Virginia group working on end-of-life planning for terminal patients

At age 87, Stanley R. Ballou Jr. had multiple medical conditions and required nursing home care. He endured several infections and associated emergency hospitalizations. "Each time he lost a little more ground. There were more and more heroics on each trip to the hospital. He was never going to be the man he was," said his daughter-in-law, Lisa Ballou, a Williamsburg resident.

A month before he passed away in September 2012, Ballou Jr. enrolled in the POST program through Riverside Hospice in Tappahannock.

POST, Physician Orders for Scope of Treatment, is a form that gives detailed information about the end-of-life care desired by terminal patients, those in their last year of life. It is a value-neutral document that allows a patient, or their representative, to request specific care or to refuse it. Facilitated by a trained professional and signed by a physician, it has the heft of a medical order.

Advocates emphasize that the program is in the pilot stages in Virginia and is not available everywhere in the state yet.

Through POST, the family — Lisa and her husband, Tom, and his sister and brother-in-law who live out of state — was able to consult together to determine Ballou Jr.'s care. "We were really moving as a cohesive unit," said Lisa.

Together they considered such questions as the administration of antibiotics, the use of a feeding tube, and admission to an intensive care unit. "We were clearly able to define what steps were to be taken. It just allowed the end we knew was inevitable with a little less drama," said Ballou. "It was hugely beneficial. It was just more peaceful knowing there wasn't going to be that last panicked dash to the hospital."

The history of POST

It has been more than 20 years since POLST, Physician Orders for Life-Sustaining Treatment, started operation nationally to address patient care in the final year of life. Since 2011, the Virginia POST Collaborative has been working on its own model. The program, which relies on a patient having a portable document, has made slow inroads across the state. "You don't turn a battleship around in a small creek," said David Cochran, director of Sentara Center for Healthcare Ethics, who is on the state's executive board for the POST program. "Getting the word out is a collaborative approach. It's a monumental task."

Fellow executive board member Carol Wilson, director for Palliative Care and Advance Care Planning for Riverside Health System, agreed. "POST can only be implemented on a community-wide level. You can't create it in isolation."

POST was pioneered in Virginia by The Roanoke Valley Palliative Care Partnership in December 2009. This May, Laura Pole, RN, MSN, the pilot project coordinator, addressed the Virginia Caregiver Coalition via videoconference from Roanoke to spread the word about its importance for patients identified as terminal. Half a dozen coalition members gathered at the Peninsula Health Department in Newport News to learn about the care document. "It's for those with a serious, advanced, progressive disease," said Pole. To determine its appropriateness, one should ask the question, "Would I be surprised if this person died in the next year?"

Pole spelled out how having a living will and a medical power of attorney may not provide sufficient detail to ensure a dignified death, or one that a person wants. She gave the example of a 71-year-old man, resident in a skilled nursing facility, who suffered from COPD (chronic obstructive pulmonary disease) and dementia, who did not want aggressive life-saving measures. However, when a crisis occurred and the EMS responded, he was intubated, sedated and taken to a hospital intensive care unit despite both his family and staff at the nursing facility knowing he didn't want such aggressive treatment. A POST document, signed by a doctor, would have prevented that, Pole said.

In the absence of detailed instructions for end-of-life care, physicians typically pursue full interventions in the absence of instructions against it; by the same token, they may misinterpret a DNR (do not resuscitate order) to mean comfort-only care, Pole advised. The latter also has its limitations as it applies only to cardio-pulmonary arrest and not to all the preceding measures that might be taken. She emphasized that the importance of POST lies in its detail and that it's a physician's order — therefore EMS personnel, who default to resuscitation, cannot override it. "It saves a lot of pain and suffering on the part of the patient who gets a lot of unwanted treatment. It eliminates any guesswork," said Cochran.

'The conversation'

The two-part POST form, which is being revamped this summer, addresses options for when the heart has stopped in Part A, and, in Part B the level of medical intervention the patient wants in the last stages of life. Pole describes the latter as "where the rubber meets the road," detailing everything from comfort measures to limited intervention to full intervention with a separate section for the use of artificial nutrition and hydration. A POST form is designed to travel with a patient and does not have to be the original to be valid.

A trained facilitator — usually a nurse, social worker or chaplain — helps the patient or their medical agent complete the form in a process that takes about an hour. It must then be reviewed and signed by a physician. "It's not about restricting care. It's about matching values and desires. It's mostly about the conversation. It can be revoked and changed," said Pole. Riverside's Wilson also emphasizes the supreme importance of "the conversation," and talking to family to ascertain a patient's values and wishes.

"What's central to the process is the conversation. I've used it in terms of having the conversation. To me what has been most important is learning how they want their life to be, what's important in their life and death," said Paul Evans, medical director for Riverside PACE. For Evans, POST has been particularly important in dealing with cultural differences surrounding end-of-life issues. "People have reasonable concerns about why you are talking to me about this. They may not have had good care," he said. "The conversation has to be framed differently. The POST form is more culturally acceptable across the board. It starts with family and moves outward. They're in the driver's seat."

After several hours of online preparation, facilitators participate in an 8-hour training, including several hours of in-person role-playing. The Virginia POST group is in the process of developing an abbreviated training for physicians in order to gain more widespread participation.

For the Ballou family, separated by geography, POST provided a common space and expert guidance. "One of the greatest benefits of the program is sitting down in a non-emergent situation and working with folks that have the training. It just makes a rough situation a little easier," said Lisa Ballou.

The results

Stanley R. Ballou Jr.'s family opted for comfort measures only and he passed away in the home where he was resident, in familiar surroundings.