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With the announcement by the Centers for Medicare and Medicaid Services (CMS) that it plans to begin paying providers to engage patients in end-of-life planning discussions, experts suggest emergency providers will need to up their game in terms of both discussing end-of-life care options with patients and families, as well interpreting choices that patients have spelled out in advance planning documents. A final decision on the proposal is not expected until November, but CMS has signaled that it is ready to implement the policy in January 2016.
• Experts suggest the move will ultimately give emergency providers clearer direction on patient preferences when they present for care with end-stage conditions.
• They also agree that more specialty training is needed to educate providers on how to effectively engage patients and families in advance planning discussions.
• Experts also advise hospitals to consider quality control procedures to ensure patient choices regarding end-of-life care are being followed.
In a move many consider long overdue, the Centers for Medicare and Medicaid Services (CMS) has signaled that it is now prepared to reimburse providers for advance care planning discussions.
Such conversations are already covered when patients first enroll in Medicare, but acknowledging that more flexibility in the timing, and perhaps frequency, of these conversations is needed, CMS is proposing to set up a separate payment system along with advance care planning codes so these conversations can take place at the most appropriate time for patients and families.
While the details regarding any documentation requirements and reimbursement levels are still being worked out, and final approval still must take place, CMS proposes to implement the new policy in January 2016.
That means hospital administrators need to review what resources they have in place to help patients and their families make these important decisions, and to consider what policy changes may be needed to ensure providers are equipped with the skills and training required to provide this service. (Also see: “More education, support on end-of-life care issues needed for prehospital providers" at the end of this story.)
Further, experts suggest emergency providers in particular may need to up their game with respect to both discussing treatment and palliative care options for patients who present with end-stage diseases and conditions, and interpreting the choices of patients who have already made their wishes known in advance care planning documents.
Bernard Hammes, PhD, the director of Medical Humanities and Respecting Choices, an advance care planning program established by the Gundersen Health System in La Crosse, WI, suggests emergency providers have much to gain from having this type of payment system in place for advance care planning discussions. “They would then have the likelihood that when patients come [into the ED] in an emergency and have a serious medical problem they will have some clearer direction about who is going to make decisions when the patient can’t and what decisions might be favored or preferred by the patient,” he explains.
Hammes is in a position to know about the impact of advance planning because the Respecting Choices model has been in place in La Crosse, WI, for more than 20 years. “For adult residents of La Crosse County who come and receive care in any care setting at the end of life, 96% of the time we have a written care plan in the medical record,” he says. “It is quite possible that in the ED a decision can be made not to proceed to surgery or not to proceed to the ICU because the medical condition of the patient is so clearly identified and the health care agent is so understanding of the patient’s preferences — [which are] so clear that they are in the medical record. The family and the doctor in those circumstances can say, ‘call palliative care and have them take over management of the care of this patient from this point in the ED going forward.’”
Hammes observes that while advance health care planning should take place long before the patient presents to the ED, it nonetheless impacts emergency services. “It allows the right decision to be made at the right time for that patient and that family,” he says.
Further, while the CMS proposal is a “great first step,” according to Hammes, he notes that more steps are needed. “What Medicare is putting into place is the potential or the proposal to pay at least some group of providers to initiate and have these conversations, but there are other things that need to be put into place,” he explains. “We have to have a way of capturing that [advance] care plan in the medical record so that it is actually available in the ED, and then we also have to train emergency physicians how to look at, to read, to understand, and then appropriately use that plan in decision-making, even in an emergency.”
Many experts believe emergency providers have been forced into plugging gaps in existing end of life issues, and that the federal effort to improve availability and consistency of this planning process will reduce the burden on the emergency system in significant ways.
Mary Minton, PhD, the associate dean of the graduate nursing program at South Dakota State University in Brookings, SD, is pleased that CMS has plans to reimburse for end-of-life discussions, but having led a team of researchers to investigate what palliative care and end-of-life resources are available in a range of health care facilities in her state, she anticipates a steep learning curve ahead.
“It will require specialty training, because this is not a skill that most of us are equipped with. Some of us intuitively are open to engaging in [end-of-life care discussions], but by and large our medical model, our health care culture, is still rather cure-oriented,” Minton says. “So I love that this is happening, but it must be addressed with a deep amount of intention, planning, and evaluation.”
Minton observes that there are a number of well-established educational programs that address end-of-life planning and care, including Education in Palliative and End-of-Life Care (EPEC), which offers a range of curricula geared toward different specialty areas, including emergency medicine (www.epec.net), and the End-of-Life Nursing Education Consortium (ELNEC) of the American Association of Colleges of Nursing, which offers programs for nurses (www.aacn.nche.edu/elnec). The Respecting Choices program in La Crosse, WI, also offers education and training in a range of formats (www.gundersenhealth.org/respecting-choices/training-and-certification/online-courses/facilitator-curriculum).
Minton envisions the need for a two-pronged effort aimed at equipping medical providers with the knowledge and skill to both discuss end-of-life care and interpret patient instructions. “We have to focus on our undergraduate and graduate programs, but we also have to equip our practicing providers because they are the ones dealing with the complexity of the health care environment. Sometimes it appears there is no time for this conversation or counseling, which is why intention is so important,” she explains. “To put this as a billable item — that ratchets it up to a place of importance so that it is a line item ... but my concern is that it needs to be lockstep in that we always make sure we address it, but not at a surface level, because this kind of conversation requires repetition.”
Further, Minton stresses that end-of-life planning needs to be an interdisciplinary exercise. “In my work in palliative and end-of-life care, the team is the hub. It is a team process of communication, whether it involves deciding what treatment [options] to choose, considering how to interpret patient wishes, or how to manage symptoms,” she says. “It is complex, and despite the documents that might be in place and the discussion that has taken place, at any given moment it can still be a moving target.”
In all of these scenarios, the burden of discussion shifts into the primary care arena, and the practices of physicians who see patients with terminal illnesses will see the most change, and will receive the most reimbursement.
Hammes is eager to get the details regarding how reimbursement would work under the CMS proposal, and he intends to offer suggestions during the comment period that CMS is facilitating regarding who should be having these end-of-life planning discussions with patients.
“These are complex conversations and not everyone has the knowledge or communication skills to do this well, and so if I have a concern about Medicare’s decision, it is that while I support the concept of providers being paid for this, I think we still haven’t had a conversation about who should be providing this service,” Hammes says. “Our experience in Respecting Choices is that physicians simply do not have enough time, when you look at all their responsibilities and obligations to patients, to have this additional responsibility.”
Hammes also intends to offer input to CMS about the training required to skillfully conduct these advance planning conversations. “We wouldn’t pay a family practice physician to do open heart surgery because they are not trained to do open heart surgery,” he says. “This does take skill, it does take competence, and it does take knowledge, and if people are going to have these conversations, I think they should have the competence to do it, and do it well so that the service we are paying for is actually beneficial to the patient and the family.”
While physicians may not be in the best position to conduct end-of-life planning conversations, they nonetheless need to be involved, Hammes stresses. “The physician has two important roles here. One is to introduce the topic to the patient, and to say to his or her patient that this is something we routinely do, and we know we can provide better care to our patients and their families when they are willing to engage with us in this planning process,” he says, noting the patient can then be handed off to a specialist who has the time to sit down with the family and have the full discussion. “This kind of motivation or introduction by the physician is really important in engaging the patient.”
The second important role for the physician has to do with answering questions about treatment options, diagnoses, and other medical issues that impact the planning process, Hammes explains. “Facilitators need to be trained so that they work collaboratively with the physician so that when a patient says they have a question about their medical condition or that they don’t know if they understand it well enough, the facilitator knows how then to bring the physician into that discussion to get the information needed by the patient.”
A third area where Hammes plans to offer suggestions to CMS has to do with what specifically should take place in the course of an advance planning session. “Many of us have some very clear, well-researched ideas about what things actually matter and help in these discussions, and what kind of training is required for that assistance to actually be beneficial,” he says. “If it is simply handing a document to someone and saying, ‘let me show you how to fill out the boxes,’ that is not planning. That is filling out paperwork, which we know doesn’t work, and sometimes creates more problems than it solves. So there are some very clear things that need to happen in terms of the planning process.”
Once systems and policies are in place to integrate advance care planning into the care process, hospitals need to take steps to ensure quality, Hammes advises. He observes that one way Gundersen Lutheran Medical Center does this is by leveraging the hospital’s existing quality infrastructure.
“Like every hospital, we have a peer review committee that reviews the deaths of patients in our hospital to make sure there were no mistakes and that high quality care was provided despite the outcome,” Hammes notes. “One of the things that our peer review committee always looks at is whether the patient had an advance directive, and if they did, was it appropriately used by the treating physician in making decisions.”
For instance, if the peer review committee found that an emergency physician ignored, misread, or misused a patient’s set of preferences, that would be something they would take up with the physician to find out why there is a discrepancy between the patient’s wishes and what the physician did, Hammes explains.
“There are lots of things that can happen … but at our hospital, if in fact the physician does not appropriately use the advance directive in decision-making, we consider that a medical error,” Hammes notes. “That would be called out, and there would be some sort of corrective action taken, if needed.”
While the next steps may be complex, Hammes urges hospital administrators to acknowledge there is ample room for improvement when it comes to end-of-life planning. “The previous approach, which has involved simply asking patients whether they have an advance directive, and then giving them a pamphlet about their legal rights — a step required by federal regulation under the Patient Self-Determination Act — has not worked and will not work,” he stresses.
The existing federal and Joint Commission standards do not go far enough, Hammes adds. “The only thing we have seen that improves care is these more sophisticated and in-depth conversations that involve the patient and their family,” he says. “We know how to do these things now, they do improve care, and I think it is what we should expect out of our health care systems — to deliver to patients as a way of making care better, and really helping families through some of the most difficult moments of their lives.”
While CMS is not expected to make a final decision about its proposal until November 1, both Hammes and Minton agree hospital administrators should now be taking stock of their existing infrastructure for end-of-life planning. “Each institution is a little bit different in how they go about this,” Minton notes. “Some have palliative care referral teams, which are great. We are seeing more and more of those. And some of this is done informally already. It is important for each institution to first assess what they do have in place, what their strengths are, and where do they need specialty training.”
Physicians, in particular, need to be informed by a team, but if they are the ones being reimbursed, they need to be prepared to step up to the plate and initiate these discussions, Minton advises. “It involves being able to look at the horizon of what the patient is going through and saying, ‘OK, this is the time when it is appropriate [to have the discussion].’ I can’t say that is an easy call, but the more you do it, you become better versed in it, and that is where mentoring becomes important,” she explains. “We are at a point of saying, ‘this is worth reimbursing. This is important. It is meant to improve outcomes, and it is meant to decrease costs.’”
Emergency medicine technicians (EMT) and paramedics are, at times, the first medical personnel on the scene of a patient who may wish to not initiate, or to discontinue, life-saving care. But he or she requires education and protocols that direct the process. Further, there may be family conflict over such decision-making, requiring much more from first-responders than what their clinical training has equipped them to provide, according to Deborah Waldrop, LMSW, PhD, a professor and the associate dean for faculty development in the School of Social Work at the University of Buffalo in Buffalo, NY, who recently led a team of researchers to explore the role of first responders in dealing with end-of-life situations.1
“Emergency calls at the end of life are intense and emotional, often engendering more need for family intervention than medical care,” notes Waldrop, who is an expert on advance care planning. “Additional education about the nature of end-of-life calls, family conflict and resolution, family emotions, and clarification of protocols between health care providers (e.g., nursing homes, hospice, and hospitals) is needed.”
Among the obstacles that first responders may encounter is the possibility of ethical challenges when they respond to a call for which there is no paperwork stipulating the patient’s wishes to forgo resuscitation, Waldrop observes. Further, she notes patients and families may not fully understand the implications of specific decisions.
“People often do not know what is involved in resuscitation and what will happen when a loved one who is dying is transported to an ED,” Waldrop says. “They just know that when they need help they will have a response in less than 10 minutes from an EMS team.”
What would also help EMTs and paramedics is more public education about legally binding documents that describe end-of-life care decisions and the need for people to engage in advance care planning before medical crises occur, Waldrop advises. Further, she suggests that all health care providers need to be brought up to speed about what the scope of practice is for prehospital providers, and what they can expect and not expect from EMT teams in the field.
Waldrop believes that the current proposal by the Centers for Medicare and Medicaid Services (CMS) to more liberally pay for advance planning sessions would help address many of these concerns.
“Currently, when conversations about end-of-life wishes do take place, they are often very near death when many important other opportunities [to discuss these matters] have been missed,” she says. “CMS payment for earlier conversations would promote the importance of talking about what is hoped for and what is realistic, helping families and providers know what to do and be as comfortable as possible with that before a medical crisis occurs.”