Abstract:
Death brings many emotions and processes for the dying individual and his or her caregivers and significant others. Advance care planning (ACP) for death has both legal and humanistic dimensions. The legal aspects include sanctioned legal documents about medical care for people who are no longer competent to make their own decisions. Equally important is the human side—the care planning in advance for death—that allows patients to make their own decisions in advance about their medical care at the time of their death. Careful ACP supports dying individuals and their families and reduces unwanted, unnecessary, and burdensome medical interventions and needless suffering and confusion. Such planning requires significant and timely ACP conversations. Physician offices are a major site of initiating (“triggering”) and undertaking ACP conversations, which have been encouraged by CMS-identified reimbursement codes.
Advance care planning (ACP) is the process of determining in advance what a person would want for his or her medical care should the time come when the person is unable to speak for himself or herself. Although a person with decision-making capacity can change his or her care preferences at any time, people have the right to make their own medical choices in advance of such a time when they are not able to make decisions. ACP often is confused with the other major kind of advance planning for death, such as wills, trusts, and legal power of attorney documents related to financial affairs (Table 1).
The Hidden Desire and Need for ACP Conversations
Two of the biggest concerns near end of life (EOL) are “being a burden” on families(1) and the cost of care. In addition, 57% of U.S. adults said they would tell their doctors to stop treatment so they could die if they had an incurable disease and were suffering a great deal of pain, 52% said the same if they had an incurable disease and were totally dependent on another for care, and 46% if they had an incurable disease and it was hard to function in day-to-day life. A minority wanted doctors to do everything possible to save their lives.(2) It is clear that many people need ACP to avoid otherwise automatic, unwanted interventions, particularly because it is becoming increasingly possible to keep people with terminal conditions alive longer.
In 2013, 60% of people over 65 years of age had some documented EOL wishes.(3) Unfortunately, many such documents are completed without significant conversation—90% said it was important to talk to loved ones about EOL care, but only 27% had done so.(4) Similarly, 79% want to discuss EOL wishes with their physician, whereas only 7% had had such a conversation.(1) Many ACP documents also include contradictory or confusing requests.(5)
Seventy percent of those who require EOL decisions lack decision-making capacity.(6) Further, the patient’s decisional surrogates can experience guilt and doubt about their decisions,(7,8) creating emotional difficulties and ongoing complicated grief(9) (Table 2).
Several systematic reviews related to ACP conversations have been published.(10-16) ACP conversations are associated with care that is more consistent with patient preferences,(6) less fear and anxiety near EOL,(17) earlier hospice referrals for comfortable care and location,(18) and care over and beyond written advance directives.(19) Knowledge of the patient’s wishes also reduces negative emotional effects on his or her surrogates.(20)
ACP often is believed to be for dying patients. But people guess wrong about when they will die or when a catastrophe may strike that requires EOL decisions. For a young, healthy person, an ACP conversation may primarily be about what they would prefer if they were in a bad accident that left them in a permanent coma or with severe brain trauma, whereas an ACP conversation with an older adult is more likely to focus on the worsening or new onset of a serious illness. In some regions or states, patients can also complete a request for Medical/Physician Orders for Life Sustaining Treatment (MOLST/POLST) (Table 3). These are signed, specific medical orders that apply in multiple care locations, such as home, hospice, or hospital.
The Healthcare Power of Attorney as a Reporter
The assigned healthcare power of attorney (HCPOA) role can be emotional, and struggles over decisions are common. It can be helpful for the HCPOA to understand that he or she is a reporter of the person’s wishes,(21) not the decider of death. The person has already made the decision about his or her medical care—just in advance. The prior conversations and documents are to help the HCPOA report or interpret what the patient would have wanted. However, without ACP conversations, “reporting” may be an inaccurate term, and then it is more of a surrogate “decision,” with a greater likelihood of discomfort and complicated grief. It is also important to remember that no written document can foresee all possible EOL circumstances, and any decisions made should be in the context of the patient’s own overall views for his or her care and take into consideration personal, cultural, and spiritual contexts.
The General Categories of End-of-Life Preferences
EOL wishes and care can be divided into three categories: palliation, function, and longevity.(22) All of these categories include providing all care necessary to provide comfort and symptom management. In the “palliation” goal, comfort goals are primary and might include statements such as “no CPR, no 911, no hospitalization.” A “functional” goal is one where the patient hopes to balance interventions with maintaining as much function as possible, and might include statements like “treat and attempt to cure if recovery is likely, but reassess often” or “limit to less invasive and less burdensome treatments.” The functional level can include CPR or DNR preference. A “longevity” goal is one where the patient primarily wishes to prolong life by treating everything, including the use of CPR, intubation, surgery, and 911 services. This categorization of EOL care: (1) represents meaningfully different options; (2) is understandable to most people; (3) is easily measured; and (4) can be identified from a variety of different types of Advance Directives. An individual’s goals should be reassessed periodically.
Who Can Assist Individuals and Significant Others with ACP Conversations?
Many ACP conversations are needed, meaning that individuals other than palliative care specialists or physicians will need to do the bulk of this work.(23) Many physicians believe nonphysicians can facilitate ACP conversations,(24) and many ACP conversations are conducted by nonclinicians. The most common facilitators probably are physicians, nurse practitioners, physician assistants, social workers, and clergy. Most of the elements of an ACP conversation do not require much clinical content, but sometimes clinicians are needed to assist with medical information, such as the patient’s prognosis. In this situation, either the clinician becomes directly involved, or the person making the ACP could ask the clinician specific questions separate from the ACP conversations.
Identifying Routine Triggers for Advance Care Planning Conversations
Patients and their families, and even physicians, often avoid ACP conversations. Further, individuals without living wills in one study almost always said it was because no one had brought it up to them or that they felt it was too early to discuss the issue.(25) In addition, many do not know about or understand the following issues:
What types of choices may be needed near life’s end;
That they are unlikely to be able to make their own decisions;
That a power of attorney is not the same as an HCPOA;
That loved ones may face specific types of difficulty when decisions need made near or after death; or
That conversations sometimes need to be made or processed emotionally over a period of time.
Natural triggers for ACP conversations arise when someone close to an individual dies or after a funeral. Hospitalizations or new serious diagnoses (such as cancer) also often prompt ACP conversations. Other triggers can include movies, wars, new babies, or similar stimuli. However, waiting for one of these common triggers means ACP often does not take place as early as it should.
Why Physician Offices
Getting ACP conversations triggered in medical offices makes sense, because most chronically ill people with significant risk of near-term death are seen regularly by clinicians. Clinicians also have more knowledge of medical illnesses and prognoses. Furthermore, primary care physicians report that most days they see patients over the age of 65 who are very likely to die within the year. Most felt it was very important to have these ACP conversations with patients, and most also reported having at least some degree of ACP conversation with patients every week in the office. They were also in favor of Medicare coverage for ACP conversations, yet few had billed for the service.(26)
Clinicians often struggle to initiate timely ACP discussions. Patients may interpret a mention of ACP as a suggestion that they are going to die soon. Some patients never get around to bringing their significant other/HCPOA for a joint conversation. Yet patients do want their doctors to discuss end-of-life issues with them.(27)
The sidebar “Five Wishes” provides a sample discussion guide for patients called Five Wishes (a sixth wish was added later by the creators of the list).
Creating Triggers for ACP Conversations in the Office
Given the general reluctance to raise the issue, it is helpful for clinicians to have systematized triggers for ACP that are a part of office routine, such that patients understand that ACP is one element of routine healthcare. These triggers can include a routine inquiry on adult patient visit intake forms, the Medicare Annual Wellness visit, and other annual wellness visits, or when a patient becomes eligible for long-term in-home nursing care.
Some simple process rules also can identify patients most in need of ACP conversations. Individuals meeting the definition of serious illness with high mortality (i.e., “one or more conditions become serious enough that general health and functioning begin to decline with little chance of recovery, a process that continues until EOL”) have life expectancy of two years or less.(28) This would include individuals with a declining functional score (e.g., the Karnofsky Score(29)), one or more functional impairments (by Activities of Daily Living status), multiple chronic illnesses, and age greater than 65 years. In addition, unintentional weight loss, spontaneous patient mentions of EOL, and recent hospitalizations or emergency department visits also add urgency to ACP discussions.
Information for Patients and Families
Having a packet of information and forms on hand for patients can be extremely helpful, and should include any state-specific forms or information. Short introductory pamphlets are commonly kept in waiting rooms or with other patient education material. Invitations for individuals over 65 to a group visit(30) or general patient education sessions also can provide information and set the stage for more specific ACP visits and conversations.
Billing for Advance Care Planning Conversations with the Patient: the Missed Opportunity
Two specific CPT codes for ACP services went into effect in January 2016.(31) One covers the visit with the patient, and a second applies if additional time is required:
99497: Work relative value unit (RVU) = 2.40. “Advance care planning including the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified health professional; first 30 minutes, face-to-face with the patient, family member(s) and/or surrogate.”
99498: Work RVU = 2.09. “Advance care planning including the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified health professional; each additional 30 minutes.” This would be listed separately with a -25 modifier in addition to the primary code of 99497 for non-prevention visits, or with -33 modifier for the Medicare Annual Wellness Visit.
If the criteria for the initial 99497 are not reached, the clinician can consider billing with a pertinent CPT E/M code. Annual ACP conversations would be considered reasonable for most Medicare patients. There are no specific limits on the frequency of billing these codes, but pertinent changes in health status would be expected if they were completed frequently.
There are no limitations for:
Place of service (i.e., office, home, hospital, nursing home, hospice);
Clinician specialty; or
Specific training background of the individual in a team-based approach with clinicians (this may be limited by state law, however). In this case “incident to” provisions apply.
Documentation requirements vary by the specific Medicare Administrative Contractor, but would, at minimum, be an account of the voluntary nature of the conversation, explanations of ACP, any form completion, who was present, and the time spent face-to-face.
99497 and 99498 can be billed in addition to E/M services, but not on the same date of service as some specific critical care services.
Pertinent coding diagnoses could be “administrative examination” or a serious diagnosis the patient has recently received.
The usual Part B deductible and coinsurance applies except when ACP is furnished as an optional element of the CMS Annual Wellness Visit.(31)
Several of the best known and proven programs designed to encourage and support ACP are presented in the sidebar on resources.
Quality Measurement
The National Quality Forum briefly describes an ACP-related quality measure as “the percentage of patients aged 65 years and older who have an advance care plan or surrogate decision maker documented in the medical record or documentation in the medical record that an advance care plan was discussed but the patient did not wish or was not able to name a surrogate decision maker or provide an advance care plan.”(32)
Conclusion
ACP is a patient-centered activity that improves outcomes. It is a duty for physicians to both undertake and encourage ACP. Some ACP activities can be reimbursed. Yet physicians are not routinely taking advantage of this, in spite of many conversations they have with patients regularly, indicating many missed opportunities. Multiple available resources support efforts in medical offices.
References
Final chapter: Californians’ attitudes and experiences with death and dying. California HealthCare Foundation. February 2012. www.chcf.org/publications/2012/02/final-chapter-death-dying . Accessed June 15, 2017.
Pew Research Center. Views on end-of-life medical treatments. Growing minority of Americans say doctors should do everything possible to keep patients alive. PewResearchCenter, November 21, 2013. www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/ . Accessed June 15, 2017.
Griffin S, Cubanski J, Neuman T, et al. Medicare and end-of-life care. JAMA. 2016; 316:1754. https://jamanetwork.com/journals/jama/fullarticle/2576570 .
The Conversation Project National Survey 2013. http://theconversationproject.org/ . Accessed June 15, 2017.
Clemency B, Cordes CC, Lindstrom HA, Basior JM, Waldrop DP. Decisions by default: incomplete and contradictory MOLST in emergency care. JAMDA. 2017;18(1):35-39.
Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211-1218.
Chiarchiaro J, Buddadhumaruk P, Arnold RM, White DB. Prior advance care planning is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac Soc. 2015;12:1528-1533.
Tilden VP, Tolle SW, Nelson CA, Fields J. Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nursing Research. 2001;50(2):105-115.
Song MK, Ward SE, Fine JP, et al. Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates. Am J Kidney Dis. 2015;66:813-822.
Oczkowski SJ, Chung HO, Hanvey L, Mbuagbaw L, You JJ. Communication tools for end-of-life decision-making in ambulatory care settings: a systematic review and meta-analysis. PLoS One. 2016;11(4):e0150671. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0150671 .
Bernacki RE, Block SD, American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994-2003.
Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28:1000-1025.
Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15:477-489.
Auriemma CL, Nguyen CA, Bronheim R, et al. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med. 2014;174:1085-1092.
Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008;148:147-159.
Meeker MA, Jezewski MA. Family decision making at end of life. Palliat Support Care. 2005;3:131-142.
Butler M, Ratner E, McCreedy E, Shippee N, Kane RL. Less fear and anxiety. AHRQ Decision Aids for Advance Care Planning. Prepared by: Minnesota Evidence-based Practice Center, Minneapolis MN. AHRQ Publication No. 14-EHC039-EF, July 2014.
Bischoff KA, Sudore R, Miao Y, Boscardin WJ, Smith AK. Early hospice referrals: advance care planning and the quality of end-of-life care among older adults. J Am Geriatr Soc. 2013; 61:209-214.
Wallace CL. Family communication and decision making at the end of life: a literature review. Palliat Support Care. 2015;13:815-825.
Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.
Braun U, Naik AD, McCullough LB. Reconceptualizing the experience of surrogate decision making: reports vs genuine decisions. Ann Fam Med. 2009;7:249-253.
Schamp R, Tenkku L. Managed death in a PACE: pathways in present and advance directives. J Am Med Dir Assoc. 2006;7:339-344.
Kirchhoff KT, Hammes BJ, Kehl KA, Briggs LA, Brown RL. Effect of a disease-specific advance care planning intervention on end-of-life care. J Am Geriatr Soc. 2012;60(5):946-950.
Arnett K, Sudore RL, Nowels D, Feng CX, Levy CR, Lum HD. Advance care planning: understanding clinical routines and experiences of interprofessional team members in diverse health care settings. Am J Hosp Palliat Care. 2016 Jan 1:1049909116666358. doi: 10.1177/1049909116666358. [Epub ahead of print]
Phipps E, Harris D, Braitman LE, Tester W, Madison-Thompson N, True G. Who enrolls in observational end of life research? Report from the cultural variations in approaches to end of life study. J Palliat Med. 2005;8(1):115-120.
DiJulio B, Firth J, Brodie M. Kaiser Health Tracking Poll: September 2015. Kaiser Family Foundation. http://files.kff.org/attachment/topline-methodology-kaiser-health-tracking-poll-september-2015 . Accessed June 15, 2017.
Physicians’ views toward advance care planning and end-of-life care. Perry Undem Research/Communication. April 2016. www.johnahartford.org/images/uploads/resources/ConversationStopper_Poll_Memo.pdf . Accessed June 15, 2017.
C-Tac: Coalition to Transform Advanced Care. The Advanced Care Project. www.thectac.org/wp-content/uploads/2015/06/ACP-Report-6-18-15-FINAL.pdf . Accessed June 15, 2017.
Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH. The use of the nitrogen mustards in the palliative treatment of carcinoma. With particular reference to bronchogenic carcinoma. Cancer. 1948;1:634-656.
Lum HD, Jones J, Matlock DD, et al. Advance care planning meets group medical visits: the feasibility of promoting conversations. Ann Fam Med. March/April 2016;14(2):125-132.
Department of Health and Human Services, Centers for Medicare and Medicaid Services. Advance care planning (ACP) as an optional element of an annual wellness visit (AWV). www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNMattersArticles/downloads/MM9271.pdf . Accessed June 15, 2017.
Building additional serious illness measures into Medicare programs. Discern Health. March 14, 2017. http://discernhealth.com/building-additional-serious-illness-measures-into-medicare-programs/ . Accessed June 15, 2017.
Five Wishes: A Living Will Written in Plain Language
Who will make decisions for you when you can’t? (Medical/Healthcare Power of Attorney)
What kind of medical treatment do you want or not want?
Is hospice care an option?
How important is comfort?
How do you want to be treated?
What do you want your loved ones to know?
Note that Five Wishes is not a legal document in many states. Also note that a sixth wish was added later by the creators of the list.
Source: Aging With Dignity. Five wishes. www.agingwithdignity.org/five-wishes.org/.
Resources for Advance Care Planning
The Federal Framework for ACP: 1991 U.S. Patient Self-Determination Act (PSDA)
Sample Starter Conversations
The Five Wishes: www.agingwithdignity.org/
Institute for Healthcare Improvement. The Conversation Project: www.theconversationproject.org/ in collaboration with
National Information Sources
Centers for Disease Control and Prevention:
Give Peace of Mind: Advance Care Planning: www.cdc.gov/aging/advancecareplanning/
Advance Care Planning: An Introduction for Public Health and Aging Services Professionals: www.cdc.gov/aging/advancecareplanning/care-planning-course.htm
Agency for Healthcare Research and Quality Effective Health Care Program:
Butler M, Ratner E, McCreedy E, Shippee N, Kane RL. Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med. 2014;161:408-418. http://annals.org/aim/article/1891307/decision-aids-advance-care-planning-overview-state-science
National POLST Paradigm
About the National POLST Paradigm: http://polst.org/about-the-national-polst-paradigm/
American College of Physicians
Advance Care Planning: Implementation for Practices: www.acponline.org/system/files/documents/practice-resources/business-resources/payment/medicare/advance_care_planning_toolkit.pdf
CMS Billing
Frequently Asked Questions About Billing the Physician Fee Schedule for Advance Care Planning Services: www.cms.gov/medicare/medicare-fee-for-service-payment/physicianfeesched/downloads/faq-advance-care-planning.pdf
Department of Health and Human Services. Advance Care Planning (ACP) as an Optional Element of an Annual Wellness Visit (AWV): www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNMattersArticles/downloads/MM9271.pdf
American Academy of Family Physicians. Advance Care Planning: www.aafp.org/practice-management/payment/coding/acp.html. This source includes specific information on reimbursement of advance care planning by the top five insurance payers.
Quality Measurement
Building Additional Serious Illness Measures into Medicare Programs, March 14, 2017: http://discernhealth.com/building-additional-serious-illness-measures-into-medicare-programs/ .
Examples of Significant Programs That Can be Implemented in an Organization or Community
Serious Illness Conversation Guide: https://www.ariadnelabs.org/areas-of-work/serious-illness-care/resources/
Respecting Choices: http://www.gundersenhealth.org/respecting-choices
Coalition for Compassionate Care of California: Customizing Medical Decision-Making Discussions for Healthcare Organizations: http://coalitionccc.org/what-we-do/advance-care-planning/
Topics
Quality Improvement
Healthcare Process
Trust and Respect
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