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General interest items edited by Janice Flahiff

Stateline – New York enacts pioneering law linking all seriously ill patients to palliative care.

Stateline – New York enacts pioneering law linking all seriously ill patients to palliative care..

From the 4 March 2013 article

NEW YORK – The palliative care team at Mount Sinai Hospital gathers on a Thursday morning to exchange the latest information on the patients in their ward. It is a raw, unforgiving day outside, but the weather, the news, most everything beyond these walls are concerns that patients on this ward do not have the luxury to worry about. Theirs is a shrunken world measured in degrees of pain, blood pressure, heart rate, and a set of poor options – none of which any healthy person would welcome.

The simplest definition for palliative care is that it is treatment designed to reduce the pain, discomfort and stress associated with a serious disease. But it also entails eliciting from patients and families in dire circumstances their priorities and wishes to make sure the treatment conforms to those desires.

New York State felt so strongly about the importance of palliative care that last year it enacted pioneering legislation to make certain all those with advanced illnesses had access to this sort of treatment. Now other states are considering following New York’s lead.

Around the oval conference table sit two palliative care doctors, three palliative care nurses, a social worker, an art therapist and a chaplain, who, in this case, is a rabbi. Other nurses enter the room one-by-one to give updates on the patients they are tending to.

The unit is much quieter than most acute-care wards, with far less clattering and beeping medical machinery in order to keep the unit as serene as possible. Occupying one of the 13 beds in the unit today is a 28-year old Brooklyn man with liver failure. Death is imminent, one of the doctors, Stephen Berns, says. Days if not hours. Although the man’s pain can be addressed, his elderly grandparents worry that he will die before their parish priest arrives to perform a baptism. The rabbi, Edie Meyerson, tells the group that she has researched the issue and learned that any Christian can perform a baptism, if it should come to that.

A few doors down lies a 77-year old woman, a one-time deputy superintendent in the state’s corrections system. Her breast cancer has metastasized throughout her body and now all her organs are blinking off. Her closest relatives — two cousins and a niece, the latter her health proxy, have asked that she be removed from the ventilator that appears to be all that is keeping her alive. “We know this is not what she would want,” her cousin says later that day. “She would not want to be on all these machines.”

Then there is a 48-year old man from Puerto Rico with an inoperable tumor in his throat. His face is swollen to such an extent that he can’t open his eyes and his lips have ballooned into protuberances. He has found that even with painkillers, the only tolerable position is to sit cross-legged on his bed, leaning forward with his head cushioned on a pile of pillows. The team wants to start him on steroids to reduce the swelling, but the patient is already hinting that he has had enough.

Advanced Life Limiting Conditions

Not Enough Doctors
  • One palliative care doctor for every 1,300 patients with a serious illness in the U.S.
  • One oncologist for every 145 patients with a new cancer diagnosis
  • One cardiologist for every 71 heart attack victims
  • The American Academy of Hospice and Palliative Medicine Workforce Task Force estimates that there is shortage of as many as 18,000 palliative care doctors in the U.S.
Source: Center to Advance Palliative Care.

The cast of characters on the ward today is not atypical. Statistically, most patients on the ward will die here; a minority will improve enough to enable them to depart, usually to their homes, a nursing home or other health care facility. For all of them, the goal of the staff is to provide care that best accords with their wishes, whether that be an end to life-prolonging efforts, relief from the symptoms that are afflicting them, or some combination of the two.

The New York law passed last year ensures that everyone in the state with “advanced life limiting conditions or illnesses who might benefit from palliative care” not only be informed of these services by their healthcare provider but that the provider facilitate access to that care if they desire it. Violations are subject to fines of up to $10,000 and a prison term of up to a year. (According to the state health department, no one has yet been charged or prosecuted under the law.)

“That was a major step,” says Amber Jones, a consultant on palliative care in New York. “It shone a light on the need patients and families have for information.”

This year, legislatures in several other states are considering their own palliative care legislation at least partly modeled after the New York law. Those states include Rhode Island, New Hampshire, Connecticut, Vermont, Massachusetts, Arkansas and Michigan.

Even as legislation advances, there remains widespread confusion about what palliative care is. “There is a misunderstanding among the public that palliative care means end of life care,” says Jay Horton, director of the Palliative Care Consult Service at the Lilian and Benjamin Hertzberg Palliative Care Institute at Mount Sinai. “Many clinicians have the same view.” But the view is not accurate.

Palliative care provides an added layer of support for seriously ill persons and their families.  It is delivered alongside all other disease treatments, in an effort to ease the suffering caused by both the disease and its treatment. Palliative care is always part of the treatment for someone in hospice care, that is, someone with a short prognosis who wants to forego further disease intervention.

But palliative care is also appropriate for many others with serious or chronic illnesses, such as leukemia, lymphoma (which is cured in a significant number of patients), heart failure, emphysema, renal failure, and dementia (with which people can live for years.)  One common misconception about palliative care is that it is mutually exclusive with treatment for the underlying disease, that it only comes into play when all hope of cure is gone. That is not the case. “Just because you are undergoing palliative care doesn’t mean you are giving up on other treatment,” Horton says.

Discussing Options

Practitioners are quick to point out that palliative care, as it is practiced today, entails far more than the relieving of symptoms….

 

March 22, 2013 - Posted by | Consumer Health |

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