In 2007, it was estimated that every 72 seconds an American developed Alzheimer’s disease;⁵ and by mid-century, this diagnosis will be made every 33 seconds.⁶ Unless medical science finds a way to prevent or to treat effectively this disease, the predictions are that by 2050, the number of individuals aged 65 and over with Alzheimer’s could range from 11 million to 16 million.⁷ The Medicine Payment Advisory Committee—an independent commission that advises Congress—reported that from 1998 to 2008, Alzheimer’s and chronic dementia hospice cases grew from 28,000 to 174,000.⁸

In the United States, today, for Medicare Hospice Benefits to be activated, one must have a “terminal illness”⁹ which means that a patient’s medical prognosis is that he has only six months or less of life remaining.¹⁰ Within some 39 pages in the Code of Federal Regulations,¹¹ procedures are laid out carefully for the administration of hospice care and the scope of financial responsibility for the government—for which Medicare covers nearly all costs associated with this care.¹² Throughout these policies and regulations, the stated goal for hospice care is to provide assistance which “optimizes quality of life by anticipating, preventing and treating suffering,” and thereby “facilitate patient autonomy, access to information and choice” is unwavering.¹³

According to Medicare records, Medicare spending on hospice care from 2005 through 2009 rose 70% to $4.31 billion.¹⁴ The Inspector General for the U.S. Department of Health and Human Services found for-profit hospices were paid 29% more per beneficiary than non-profit hospices. Medicare pays for 84% of all hospice patients.¹⁵ All too frequently, for-profit hospices have been thought to “cherry pick” those patients who will live the longest and require the least amount of care—as for example, patients with dementia or Alzheimer’s rather than those with cancer.¹⁶

Very often, palliative care practice seeks to manage incurable illness in “the least unpleasant course” and thereby allow a patient to die from their incurable illness in a manner which is the least traumatic.¹⁷ In order for a competent patient to exercise his autonomy and be informed sufficiently to determine the course of his medical treatment or non-treatment, an admittedly “gruesome discussion about ways of dying” must follow;¹⁸ for, this then allows the patient to decide—essentially—which, of several terminal events, will end his life.¹⁹ Understandably, some patients will not be willing, or psychologically capable, of entering into such a discussion.²⁰ In situations of this nature, the health care decision-makers must attempt to discern the patient wishes by evaluating the patient’s “total good or best interests.”²¹ The challenge here is that if the patient is not informed, he cannot have a basis for formulating and evaluating ideas which promote his own best interests as he approaches his death.²²

The Act was signed into law in March 2011, and did not include any provisions concerning end-of-life planning.²⁵ Rather, it was added initially to a complex Medicare-proposed regulation by the U.S. Department of Health and Human Services, setting payment rates for physicians’ services during “annual wellness visits” for Medicare beneficiaries to include “advance care planning” for end-of-life management.²⁶ The final rule promulgated, however, excluded this very provision for consultation.²⁷

When forced to determine whether to offer life-prolonging and life-sustaining treatments to terminally ill autonomous patients, health care decision-makers should be guided by an evaluation of whether treatment measures are physiologically futile and the intrinsic burdens and risks they raise are overwhelmingly greater than their benefits;³⁰ or, in other words, is the ...