Advance Care Planning: Seven Steps to Maximize Effectiveness
Editor’s note: This is the second article in a multipart series about advance care planning and how to operationalize an effective program in nursing homes. Find the first article explaining the basics of what it is and why it matters here.
Advance care planning takes some time and attention to ensure it provides person-centered care to residents. Here are seven steps that directors of nursing services (DNSs) can implement to help achieve that goal:
Assess your policies and procedures
From an organizational, as well as a regulatory, standpoint, supportive and clear policies and procedures are essential to having an effective advance care planning program, says Susan Hickman, PhD, director of the Indiana University (IU) Center for Aging Research at the Regenstrief Institute in Indianapolis, IN, and professor in the IU School of Nursing. Hickman also serves as the co-principal investigator on a National Institutes of Health-funded demonstration project to implement an advance care planning program in 100 nursing homes across the country.
“Too often, there is a lack of clarity about how to manage advance directives or medical order forms like the POLST (Physician Orders for Life-Sustaining Treatment),” says Hickman. “There needs to be a clear workflow mapped out, and your staff need to understand what their part in that workflow is.”
Note: The surveyor guidance under F578 (Request/Refuse/Discontinue Treatment; Formulate Advance Directives) in Appendix PP of the State Operations Manual details the minimum standards for what should be included in a facility’s advance care planning policies and procedures.
Train the entire IDT on their specific roles
“Advance care planning is a team sport,” says Hickman. “Everyone has a role on that team. That includes the certified nursing assistants (CNAs), nursing, social services, the administrator or executive director, and the physicians and other medical providers.”
Every staff member needs training about advance care planning—not necessarily the same training—but everyone needs to understand their part in the process, says Hickman. “All staff should know what their residents’ preferences are and how that impacts their work. That requires training, including during the onboarding process and then on a regular basis, to ensure that staff understand what advance care planning documents are available in the state and how to use them correctly and consistently with the law.”
Pick a team lead
Typically, a social services staff member often is well-positioned to take the lead on advance care planning, says Hickman. “Social services staff tend to work very closely with residents and families. They can help identify the residents’ goals of care, and they can play a critical role in aligning those goals with the treatments and services that the facility provides.”
“Social services staff often are best at helping residents or their proxies take a step back and reason through what they have heard in terms of how it relates to the resident they are making a decision for,” adds Margaret Drickamer, MD, the medical director at UNC Home Hospice & Hospice Home and associate program director for education and clinical care in the Geriatric Fellowship Program at the University of North Carolina-Chapel Hill School of Medicine.
While nurses also know the residents well and often have conversations with residents and family members about goals of care, in many facilities they are stretched too thin addressing pressing clinical needs to incorporate advance care planning into their dedicated workflow, notes Hickman. “Nurses may be better suited to providing a clinical perspective about symptoms or complications associated with a resident’s medical condition, as well as in identifying significant changes from baseline that should spur the team lead to revisit the advance care planning discussion with residents and their families.”
Give the facility lead dedicated time to work
The nursing homes that most successfully prioritize advance care planning make it an explicit part of someone’s job, says Hickman. “Advance care planning takes time, and it can’t be an add-on to an already busy role. It should be given dedicated time, and you need to commit to having that staff member include it as part of their role.”
In addition to making advance care planning part of the team lead’s job, providers optimally will put in place a structure that provides accountability for program activity, suggests Hickman. “For example, you may want to do monthly assessments of progress in terms of speaking with residents about goals and identifying residents who need to have follow-up. That type of structure and attention is essential for a successful advance care planning program within a facility.”
Ensure the team lead is able to work with physicians
Sometimes the team lead and other members of the advance care planning team don’t have adequate access to physicians and other medical providers, says Hickman. “There needs to be a process in place for dialogue back and forth among the medical provider, nurses on the floor, and social services about any documentation, including medical orders, that needs to be written. In addition, the medical provider should be available to answer questions for residents and family members about prognosis and treatments.”
Input from a clinician, whether that’s the doctor, a nurse practitioner, or a physician assistant, is essential, agrees Drickamer. “What you are really asking when you ask a resident or their healthcare surrogate to make an advance care planning decision is, ‘How much are you willing to go through for what chance of what outcome?’ The clinician can provide that information and say, ‘This is what the patient would have to go through; this is the chance they would get a positive outcome; and this is the chance the outcome would be death or severely negative, such as extensive neurological damage.’”
Capacity to consent: Involve the resident as much as possible
All nursing homes must “establish, maintain, and implement written policies and procedures regarding the residents’ right to formulate an advance directive [and to] refuse medical or surgical treatment,” according to the surveyor guidance under F578 in Appendix PP of the State Operations Manual.
The F578 guidance explains that these policies and procedures must include the delineation of several key steps related to the resident’s healthcare decision-making capacity (as defined by state law):
Determining if facility staff periodically assesses the resident for decision-making capacity and invokes health care agent or representative if the resident is determined not to have decision-making capacity; [and]
Identifying the primary decision-maker (assessing the resident’s decision-making capacity and identifying or arranging for an appropriate representative for the resident assessed as unable to make relevant health care decisions).
“Many nursing home residents have good decisional capacity and can fully make their own decisions,” points out Drickamer, who authored the “Assessment of Decisional Capacity and Competency” chapter in Hazzard’s Geriatric Medicine and Gerontology, Seventh Edition. “Other residents clearly cannot make decisions or understand the consequences of decisions that are made. They have no idea.”
However, many other residents fall in between those two types, says Drickamer. “I have always strongly advocated for what is called the assent-consent model, which is borrowed from the ethics of teenagers making decisions with their adult caregivers.”
Two key scenarios using this model are as follows:
A resident is able to make a decision, but their memory isn’t strong and they don’t remember the entire conversation at a later date. “In this case, whoever will be their healthcare proxy when they can’t make decisions should be there during advance care planning conversations and agree on what the resident is saying,” says Drickamer. “The healthcare proxy will be able to carry the memory of that discussion better.”
A resident can’t fully understand but can speak up about what is giving them pain and giving them pleasure or what their opinion is. “In this case, the proxy would be the decision-maker, giving consent or not giving consent for life-sustaining treatments,” says Drickamer. “However, both the proxy and the healthcare provider should take into consideration what the resident themselves is saying in making that decision. In many cases, they have to at least agree to go along with it. It is much harder to provide care if, for example, you have to hold the patient down to put in an IV vs. if they are willing to cooperate.”
The advance care planning team also needs to understand the difference between the “then self” and the “now self,” suggests Drickamer. Consider this example: A 55-year-old person completes an advance directive. Fifteen years later at age 70, this person’s perspective has changed, and they want to change their advance directive. “As long as they retain decision-making capacity, they can revise their advance directive,” she notes.
“However, if this person becomes demented over time and can no longer fully make a decision, they don’t have the right to change their advance directive even though what gives them pleasure or pain in the moment is quite different than what did 15 years ago,” explains Drickamer. “Their ‘then self’ remains the decision-maker for their ‘now self’ unless the healthcare proxy intervenes.”
While a resident with dementia may be quite passive, they also may need, for example, to be held down just to draw blood, resulting in skin tears and other problems, adds Drickamer. “Front-line nurses and CNAs often can provide the healthcare proxy with significant insights about how a resident with dementia may react to different treatment options, explaining which treatments may be a great burden to the resident and which they may not mind at all.”
Find out what conversations the hospital had with your new admissions
Nursing homes should work with referring hospitals to find ways to learn about advance care planning conversations that occurred during the acute-care admission, suggests Drickamer. “For example, here at UNC, we have developed a hospital discharge summary that specifically will pull in any advance care planning discussions that occurred while the patient was in the hospital so that the nursing home can see exactly what we talked about with the patient and their family.”
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