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
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.
Practitioners are quick to point out that palliative care, as it is practiced today, entails far more than the relieving of symptoms. Providers with specialized palliative care training help patients and their families understand complicated medical terminology and the options facing them. They also elicit from their patients what their goals are in the face of what is likely to be a grim situation. Some patients, for example, might be willing to endure any number of invasive procedures in order to extend their lives. Others might prefer to forego such treatments, focusing instead on living at home and making their last days or months meaningful without pain or extensive medical intervention.
Disease specialists – oncologists, cardiologists, neurologists and others – may well be capable of conducting those conversations and alleviating discomfort. But many are trained to focus only on disease as opposed to quality of life, and are ill-equipped to carry on those conversations; others are loath to give up on “curing” the patient no matter how long the odds or how painful for the patient. “Physicians are trained to treat and cure,” says Kathy McMahon, head of the Hospice and Palliative Care Association of New York State. “They feel like failures if they are not able to cure the patient.”
Under the New York law, physicians and nurse practitioners caring for patients with advanced diseases are required to offer patients (or their proxies) information and counseling on palliative and end-of-life options. The law doesn’t require those providers and institutions to provide palliative care consultation and services, but they must “facilitate access” to those services.
That might seem to promise palliative care services in all appropriate cases. But there is a very large problem. “One of the big challenges to assuring quality of care for all who need it is the workforce crisis,” says Diane Meier, director of the Center to Advance Palliative Care (CAPC). “There are not nearly enough physicians, nursing and social workers with palliative care training.” Although palliative medicine is now a board-certified sub-specialty, nearly half the states offer no post-graduate training in the area.
In New York, the state legislature appropriated $4.7 million in 2007 for palliative care training, but when the recession hit, the money went to other state needs. Meier and other health care advocates in New York are trying to raise money through private donors for palliative care outreach and training. Meanwhile, the Hospice and Palliative Care Association of New York State, the Health Care Association of New York State, and the CAPC are working on web-based outreach.
The workforce shortage relates to another significant problem, which is the poor reimbursement rate for palliative care, particularly for the consultations with patients and their families, which palliative care doctors regard as essential in providing truly patient-centered care. Palliative care is reimbursed at a far lower rate than high-tech services, such as chemotherapy infusions, cardiac catheterization or surgery. Horton says that the reimbursement does not come close to compensating for the care provided. “It makes it hard to keep our doors open,” Horton admits. In fact, the doors only remain open because Mt. Sinai is willing to chip in for what reimbursement doesn’t cover.
But if palliative care doesn’t bring in much money, studies show that it does contribute to significant savings while also improving outcomes. One study co-authored by Meier showed that hospital expenses for those receiving palliative services were $2,642 less per admission than for comparable patients not receiving those services. With as much as 30 percent of Medicare spending going to the 6 percent of Medicare patients who die each year, palliative care offers a promising means for saving money while also delivering medicine that accords with people’s wishes.
Back on the Mount Sinai palliative care unit, the 28-year old man with liver disease died on Saturday. But he had been baptized by then and received last rites. As to the former corrections official, with her room full of family members, she was removed from the ventilator Thursday afternoon. She continued to breathe on her own that day, and the next one, and the next and the next. She died quietly Sunday night.
That leaves the man with the swollen face. His oncologist reported back that there were no more treatment options for his cancer. With that, the palliative care unit administered steroids, which relieved much of the swelling. He was able to lift his head off the pillow and move without excessive discomfort, though the steroids did disorient him some. His one request was that someone sit with him. One of the nurses did so, holding on to his hand.