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Easing End-of-Life Care

Pending legislation would make it easy to bring together patients, their physicians, and their families to map out how patients want to spend their last days.

End-of-life care is always a difficult issue.

In New Jersey it's also one that is both costly and aggressively pursued: The latest Medicare study by the nonprofit Dartmouth Atlas, which analyzes nationwide variations in healthcare, found that nearly 25 percent of New Jerseyans spent a week or more in the hospital intensive care unit in their last six months, compared with the national average of 15 percent. In that time they saw an average of 11 doctors, compared with eight for the nation. Medicare spending averaged $65,436 in the last two years of life in New Jersey, compared with $53,441 for the U.S., according to the Dartmouth Atlas review of 2003 to 2007 Medicare data.

Experts say the cost of end-of-life treatments can be reduced if patients diagnosed with a terminal illness were encouraged to write an end-of-life plan in consultation with physician and family. Legislation now on track in Trenton would bring to New Jersey a relatively new model of end-of-life planning known as the "Physician Orders for Life Sustaining Treatment," or POLST. Starting with Oregon in 1995, POLST laws are now on the books or under consideration in more than half the states.

Lawrence Downs, chief executive officer of the Medical Society of New Jersey, said "we are long-time supporters of POLST and we support the legislation." He noted that New Jersey's shortcomings with end-of-life care are well-documented. New Jersey "does not do as good a job of referring patients and their families to hospice care as other states -- and we know that care delivered at home is less expensive and more comfortable for patients in their last days."

New Jersey's initial POLST bill has passed the legislature and been amended to reflect a conditional veto by Gov. Chris Christie, whose veto message expressed concerns that the original bill would have allowed the patient's wishes to be overridden by the physician or the patient representative, without the patient's prior consent. The amended version, which supporters hope to see adopted by the lame duck session that ends in January, provides for the patient's POLST instructions to be adhered to unless the patient expressly gives the physician or the healthcare representative, also known as the healthcare proxy, the authority to override the POLST in the event the patient is incapacitated and no longer able to make decisions.

In 1991 New Jersey enacted a "living will" or advance directives law enabling individuals to designate a proxy and give instructions for the intensity of treatment in the event their health is compromised by an accident or sudden illness, or they are diagnosed with a terminal condition. The individual's advance directive might request cardiac resuscitation, for example, but reject being kept live on a ventilator or feeding tube.

But people typically create advance directives when they are healthy, said Jessica Cohen, director of governmental affairs for the New Jersey Hospital Association. She said POLST is designed to allow patients diagnosed with a life-limiting illness to express their specific goals for the remainder of their days.

Unlike advance directives, POLST must be signed by a physician or advanced practice nurse; consent is obtained either directly from the patient, if the patient is able, or from the proxy, legal guardian, spouse, or parent. POLST carries the authority of a medical order. It is part of the patient's medical record, and it follows the patient from one healthcare setting to another: home, ambulance, hospital, nursing facility, rehabilitation hospital, long-term care, hospice.

Supporters argue that POLST has the potential to be more effective in end-of-life care than advance directives. According to the bill, in many cases advance directives "are designed simply to name an individual to make healthcare decisions for the patient if the latter becomes incapacitated . . . and are often locked away in file drawers or safe deposit boxes and unavailable to health care providers."

In contrast, POLST will eventually guide first responders like ambulance squads, who arrive at the home of a critically ill individual and must decide whether or not to resuscitate from cardiac arrest. Electronic medical records are still years away for most individuals, but eventually the patient's EMR will include the advance directives and POLST.

"The purpose of POLST is to get patients and doctors talking about what patients want if they are no longer able to voice their preferences," said Don Pendley, president of the Hospice and Palliative Care Association of New Jersey. He said New Jersey ranks lower than other states in the use of hospice, where palliative care is administered, usually at home, to alleviate pain and suffering, and the focus is on providing comfort to the patient and emotional support to the family. Pendley said in New Jersey, "the average patient spends only 17 days in hospice, and that is not enough time for us to support the patient and the family during this awful crisis." He said nationally, the average length of hospice care is 26 days. "In New Jersey, patients get referred later to hospice, if they get referred at all."

Cohen said POLST encourages patients to make very specific plans for their last years or months of life. POLST ideally is used "while the patient is still able to communicate for themselves what they really want. So if I have stomach cancer and I have a year to live, I might say, "I don't want to be resuscitated for my cancer, but if I get hit by a bus, please resuscitate me because I'm trying to make it to my son's wedding."

People shun conversations about death; POLST aims to get this conversation started, Cohen said. "By normalizing this conversation we are saying 'look, it's okay to talk about it and you can have plans set forth to end a really great life."

Cohen said when the time comes to follow the instructions outlined in POLST -- which may or may not include resuscitation or a ventilator -- "Healthcare professionals have a greater level of comfort because they know that it [POLST] carries the weight of a physician's order, as opposed to the standard advance directive that in many cases does not have medical professionals involved in any way."

The legislation doesn't specify how New Jersey's POLST will read. A pilot began in March using a POLST form developed by a team led by Dr. David Barile, medical director of the acute care for the elderly unit at the University Medical Center of Princeton; participants in the pilot include UMCP and nine skilled nursing facilities in the Princeton area. The POLST pilot is part of a two-year initiative to improve the transition of older adults from the hospital to the community, which is funded by a $300,000 grant to UMCP from the Robert Wood Johnson Foundation. Barile said hundreds of patients have used the pilot's POLST form so far and once the legislation is passed, the experience gained by the pilot will help create a standard form that healthcare providers and their patients will use statewide.

Barile, who is board-certified in geriatric medicine and palliative care, is also executive director of New Jersey Goals of Care, a foundation whose aim is to empower healthcare teams and patients "to make specific treatment decisions that focus on achieving a specific goal that is determined by the patient," according to the foundation's mission statement.

Barile said the POLST form he and his team wrote for the pilot begins with the patient's goals.

The idea, Barile said, "is to align the available therapies with patient goals. So we ask that senior patient, that 70-, 80-, 90- or 100-year old patient, 'what are your hopes for the future?' and then simply organize all the medical care to help them achieve that particular goal. Health goals are different when you reach 85. For some it's longevity; for some it's quality: 'I want to be able to read again'; 'I want to live independently', 'I want to die a peaceful death at home'. Everybody's different." The goal of POLST, he said is "just to do one thing: get the entire medical team at the bedside to find out what the hopes are for the future for that patient--and then align those goals with any available therapies to help them achieve their goals."

Barile said most POLST forms in use around the country emphasize the patient's medical status, rather than the patient's goals. "Our form starts with the goals of care. The doctor simply asks, 'what are your goals for the future' and based on the answer to that question they complete the rest of the form."

Barile said if the patient's goal is to live as long as possible, the physician will make certain suggestions; if the goal is palliative care, the physician will make other suggestions. That conversation is then reflected in a medical order dealing with questions of resuscitation, ventilators and feeding tubes.

"A very common pitfall in medical decision-making is to spend too much time on [the patient's] code status—'what do we do when your heart stops?'" he said. Barile advocates starting with the end-of-life experience the patient desires, then creating a medical order that spells out the care designed to achieve that experience.

He especially objects to language in a POLST form that juxtaposes "full treatment" with "comfort care only." He said "this is lousy language because what it suggests is that hospice is not treatment. And that just reinforces this mutually exclusive relationship that palliative medicine has had with so called 'treatment.'"

Dr. Fred Jacobs, former state health commissioner and now head of the health care quality institute at Barnabas Health, said POLST is a good idea, but he said it remains to be seen if it will significantly increase the amount of end-of-life planning in New Jersey. He estimated that as few as 15 percent of Jerseyans have advance directives, which have been available for 20 years. But he said the key advantage of POLST is that it is a medical order that follows the patient after discharge from a hospital or other health care facility. "It enables the patient or the physician to know with some clarity what the wishes of that patient are under the circumstances outlined in the document."

Jacobs said POLST won't eliminate bedside disputes over an unconscious patient among relatives who either insist on aggressive medical treatment or letting nature take its course --regardless of what the patient spelled out in the POLST form.

Jacobs noted that advance directives never became popular and "a lot of it is a basic human feeling that 'who knows- maybe if I can live a little longer there will be a breakthrough, maybe something will happen. I don't want to give it up quite yet.'"

And he said many doctors "believe they need to offer extraordinary care in almost every situation. Doctors hate to lose, and if they allowed the patient to die and didn't do absolutely everything, then there would be a sense of guilt. And they are concerned about legal liability for not going as far as they felt the patient wanted them to go."

Education of the general public and the medical profession is essential to get New Jerseyans engaged in end of life planning, Jacobs said, and he urged the Medical Society of New Jersey to take this on as a major initiative. "This is a public health measure that goes to the heart of what being a physician is all about -- caring for your patient as an autonomous individual. The health department and the governor should be champions in providing education" about POLST, Jacobs said. He urged public officials to take a neutral posture on the issue of how much care should be delivered at the end of life, and simply "provide educational opportunities for the public to understand this."

Dr. Alan R. Pope, chief medical officer of Lourdes Health System in Camden, said "Decisions about limiting end-of-life care are personal, often difficult and may change with the medical condition." He said Lourdes' physicians have been collaborating with patients for years to help them make fully informed decisions, without a POLST form, but he said POLST "can be a useful tool to help ensure patients' end-of-life wishes are always sought, have clarity and are honored."

Jacobs said the POLST role in assisting first responders will be critical. "It would be appropriate and humane if there was some clarity which enabled these first responders to not go into maximum life saving mode [if that] is not what the patient wanted -- if it is not what was agreed to in a more reasoned discussion that was done with cool heads before the emergency developed. So I think [POLST] is a good step in the right direction. It gets the medical profession and their patients back to a common feeling of what is in the patient's best interest." Jacobs said it could take 30 minutes or more for patient and physician to complete the POLST form, and one issue that needs to be addressed is how the physician will be paid for this time. "I think it will be hard unless Medicare, which is the major payer here, decides they are actually going to pay for it."

Dr. Gregory Rokosz is chair of a physician executive group at the NJHA, and worked on a white paper issued by the NJHA in July 2010 advocating for POLST legislation. Rokosz is senior vice president for medical and academic affairs at Barnabas Health.

He said POLST should supplement the advance directive, which is normally created "when you are healthy and you are not at the end of life stage." He said POLST is flexible: "the goal could be aggressive care, it could be hospice or palliative care or it could be somewhere in between."

Rokosz noted that, "when patients can speak for themselves they direct their own care; they can change their mind at any time," about decisions they've made in the POLST.

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