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Tip Sheet: Advance Care Planning Discussions: a Step-by-Step Guide with Verbal Options
Meeting with a long-term care resident, family, or both is an important step to clarify and plan for a resident’s future care. However, due to the sensitive nature of the meeting’s purpose, conducting such a meeting can be a difficult task. Being able to guide residents and their families through advance care planning conversations is an essential competency for any long-term care physician as well as for nurse practitioners, social workers and nurses working with older adults. In the Tip Sheet accompanying this article, the author presents a succinct and detailed step-by-step guide to advance care-planning discussions to facilitate more frequent and more effective advance care planning dialogues. The authors also provide specific suggestions for phrasing questions and transitions between topics.
Key words: care planning, quality of like, Alzheimer’s disease, dementia, palliative care
An important event in the provision of long-term care is meeting with the resident, with or without their family, to map out plans for their future care. This is most important for residents with less than 1–2 years of life expectancy. Such discussions may focus on single interventions (eg, hospitalization) or on the overall approach to care. Despite much effort to reduce suffering at the end of life, a recent study found a 12% increase over the past few years in reported pain, depression and confusion at the end of life1. Because many residents and families often feel as though they must continue to pursue all available healthcare options up until the end of life, despite the demonstrated value of early palliative care, it is important to begin these discussions earlier rather than later. However, discussions surrounding end of life care are often extremely emotional, difficult, and taxing for all involved. As it deals with death, it may be the most intense conversation a provider has with a patient. Providers may feel inadequate and stressed, perhaps even avoiding a meeting. Historically, providers are poorly trained to conduct such meetings.
An excellent recent review2 details the “low risk, high value” merits of having advance planning discussions with residents, and it provides several specific instructions for conducting meetings in order to have these discussions, including example dialogue and communication tips. Others have also outlined general ingredients that should be included in advance care planning conversations3,4. The most detailed and practical information has come from The Center to Advance Palliative Care5. Combining information from these resources with the author’s personal experience, a detailed yet succinct step-by-step guide to conducting advance care planning meetings is presented in the accompanying Tip Sheet. This resource is intended for use by the nurse, social worker, physician or nurse practitioner who conducts the meeting or by an educator instructing practitioners on the competency of conducting advance care planning conversations.
Considerations for Using This Tip Sheet
On-line exercises and education are available for patients that walk one through the advance directive process, including goals and values (eg, www.theconversationproject.org; www.caringinfo.org; www.compassionandsupport.org; www.prepareforyourcare.org). Residents and their family members can be directed to these resources in advance of the meeting. It may be helpful to prepare a pre-meeting questionnaire and have the resident or family member complete it before the meeting. Some examples of pre-meeting questions are listed in Figure 1.
The Tip Sheet can be brought into the advance care-planning meeting, and it could be mentioned that it will be referred to throughout the meeting so as not to forget important items. Referring to the guide during the discussion may be helpful as it brings another “authority” into the room, conveys a sense that the questions are routine perhaps softening difficult subjects such as false hope.
Not all meetings will include all steps, but the final steps should not happen until the previous ones have been covered. A step may be skipped if it has already been discussed or an understanding on the particular point has been already established. However, it may still be helpful to briefly summarize your understanding and verify before moving on to the next step. Often, more than one meeting will be necessary in order to complete the advance care planning process.
Many of the verbal options are questions that can be ‘put on the table’ by the clinician and then answered by the most appropriate person. It is not intended that every verbal option be used in a given meeting. Most of the wording included in the examples provided in the Tip Sheet is directed to a resident who has decision-making capacity. If this is not the case, rewording may be necessary; for example, “you” should be replaced with the name of the resident being discussed, and the person making decisions on behalf of the resident could be asked, “How would [resident’s name] answer this question?” Wisdom must be applied to decide which versions of each question are appropriate.
Taking the emotional “pulse” is such an important step that it is repeated. Showing empathy cannot be overstated. On the other hand, it is important that the leader convey a sense of control and expertise, providing evidence-based information in an understandable way. One model of conducting these meetings involves two leaders, such as a physician (for information) and a social worker (for emotional support).
Education is a key ingredient inserted several times into the meeting dialogue, as misunderstanding or lack of information is common. For example, one study of end-stage cancer patients revealed that many believed that available treatments could be curative.6
One of the most important “treatments” to consider for many nursing home residents is hospitalization. Deciding for or against a do-not-hospitalize order may be the primary or sole purpose for a meeting. The American Medical Director’s Association Choosing Wisely initiative signals hospitalization as an often-unwise intervention towards the end of life.
Documentation of the results of the session should be done. This may include completion of any forms (often state or facility-specific); eg, DNR, Basic Living Will, and MOLST. A chart note is necessary, with inclusion of specific decisions not included on other forms. It is important that steps be taken to flag this information if not entered in a designated advance directive section. Items needing an order (eg, “no hospitalization”) should be accordingly entered in orders. Ensure that the patient/family understand that this will be done. A 1-page “Future Care Plan” form has also been provided (Figure 2) that can be used in the LTC setting to document the results of many of these discussions. This can be used in addition to any other Living Will directions. This is updated periodically and reviewed and modified as appropriate at the time of a listed decision with the proxy.
Discussion
This guide has mostly been used as an educational tool in the role of medical director for nursing home nurses and social workers, and as faculty for family physician residents and geriatric fellows, both for simulated exercises and actual patient/family encounters. Simulations for residents and fellows using the guide have included recruitment of program staff and other residents to role-play interactions with residents and family members with prescribed scenarios and scripts, followed by a debriefing discussion with all involved. When used in real meetings, the Tip Sheet has been reviewed beforehand with the meeting leader with consideration of what steps need most emphasis.
Formal measurement of outcomes has been limited to resident evaluations of presentations of the guide incorporating practice simulations. A large majority has indicated they would likely use the guide in the future. Otherwise, informal verbal feedback has invariably been very positive, with appreciation for the guide’s practicality and its help in removing barriers to completing these meetings.
Several cautions with using this guide are advised. A mechanical check-off implementation should be avoided. The foundation of the conversation must be patient- and family-centered relational communication, laced with dignity and respect. Others have emphasized the importance of knowing the person, providing ample participation and choice, ascertaining the meaning behind words and behaviors, establishing a trusting relationship, attention to affect, instilling hope and working with uncertainty.7,8 Having a template for the basic agenda and verbal options should free the provider to pay attention to these essential ingredients.
Striving to get everything settled and “right” should also be avoided. It takes time for patients and families to sort through these life and death issues, which are usually tainted with uncertainties. Pleas have been made to go beyond the traditional approach (on which this guide is based) to loosely defined dignity and relationship-driven goals.9,10 Realize previous advance directives such as living will documents have to be interpreted carefully with an appreciation that minds can change and that strict application to a current specific situation may not have been intended.
It must be appreciated that it will often be unrealistic or imprudent to cover all steps in one session. This effort is an on-going process with the need of periodic revisions. Including discussions, even if brief, about values, the understanding of illness, treatment options and prognosis can be invaluable. Others have stressed the importance of patient and family preparation for in-the-moment decision-making (with several suggested verbal options), of understanding that advance care planning is a process over time, and of establishing some flexibility for the surrogate if certain directives can’t be met.11 One big advantage of the LTC setting is the frequent provider presence, allowing several encounters over a relatively short time frame.
A deterrent for physicians in initiating these discussions is a perceived lack of financial reimbursement for the time. Billing by time based on education and counseling will cover much. 35 minutes can be justified with the 99313 code. Alternatively, when fully implemented, the new “advanced care planning services” billing option can be used. Professionalism should carry the rest. Consultation with a coder may be helpful.
CONCLUSIONS
Working with patients and families to plot out a future care plan that respects reality, patient preference, and dignity is formidable. For those not experienced in this task, using this guide and other suggestions should remove some of the hesitation to launch into this extremely important endeavor.
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