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Sep 10, 2009

Forget the politicians: the real debate about the end of life happens every day in hospitals and homes around the country.

By Greg Emerson Bocquet

A summer of screaming about who should decide whether Granny should live or die was based largely on myths and misconceptions. In fact, patients, families, insurance companies, doctors and hospitals all have a say in how and when terminally ill patients die. And the government is already partly paying for it.

Maria Cerro, 72, was admitted to the Jamaica Hospital Medical Center in Jamaica, N.Y. in March complaining of stomach pains. She had no insurance, and nowhere else to go. When the attending physician discovered her liver failure, Cerro was faced with several options, but only one outcome: her condition was chronic, and she would die within months.

Cerro came to New York 53 years ago after being rescued from the shipwrecked Andrea Doria, and has seen her share of hardship. Having been forced to rely only on herself for most of her life, she decided that her death would be the same: she would call the shots.

Like a million other Americans every year, she decided to forego additional tests or chemotherapy and transferred to a hospice to receive palliative care during her last months. And, also like many of those terminally ill patients, she entered the hospital without any knowledge of the end-of-life options available to her, a situation that current health care reform proposals seek to address.

Since she relies on Medicare to pay her medical costs, Cerro is supposed to have access to the information she needs to plan her care. The Patient Self-Determination Act of 1990 required all Medicare and Medicaid providers to tell patients about their right to accept or refuse treatment at the end of their lives.

In 2003, President George W. Bush extended these rights when he signed the Medicare Modernization Act, later declaring that “Medicare will, for the first time, cover hospice consultation services so that terminally ill patients and their families will better understand end-of-life issues and care options.”

John Fitzgerald, 64, knew nothing about the decisions faced at the end of life until he was forced to make choices for his 97-year-old mother, who was hospitalized after a stroke earlier this year. Like many people caring for aging parents, he had never asked his mother whether she wanted aggressive medical intervention to keep her alive at all costs if she fell ill.

After Eric Carrasco, fellow in palliative care at Jamaica Hospital Medical Center, described the process of artificial respiration that involves large plastic tubes being forced into the patient’s chest, Fitzgerald realized that “it won’t bring her back to normalcy.” He asked that they not continue artificial breathing.

Looking back on his mother’s last days, he is glad that she did not suffer by having machines briefly prolong her life. However, Fitzgerald regrets not having been better prepared for the decisions that needed to be made. “I should have taken her home because she probably would have rather been here when she passed away than in the hospital full of tubes. The inevitable was that she died.”

The health care reform proposals currently under consideration, including H.R. 3200, contain a provision to ensure that more people have access to information about those decisions. While existing legislation allows Medicare to cover the cost of one consultation on end-of-life issues with a health care provider, the House bill would allow one every five years, with an additional consultation covered when a person is diagnosed with a terminal condition.

But members of Congress are deeply divided about whether or not the government should play any role at all in providing for such counseling. The mere suggestion of extending coverage of end-of-life counseling has ignited fierce protests from conservatives. Misconceptions, notably about whether the bill mandates these consultations or reimburses voluntary consultations, fueled hysteria about government-run “death panels” that supposedly would deny care to ailing seniors.

If anything, the debate illustrates that talking about death is still a taboo subject for many people. Even within the medical community, palliative care is seen by some as violating the Hippocratic Oath that doctors take to “do no harm.”

“To some, we’re still the grim reaper,” says Dr. Alan Roth, chief of palliative medicine at Jamaica Hospital Medical Center. “Many doctors think denying people treatment is criminal,” he says, “but what is criminal is when a patient has expressed their wishes and those wishes are not followed.”

Religion also plays a significant role in decisions about end-of-life care. Kenneth R. Overberg, a Jesuit priest and professor at Xavier College, argues that when a patient is facing the end of their life, “ordinary means must be used; extraordinary means are optional.” But the distinction is subjective.

In response to inquiries from the U.S. Conference of Catholic Bishops, the Vatican issued a statement in 2007 affirming that even “a patient in a ‘permanent vegetative state’ is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.”

With that kind of guidance, it is not a surprise that the more religious are more averse to planning for death. A recent study in the Journal of the American Medical Association found that terminally ill patients who rely on religion to cope with illness were about three times more likely than those who did not to receive intensive life-prolonging care during the last week of life.

Perhaps for this reason, the palliative care team at Jamaica Hospital Medical Center relies heavily on the hospital chaplain to provide a non-denominational religious voice in end-of-life consultations. Father James Nunes is careful not to push any particular philosophy about end-of-life decisions on the patients he sees and advises.

“I think a good death can be any kind of death a patient wants,” says Nunes. “If a patient wants to die fighting, kicking and screaming against the disease, you fight, kick and scream with them.”

Additional reporting by Gaia Pianigiani and Paul Stephens

Resources

About Palliative Care
General topic page for hospice and palliative care from About.com

National Hospice and Palliative Care Organization
Information and statistics about end-of-life issues.

Center to Advance Palliative Care
Information and statistics about end-of-life issues.

Compassion and Support
Issues in geriatric medicine.

The Mayo Clinic
Information on living wills and advance directives for medical decisions.

Journal of Palliative Medicine
Academic publication on end-of-life issues.

Innovations in End-of-Life Care
Searchable archive of publications regarding practices in end-of-life care.

American Academy of Hospice and Palliative Medicine
Official organization of Medical professionals specializing in end-of-life care.


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I couldn’t agree more with Mr. Hills assessment that Obama needs to acquire some of the traits of his tenacious predessors including, as Mr. Hill suggests, the king of the political fight ,LBJ. But the big problem is that LBJ did not have to content with the professional lobbyists as they exist today nor soft and hard money abused legally by our elected officials. Obama’s task on the reformation of heath care would be much easier without all the PAC money and influence of pro lobbyists as it would limit the reach of the lies and distortions into the heart of the citizens of our country.

Mark Altekruse
Sep 26, 2009