Preparing for End of Life in Arlington

Preparing for End of Life in Arlington

After an advance directive, a POST form.

Hospice and palliative care doctors like Dr. Matt Kestenbaum of Arlington's Capital Caring Hospice have been engaging in discussions with their patients about their final wishes regarding medical treatment for as long as they've been practicing end-of-life care. It has always been standard in this part of the medical community for doctors to have ongoing end-of-life care plan discussions with their patients so that treating physicians can best honor patient wishes regarding their care setting in the final stages of life.

It has only been in the last decade, however, that Virginia doctors have had access to a standardized form to convert these patient wishes into actionable orders for patients in the midst of terminal medical crises.

Introduced in 2007, the Physician Orders for Scope of Treatment (POST) program provides an official form for patients with serious illness or frailty. This POST form makes it possible for doctors to turn their patients’ clearly stated end-of-care wishes into an action plan, going one step further than a simple advance directive. The POST form is respected across care settings.

“These are conversations we’ve always had with our patients, but we didn’t have a standardized way to document the outcomes of the discussion,” Kestenbaum said. "The POST program and form has allowed us to put some structure in place to what we have been doing for decades."

Virginia's POST program is part of a national movement that started nearly 30 years ago in Oregon, to ensure that physicians would be able to respect and adhere to the medical care preferences of terminally ill patients. Too often, advance directives are murky and difficult for doctors to follow and, thus, wishes stated in them aren't always easy, or even possible, to honor.

"We are part of the National Physicians Orders for Life Sustaining Treatment (POLST) Paradigm," Kestenbaum said. “The philosophy behind that organization, which started in Oregon, is to facilitate communication between health care providers and patients so that the treatment plan for patients with serious illness and frailty are consistent with their preferences. With that as their guiding principle, the approach began to spread across the United States. You have to stick to the principles of the national movement to be endorsed by the National POLST Paradigm – even if you change the acronym to POST, as we did in Virginia.”

Since it is an optional program, not all medical facilities in the state make the POST form a part of advance care planning for eligible patients. Hospice and palliative care providers, however, increasingly see only benefits to encouraging use of the form, so the POST community is on the rise.

"From a medical perspective, there is no reason not to participate," Kestenbaum said. "It might not be the perfect solution, but it is certainly the best one studied to date. Part of the hesitation in Virginia is that some people are confused about the legal status, so providers were scared to use it. As of November of 2016, though, the Durable Do Not Resuscitation (DNR) regulations in Virginia were amended to eliminate any possible concern about this form or program."

For years, the POST form has been recognized by the Virginia Department of Health. Even before the November 2016 amendment, the Durable DNR Fact Sheet available on the official website mentioned POST.

"Now it absolutely clear to everybody that this form is able to be used by patients for whom it's appropriate without any hesitation," he said. "The form is so important and necessary and helpful that the department eliminated any possible legal worries over it."

Kestenbaum, a board certified internist with specialty certification in Hospice and Palliative Medicine, has been a hospice physician at Capital Caring since 2006. Capital Caring is an organization that sets out to improve end-of-life care and quality of life for people with chronic progressive illness. Capital Caring operates four acute care hospice centers, with the Arlington center being one of two in Virginia.

“As has been the case for our nearly 40 years of service, Capital Caring's mission is to simply improve care for the 1,200 moms and dads we comfort every day of the year throughout our service area, including more than 150 right here in Arlington,” said Mathew Gulick, director of communications for Capital Caring, said. “The POST Program helps us achieve our mission by offering another tool that ensures those patients have had an opportunity to clearly share their values, goals of care, and treatment preferences. POST forms are invaluable tools in reducing stress during particularly challenging times for patients and their families.”

While Capital Caring wasn’t the first care provider in Virginia to implement POLST guidelines, the organization quickly supported and implemented the program’s tenets.

"The POST program in Virginia started in 2007, when the medical community in Roanoke began using POLST guidelines as local best practice," Kestenbaum said. "Since then, the standard spread throughout the state. Northern Virginia signed on very quickly."

So many physicians rallied behind these POST principles that they began meeting regularly, eventually forming the Virginia Post Collaborative. This governing group was vital in order to unify and organize enough power, momentum and resources needed for the Virginia program to achieve the National POLST Program endorsement.

"When we formed the Collaborative, we knew we wanted endorsement from the National POLST program," said Kestenbaum, also associate medical director for the Virginia Post Collaborative. "The endorsement is a process, and we wanted to be sure we got that stamp for Virginia. One of the things they look for is that there is some administrative structure, a way to administer the program and make sure it is sustainable."

Kestenbaum has been on the executive committee since 2013, when the Collaborative became the official governing agency of POST, with 13 regional programs to oversee statewide.

In 2015, Capital Caring was chosen as the home of the Virginia Post Collaborative. The POST organization carries out all of its administrative functions from Capital Caring's Falls Church headquarters.

Kestenbaum also plays a second role to further the mission. He is a regional coordinator, so he works closely with seven other counties outside of Arlington.

As a doctor who has spent more than two decades caring for people in the final — and often most painful — stages of their lives, Kestenbaum knows how important it is to have clarity around the way one want his or her life to end.

Every adult, as soon as they turn 18, should create an advance directive, he emphasized. Death is an eventuality for all of us, so, the advance directive exists for you to state your wishes about your health care when your life is ending. Then, once you enter the phase of life characterized by serious illness or frailty, or, your physician's prognosis for your life is a year or less, it is prudent to seek out a POST form.

Ideally, Kestenbaum said, one’s doctor in this situation would introduce the form in the same conversation where he or she begins the discussion of what is wanted during the stages of medical care. Physicians should also update the advance care plan as a patient’s condition progresses.

As advantageous as the POST form is to anyone in this situation, Kestenbaum added, it is by no means a requirement.

"This is completely voluntary," he said. "No one is forced to fill out a POST form. The main group of folks for whom it is most beneficial is for those who are seriously ill or frail, with a prognosis of a year or less. This is not for everyone. For people not quite there, the best way to state your preferences is through an advance directive. Prior to entering that time of life, you want to have that conversation with the people in your life, but a POST form is not yet applicable."

Kestenbaum explained that an advance directive and a POST form should always be consistent. It is also important to know that a patient can edit both forms as many times as they need should their wishes change or when their health conditions take turns. And, while the two documents should never have conflicting directions, there are important differences.

"An advance directive is for any adult to help people understand their wishes pertaining to future care and to provide as much guidance as possible for future events," he said. "It's a set of wishes, desires, and preferences, for what people want in different outcomes. A POST form is an actual medical order, and is only for those in a current situation of needing this type of care. We recommend that all adults have an advance directive, and when appropriate, fill out a POST form, which turns the preferences stated in your advance directive into actionable direct orders."

For a POST form to be valid, he added, it must signed by both the patient, or a valid surrogate, and the health care provider — a physician, nurse practitioner, or physician assistant.

While coming to terms with the last phase of life will always be difficult, there is a certain amount of peace that people in this situation find in knowing with certainty that they will exit life as they know it in their exact desired manner.

"Advance directives may not always be available or they might hard to interpret, so what the research has shown us, is that it is more likely that the wishes and desires of patients with POST forms will be respected. There is a fairly large and growing volume of literature showing that POST ensures that a patient’s end of life decisions are met. More and more programs and practitioners want to be a part of this program every day," Kestenbaum said.