The Elephant in the Room: Long Term and End of Life Care in U.S. Healthcare Reform

Recent passage of the Senate healthcare bill has secured healthcare reform for our country, however, some critical elements have been sacrificed in the process.  These include the public option, funding for advanced care planning, and a comprehensive and thorough overhaul of long term care.  As many people on both sides of the debate are aware, health care in this country cannot truly be reformed until the ‘elephant in the room’ has been addressed and in this country that issue is long term and end-of-life care.

The costs of long term and end-of-life care are high, with more than one-fourth of Medicare spending going to cover healthcare for the last year of a patient’s life and more than two-thirds of the Medicaid budget going to cover nursing home care for persons who are aged and disabled.  Without a public option to control costs or advanced care planning to help people manage decision-making that is sorely needed at the end of life, is meaningful reform really possible?

One country which offers some clues for U.S. reform efforts, particularly in the area of long-term and end-of-life care, is The Netherlands, which employs one of the more successful and long time models of public-managed, privately-run health care.  According to the 2008 annual Euro Health Consumer Index, The Netherlands was ranked the best healthcare system in Europe.

Dutch healthcare is based on a cooperative government-private industry partnership, where the government monitors access and quality of healthcare, while leaving private industry to deliver health care.  Just as most of the current U.S. healthcare reform bills are proposing, health insurance companies in The Netherlands are legally obliged to provide a basic package of services at a flat rate to anyone who applies, regardless of previous condition.  The Dutch system makes a distinction between normal medical costs and high, long-term medical costs, covering these ‘exceptional’ costs through government funding.  The General Law for Extraordinary Medical Costs (AWBZ) is available to everyone to cover long term costs of nursing home care, some home care, and medical equipment. It is funded through a payroll tax on all workers.

One of the most important differences in the end-of-life care systems in The Netherlands and the U.S. is the proliferation of home care options in The Netherlands.  The Dutch national homecare service provides nursing and personal care services in the home up to four times per day and includes assistance with personal care, meals, medications, nursing care, and overnight respite (in which a nursing assistant spends the night to care for the patient as needed and to give the family time to sleep).

Compared to the current U.S. situation, in The Netherlands many more elderly are able to live at home with home care supports and fewer live and die in institutional settings.  In 2003, approximately one third of all persons who died in The Netherlands that year died in the hospital; more than one-quarter died at home and one-fifth died in either a residential/nursing, elder care or acute care nursing facility.  By contrast, in 2001 in the U.S., 57% of Americans died in hospitals, 20% died at home, and 17% died in nursing homes.

Where The Netherlands has been able to control costs through public option or a pooling of risks, the U.S. system is dominated by fragmentation and de-centralization.  Most providers in the U.S. operate independently with no one in charge of coordinating care or finding ways to improve care across providers. Medicare generally covers the first 100 days of skilled nursing, rehabilitation, limited prescription costs, and hospice care once a patient qualifies.  Long term care is largely provided by Medicaid, covering the cost of nursing home care, but only for Americans who drop below a certain income level.  The result – long term and end-of-life care is often overlooked and patients are left to deal with costs for end-of-life care for which there are little or no safety nets.

According to the American Association for Retired Persons (AARP), the bulk of long-term care in this country is provided by family and friends and the bulk of long-term care is paid for by personal savings accounts.  One study estimates that as much as one-third of families of patients hospitalized with serious illness lost most or all of their personal savings as a result of costs not paid for by other sources.

Threat of malpractice and an incentive system that encourages overtreatment by specialists have led to a system predicated on extending life at all cost – even when none of the participants (hospital staff, patients or families) view that as the best choice.  Advanced care planning and directives could ameliorate some of these issues, however, health care reform proponents abandoned support for counseling for end-of-life in the face of accusations that such counseling was equivalent to government “death panels.”

In voting yes to the current bill, Senator Jay Rockefeller, Chairman of the Senate Finance Subcommittee on Health Care noted:  “This yes vote is not an endorsement of this bill as it stands today. My vote is a pledge to continue on the Senate Floor and in Conference the fight for policies that work.”  Among the areas of concern that he noted missing in the current bill are a viable public health insurance option, regulation for the insurance industry, protecting and improving Medicaid, stronger affordability protections, improving health care information technology, and addressing end-of-life care.

Any healthcare reform effort that doesn’t address these items will ultimately fail to curb costs.  And until all parties are willing to address the elephant in the room – the rising cost of long term and end-of-life care – true healthcare reform will continue to be out of reach.


Frances Norwood, PhD is author of The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End-of-Life Care – Lessons from The Netherlands,” (2009) and director of research at Inclusion Research Institute in Washington, DC.


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