,” Healthaffairs.org/cgi/content/abstract/20/4/188, 2001.

[3] “Redefining and Reforming Health Care for the Last Years of Life,” RAND Health Research Highlight, 2008.

[4] Ibid..

[5] “The New York Long-Term Care Compact Proposal: Update, Analysis, and Recommendations,” Stephen A. Moses, President, Center for Long-Term Care Reform, 2008, p.2

[6] “End of Life Issues and Care,” Issues of Access and Variability in Health Care at the End of Life,” http://www.apa.org/pi/eol/access.html.

[7] Valente, Sharone, and Bill Haley, “Culturally Diverse Communities and End of Life Care, American Psychological Association.

[8] Ibid.

[9] Raphael, Carol, PPA, Joann Ahrens, MPA and Nicole Fowler, MHSA, “Financing end of life care in the USA,” Journal of the Royal Society of Medicine, v. 95(9), Sept. 2001.

[10] Ibid.

[11] Hogan, etc. al.

[12] End of Life Care Strategy, United Kingdom, July 2008.

[13] Assisted living offers an option that is half the cost of skilled nursing care and a fraction of the cost of acute hospital care. Current regulations in New York State, for example, permit assisted living residences that apply for an enhanced assisted living license to care for residents through the end of life, bringing in necessary skilled nursing and hospice care. Persons facing serious progressive illness and end-o- life want an environment that offers autonomy, independence, and privacy. Assisted living communities are organized so family members can spend time with the individual in a non-medicalized but supportive setting, in which basic care (assistance with activities of daily living) are provided. This ensures the “peace of mind” that family members need and want without the institutional model of a hospital or nursing home.