- Email: [email protected]
Advance Care Planning in Long-Term Care Facilities
MEDICAL MANAGEMENT
Advance Care Planning in Long-Term Care Facilities Michael D. Cantor, MD, JD, and Robert A. Pearlman, MD, MPH Residents of long-term care facilities are at risk of serious medical illnesses and being unable to express choices when difficult treatment decisions must be made. Advance care planning (ACP) allows residents to consider, make, and communicate their preferences for how medical decisions should be made if they are unable to participate in the decision-making process. This article reviews the three steps in ACP: consideration of options and expression of values, communication of decisions, and documentation of the choices.
The article defines and describes the particular value of ACP in long-term care facilities, reviews the literature on successful ACP programs in long-term care, and concludes with practical suggestions on how to develop and implement ACP programs. (J Am Med Dir Assoc 2003; 4: 101–107)
Provision of care to the frail older residents of long-term care facilities must be tailored to meet their goals. Unfortunately, residents do not always get the amount and type of care they prefer.1–3 Fortunately, advance care planning (ACP), the process of exploring and communicating values and treatment preferences in advance of when decisions need to be made, can increase the likelihood that residents will get the care they want and need. If ACP is to succeed, it requires facility and staff commitment to the development and implementation of policies and programs supporting this complex process. Why should long-term care facilities implement ACP programs? First, without ACP it is not possible to know what choices a resident and family would make, or what underlying values should drive future decision making. Second, residents do not lose the right to make their own choices, or to have surrogates speak on their behalf, when they enter nursing homes.4 Facilities are ethically obligated to ensure that resi-
dents are empowered to make healthcare decisions. ACP may save time, effort, and resources.5 Attempting to make critical healthcare decisions that have not been previously discussed or considered can be much more time consuming and difficult than having discussions in advance and creating clear care plans. At the minimum, ACP allows conflicts to be identified early and hopefully resolved in a timely fashion. Third, there are legal and regulatory requirements such as the Patient Self Determination Act discussed later in this paper, that affect the use of advance directives.6,7 ACP will not work for every resident. Some residents lack decisional capacity and cannot participate in the process. Others do not have anyone who could act as a surrogate. Some residents come from cultural backgrounds that emphasize communal or family decision making or that view discussion of future illness as taboo; and others are unwilling or unable to consider or discuss death and dying.8 Even with these limitations, ACP offers the hope of such significant benefits for residents of long-term care facilities that it is critical for every facility to have a comprehensive ACP program. This article will provide practical information for long-term care practitioners and administrators who are responsible for creating and implementing facility ACP programs. It will characterize the process of ACP, define the role of advance directives in ACP, review the literature on ACP in long-term care, and conclude with practical suggestions on how to integrate ACP into long-term care settings.
Geriatric Research, Education, and Clinical Center (182) Veterans Affairs Boston Health Care System—Jamaica Plain Campus, Jamaica Plain, Massachusetts (M.D.C.), and the National Center for Ethics in Health Care of the Veterans Health Administration, Veterans Affairs Puget Sound Health Care System, University of Washington School of Medicine Department of Medicine, Division of Gerontology and Geriatric Medicine (S-182-GRECC), Seattle, Washington (R.A.P.). The opinions expressed in this paper do not necessarily reflect those of the Department of Veterans Affairs or the United States Government. Address correspondence to Michael D. Cantor, MD, JD, Geriatric Research, Education, and Clinical Center (182) Building 9, 3rd floor, VA Boston Health Care System—Jamaica Plain Campus, 150 South Huntington Ave., Jamaica Plain, MA 02130. E-mail: [email protected].
Copyright ©2003 American Medical Directors Association DOI: 10.1097/01.JAM.0000052563.45932.FC MEDICAL MANAGEMENT
Keywords: advance care planning; long term care; advance directives
DEFINING ADVANCE CARE PLANNING ACP is a three-part process involving consideration of options and expression of values, communication of decisions, Cantor and Pearlman 101
and documentation of the choices made. Ensuring that each part of this process occurs requires addressing barriers to successful ACP in nursing homes and implementing methods to increase the quality of the ACP process. The first part of the ACP process requires the long-term care resident and family to consider and make decisions regarding future healthcare choices. The person needs to consider how they would want medical decisions to be made as well as the content of the decisions. A resident may decide that a surrogate may make the decisions, that the care team should have discretion in making decisions, or some combination of these options. The resident may choose to offer specific guidance about the values that should guide decision making, or leave it up to the discretion of the surrogates and clinicians to decide what is best under the circumstances. Alternatively, the resident may make specific treatment choices, such as not to be hospitalized, or not to be fed through a feeding tube. Gaining insight into a resident’s goals for care may provide a useful framework for determining which treatments are acceptable and which should be avoided. Several studies demonstrate that it is possible for older people to make treatment choices and appoint surrogates. The work of Patrick et al. demonstrates that people are capable of determining what, if any, health states are worse than death, and that when a health state is worse than death, they choose to limit treatments that are likely to result in the patient surviving in one of those health states.9,10 Gillick and colleagues showed that residents of a long-term care facility are capable of determining and expressing goals of care, and choosing treatments that reflect their preferences to limit care in certain situations.11 Studies of the selection of surrogates by Mezey et al. demonstrate that even residents with advanced dementia and Mini-Mental Status scores of less than 10 (normal range 25–30) are frequently able to comprehend the meaning of surrogate selection and can appoint someone to make decisions for them.12 Completing the difficult and emotionally challenging task of considering treatment preferences and choosing a surrogate is only the first part of ACP. The second part of the process is communicating the choices and values determined during the first stage. The literature shows that even when patients go through the effort of appointing a surrogate, surrogates are often unprepared, do not make treatment choices that are consistent with patient preferences,13–16 and sometimes feel guilt and emotional distress from the burden of decision making.17 Successful ACP utilizes tools that increase the likelihood that meaningful communication will occur. ACP discussions may be more successful when facilitated by a healthcare professional. The availability of social workers, case managers, and nurses in long-term care facilities makes it easier for facilitation to occur. Physicians must be kept informed of advance care plans and should be involved as much as possible, but the primary responsibility for leading patients and families through discussions of values and treatment choices may rest on non-physician providers.18 The second stage of the ACP process, communication of preferences, also offers a valuable opportunity for nursing home residents, families, and staff to discuss future care. This can be especially important when there is a court-appointed guardian 102 Cantor and Pearlman
or when an ombudsman is involved. These conversations can help residents and staff prepare for advancing chronic illness or sudden onset of new health problems. This is also an opportunity for important discussions between the resident and family members who will be making healthcare decisions if the resident is unable to do so. The long-term care facility provides a context for discussions that can occur over time, in an environment that provides support and permits decisions and understanding to evolve over time. This fits well into an approach to end-of-life conversations that permits people to approach death prepared for the many decisions that dying brings.19 These conversations can also encourage discussion of the need for palliative care and hospice, both of which are inadequately provided in many long-term care facilities.20 –22 The third step in the ACP process is to document the person’s preferences. Advance directives (ADs) are often used to document preferences, but are only a part of this critical step. Documentation usually includes writing down the person’s choices of surrogate, desired treatments, values, and preferences for how much latitude the surrogate and physicians should have in determining what is best for the patient. This information needs to be available in a place where it can be located when needed. For example, documentation of out-of-hospital “do not resuscitate” (DNR) orders permitting residents to be DNR when being transported between care settings is important information for the caretaker to know. Long-term care facilities have the advantage of permanent charts that can be designed to include a place for documentation of ACP discussions as well as advance directives forms. ROLE OF ADVANCE DIRECTIVES IN ADVANCE CARE PLANNING Advance directives (ADs) are important tools for ACP, but do not ensure that patient’s preferences will be known or respected if the person loses the capacity to make decisions. Advance directives fail to ensure that wishes are expressed and respected for several reasons. First, the documents are imprecise, vague, and static. Second, logistical problems often prevent ADs from being recognized or available when needed. Third, providers lack understanding of how ADs work and when they are effective. Finally, some physicians will trump wishes expressed by the AD document or the patient’s surrogate when they feel that it is in the patient’s best interests to do so.23 AD documents are often unable to clearly guide clinical decision makers. There are two major types of advance directives. The first type, called “instructional directives,” allows patients to document treatment preferences. Living wills are the most common type of instructional directive. They typically contain language that instructs the treatment team to withhold life-sustaining treatments if the patient is terminally ill and unable to express treatment choices and the treatment merely prolongs dying. Variations of the living will include the medical directive,24 a document that lists various illness scenarios and allows patients to check boxes that indicate what types of treatments they would choose in the various scenarios. Surrogate or proxy directives allow a person to appoint someone to act as their spokesperson if the person loses decisional capacity or the ability to express treatment choices. JAMDA – March/April 2003
State laws determine the specifics of advance directives. For example, some states, such as Massachusetts, do not recognize living wills. There are also many smaller variations, such as limitations on the powers of the surrogate, and the name used for surrogate directives, such as a “durable power of attorney for health care,” or a “healthcare proxy.”25 Long-term care facilities should seek guidance from legal counsel and state regulatory agencies regarding the specifics of advance directives in their state. Advance directives have many important limitations that prevent them from achieving the ultimate goal of ensuring that patients are able to clearly express their values and treatment preferences. Living wills have limited applicability, in that they often do not say what to do in specific circumstances. The descriptions and information about treatment preferences are often so sketchy that they are difficult to interpret—especially when the circumstances do not match whatever is identified in the AD. The risk of clinicians drawing wrong conclusions is so great that one end-of-life care expert has declared that she would never create a living will.26 Moreover, preferences may be determined by misguided beliefs such as a false causal link between two events that are temporally related (eg, being on a ventilator and dying, or being on a ventilator and having pain). Studies demonstrate that patients often prefer that family members make decisions based on their judgment of what is best rather than relying on written directives.27,28 Surrogate directives have the advantage of appointing a person who can speak on behalf of the patient, but surrogates often are unsure of what a patient would choose13–16 and have difficulty making decisions to limit care.17 Values histories are sometimes used in addition to advance directives, because they allow patients to express important values rather than focusing on choosing specific treatments to
accept or reject.29 However, values histories have been shown to have a limited relationship to treatment preferences.29 Also, values histories suffer from the same vagueness and static nature as advance directives. The problems that prevent advance directives from ensuring that residents’ preferences are respected are compounded by a variety of other problems, including that they are often unavailable when needed,30,31 and that clinicians may trump choices expressed by surrogates.32 The Study to Understand Prognoses and Preferences and Risks of Treatment (SUPPORT), the largest study of end-of-life decision making conducted in the United States, found that advance directives may have little impact on the process of medical decision making for terminally-ill hospitalized patients.33–35 Despite the problems with advance directives as ACP tools, legal and regulatory systems emphasize their importance. The Patient Self-Determination Act (PSDA)6 requires that all residents admitted to long-term care facilities be offered information about their right to make advance care directives. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) accreditation standards also require that patients be asked whether they have advance directives at admission, and that they be offered the opportunity to make advance directives.7 The literature shows that the PSDA has led to an increase in the number of nursing home residents with documented advance directives,36 –38 but that in other settings, it has not had as much of an impact on the prevalence of advance directives.39 A growing literature on ACP in long-term care suggests that even though advance directives are not sufficient to ensure successful ACP, programs of comprehensive ACP can make a difference in the types of care that residents receive.
Table 1. Physician Orders for Life-Sustaining Treatment (POLST) Questions and Options* Topic
Question
Choices
Resuscitation
If your heart stops beating and you are not breathing, do you want cardiopulmonary resuscitation?
● Resuscitate ● Do Not Resuscitate (DNR)
Medical Interventions
What level of medical services would you want if you were to get ill?
● ● ● ●
Antibiotics
What level of antibiotics do you want if you have an infection?
● Full Treatment ● No invasive (IM/IV) antibiotics ● No antibiotics except if needed for comfort
Artificially Administered Fluids and Nutrition
If you cannot take fluids by mouth, would you want to receive fluids and nutrition artificially?
● Full treatment ● No long term feeding or IV fluids ● No feeding tube/IV fluids
Full Treatment/Resuscitation Advanced Interventions Limited Interventions Comfort Measures Only
* Adapted from the Physicians Orders for Life Sustaining Treatment (POLST) Form, Dunn PM, Schmidt TA, Carley MM, Donius M, Weinstein MA, Dull VT. A method to communicate patient preferences about medically indicated life-sustaining treatment in the out-of-hospital setting. J Am Geriatr Soc 1996;44:785–791. MEDICAL MANAGEMENT
Cantor and Pearlman 103
SPECIAL APPROACHES TO ADVANCE CARE PLANNING IN LONG-TERM CARE In contrast with other settings, ACP processes that are tailored to fit the special needs of long-term care residents can help determine the type of care provided. The most successful processes usually standardize the process to some extent, and use common policies, forms, and communication strategies to ensure that preferences are thoroughly discussed, communicated, and documented. We will briefly review a few of the more important studies of ACP strategies in long-term care. The Physician Orders for Life Sustaining Treatment (POLST) program has demonstrated that use of a standardized form can ensure that long-term care patients have their choices about resuscitation and hospitalization respected.40 Developed and implemented by a coalition of healthcare institutions in Oregon, the POLST program centers on using a form that offers residents four basic treatment choices: resuscitation status, use of antibiotics, use of artificial nutrition and hydration, and hospitalization (Table 1). One of the major advantages of the POLST form is that it is actually a physician order form. Unlike advance directives, POLST forms do not have to be interpreted—their instructions are clear, and they determine the treatments that are given or
withheld. One study of the POLST form demonstrated that residents who had DNR orders had their wishes respected 100% of the time, and that only 2% of the time were do not hospitalize orders in the POLST form overridden for the purpose of extending life.40 As the commentators on POLST have noted, the intervention consisted of more than completing a form.41,42 The process of developing the POLST system included creating a coalition of long-term care facilities, hospitals, and emergency medical systems to develop common policies and educational interventions. Clinicians, administrators and residents were all involved in ensuring that the proper conditions existed for POLST to work. A similar approach to ACP has been used in some Veterans Administration (VA) long-term care facilities. The Bedford, Massachusetts, long-term care facility has used an approach called “advance proxy planning” in its dementia care unit for more than 10 years.43 Advance proxy planning requires proxies to have discussions regarding care for residents with dementia in advance of the time that the decisions have to be made. A form similar to the POLST is used to structure discussions with the surrogates of the residents and to ask them about use of antibiotics, use of medical nutrition and hydration, and hospitalization. Surrogates are sometimes the
Table 2. Barriers to Advance Care Planning and Strategies to Overcome Them Barriers
Strategies for Medical Directors
Resident, family and staff difficulty thinking and talking about death and dying
● Educational materials for patients and families ● Education of staff about advance care, planning tools and strategies ● Policies requiring advance care, planning discussions ● Practice
Advance directives focus on treatment choices rather than resident and family concerns
● Address resident and family concerns before discussing treatments ● Discuss resident health state preferences, then assess treatment choice consistency
Cognitively impaired residents not capable of participating in advance care planning
● Assess resident for capacity to appoint surrogate ● Work with surrogate to develop advance proxy planning decisions
Differing experience and understanding of life-sustaining treatment
● Careful discussion of resident fears and concerns ● Work to create shared understanding of current health state and likely challenges in the future
Documentation not available when needed
● Standardize forms and documents used in advance care planning ● Create location in patient charts where documents and progress notes related to advance care planning can be located ● Send advance care planning documentation when resident transferred to other settings
Lack of time to discuss advance care planning
● Require discussion of resuscitation status within 48 hours of admission ● Include advance care planning in regular resident/ family/team care planning meetings ● Periodically discuss advance care planning at regular intervals or when condition changes
104 Cantor and Pearlman
JAMDA – March/April 2003
person named in advance directive documents, but are often the next of kin or person who is authorized to make the decision. By having the discussion before the crisis emerges, some of the anxiety and stress of end-of-life decision-making can be alleviated. The Veterans Health Administration’s (VHA’s) National Ethics Committee recently issued a report recommending that VA long-term care facilities consider using ACP with their residents.44 A slightly different approach was used by Molloy et al. in their program of ACP for long-term care residents in Ontario, Canada.45 The “Let Me Decide” directive planning document permitted selection of a proxy as well as allowing residents to choose levels of care for life-threatening illness (intensive to palliative), nutrition, and resuscitation status. Facilitators were trained to use the document to guide residents and families through discussions about treatment preferences. The study demonstrated that residents in facilities that implemented this approach were less likely to be hospitalized, and that the costs of care were reduced. Despite this, family satisfaction with care was not significantly different than in facilities where residents received routine ACP. The other major study that demonstrated successful ACP is the LaCrosse Advance Directives Study (LADS).46 LADS demonstrated that in the midwestern community of LaCrosse, Wisconsin, it was possible to improve the use of advance directives and the ACP process. The study demonstrated that 85% of people who died during the year-long study period had advance directives, and that the wishes expressed in the documents were followed more than 90% of the time. This was achieved after a 5-year effort that involved all local hospitals and long-term care facilities agreeing to use the same ACP process that included facilitation of ACP discussions as well as shared policies, documents, and even posters announcing the availability of the program. Even though the program was aimed at the entire community, its impact on long-term care facilities was impressive. Nearly 100% of long-term care residents who died during the study period had advance directives on their charts, and the directives were thought to have guided care. What these studies demonstrate is that ACP can succeed in long-term care facilities. What is required is a combination of a receptive environment, implementation of policies designed to elucidate and communicate treatment preferences, and attention to documentation. Long-term care facilities can attend to each of the three phases of ACP and make it easier for residents and their families to consider and express treatment preferences and the values underlying them. PRACTICAL APPROACHES TO ADVANCE CARE PLANNING IN LONG-TERM CARE FACILITIES Successful approaches to ACP in long-term care facilities ensure that each step of the process is facilitated, and that potential barriers are overcome. This section outlines how the three-step model of ACP discussed earlier can be adapted to long-term care facilities using approaches similar to programs like POLST in Oregon, and advance proxy planning in VA long-term care facilities. [See Table 2] MEDICAL MANAGEMENT
Step One: Considering Treatment Choices and Values The first step is to enable residents and their families to consider their values and treatment preferences. Many residents will have completed advance directives before admission. This is a good start, but is not enough. The facility should give residents and families tools to educate them about end-of-life care options, knowledge that many patients and families lack.47 Tools such as the Your Life, Your Choices workbook48 or the Five Wishes document49 offer patients and families an organized way to consider their values and treatment preferences. Your Life, Your Choices contains a number of tools such as worksheets on health states worse than death, and advance directives forms (See Appendix). If a resident has already lost decision-making capacity, the facility should provide the tools to the resident’s surrogate. Long-term care facility staff must also address the challenge and importance of contextualizing treatment preferences. Admission to the nursing home brings with it new opportunities for providing higher intensity of care than usually available at home, and the possibility of substituting nursing home care for hospitalization. In addition, residents and families should consider health states that are perceived by many to be worse than death. When patients believe a health state is worse than
Table 3. Questions to Initiate Advance Care Planning Discussions* Domain
Questions
Advance directives ● If you couldn’t speak for yourself, who should we talk to about treatment choices? (health care proxy) ● Have you given any thought to the types of treatments you would or would not want if you could not decide for yourself? (living will) Goals
● Have you ever known anyone who was ill, or seen a program about illness on television that made you say “Oh my gosh, I wouldn’t want to live like that?” Why? ● If you got really sick today, what should be the goals of care? ● Can you think of other situations where the coals would be different?
Values
● What makes life worth living for you? ● How good is your quality of life now? ● Have you or other people you know gone through times of illness and perhaps faced difficult medical treatment decisions? How did you feel about those circumstances and the decisions that you and/or the individuals or families faced?
* Adapted from Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room.” JAMA 2000;284:2502–7. Cantor and Pearlman 105
death, 85% of the time life-sustaining treatments are rejected, and when this relationship does not hold, it is because there is an overriding value that trumps it.10 Effective ACP requires that staff have the necessary skills to lead patients and families through an emotionally challenging process. Staff should be educated about the three parts of ACP, and be given tools to make it easier to achieve successful ACP. For example, initiating ACP may be easier if staff are taught to use a set of standard questions about the goals of care, important values, and advance directives when initiating the process of ACP.50 [See Table 3] Guidance should also be given about the proper environment, participants, and timing of ACP. The second step in ACP is ensuring that there is adequate communication about treatment preferences and values. It is often helpful to address the general goals of care, rather than prematurely focusing on specific treatment choices. Tools like the POLST form are helpful in that they provide a framework for discussion, and are easy to understand. The objective of the communication should be shared understanding of choices by patients and their clinicians. This may mean that multiple meetings are held over time with the resident, the family or surrogate, and the treatment team. The shock of admission to a long-term care facility may mean that extensive ACP discussions do not occur at admission, but that family meetings and in-depth discussions are held only after time has passed and the staff has gotten to know the resident and family better. The third step in ACP is ensuring accurate and complete documentation. Facility policies that mandate the use of forms like the POLST, or levels of care like those used by Molloy et al., make it easier for residents, families, and providers to ensure that documentation unambiguously expresses the resident’s wishes. Moreover, the long-term care setting makes it possible to update the documentation over time. Forms and advance directives should be reviewed at regular intervals, at least annually, as well as when a major change in the resident’s health or level of function occurs. CONCLUSIONS Increasing evidence suggests that when ACP programs are implemented in long-term care settings, they can work to improve the likelihood that residents will be able to make choices, communicate them, and have them documented and respected. Implementation of a program designed to assist residents with all three steps in the ACP process can work for many residents of long term care. ACP can empower most long-term care residents and ensure that they receive treatments they want, while simultaneously easing the process for healthcare providers confronted with difficult treatment decisions. REFERENCES 1. Lahn M, Friedman B, Bijur P, et al. Advance directives in skilled nursing facility residents transferred to emergency departments. Acad Emerg Med. 2001;8:1158 –1162. 2. Happ MB, Capezuti E, Strumpf NE, et al. Advance care planning and end-of-life care for hospitalized nursing home residents. J Am Geriatr Soc 2002;50:829 – 835. 3. Lynn J, Nolan K, Kabcenell A, et al. Reforming care for persons near the end of life: the promise of quality improvement. Ann Intern Med 2002;137:117–122. 106 Cantor and Pearlman
4. Kane RA. Ethical themes in long-term care. In Katz PR, Kane RL, Mezey, MD, eds. Quality Care in Geriatric Settings: Focus on Ethical Issues. New York, NY: Springer;1995:130 –148. 5. Teno JM, Fisher ES, Hamel MB, et al. Medical care inconsistent with patients’ treatment goals: association with 1-year Medicare resource use and survival. J Am Geriatr Soc 2002;50:496 –500. 6. Patient Self-Determination Act, Public Law 101–508 (1990). 7. Joint Commission on the Accreditation of Healthcare Organizations. Comprehensive Accreditation Manual for Long Term Care: CAMLTC. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations, 2000: RI 2.22. 8. Hauser JM, Kleefield SF, Brennan TA, Fischbach RL. Minority populations and advance directives: Insights from a focus group methodology. Camb Q Healthc Ethics 1997;6:58 –71. 9. Patrick DL, Starks HE, Cain KC, et al. Measuring preferences for health states worse than death. Med Decis Making 1994;14:9 –18. 10. Patrick DL, Pearlman RA, Starks HE, et al. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med 1997;127:509 –517. 11. Gillick M, Berkman S, Cullen L. A patient-centered approach to advance medical planning in the nursing home. J Am Geriatr Soc 1999; 47:227–230. 12. Mezey M, Teresi J, Ramsey G, et al. Decision-making capacity to execute a health care proxy: Development and testing of guidelines. J Am Geriatr Soc 2000;48:179 –187. 13. Sulmasy DP, Terry PB, Weisman CS, et al. The accuracy of substituted judgments in patients with terminal diagnoses. Ann Intern Med 1998; 128:621– 629. 14. Suhl J, Simons P, Reedy T, Garrick T. Myth of substituted judgment: Surrogate decision-making regarding life support is unreliable. Arch Intern Med 1994;154:90 –96. 15. Seckler AB, Meier DB, Mulvihill M, Paris BE. Substituted judgments: How accurate are proxy predictions? Ann Intern Med 1991;115:92–98. 16. Fischer GS, Tulsky JA, Rose MR, et al. Patient knowledge and physician prediction of treatment preferences after discussion of advance directives. J Gen Intern Med 1998;13:447– 454. 17. Zelenik J, Post LF, Mulvihill M, et al. The doctor-proxy relationship: Perception and communication. J Law Med Ethics 1999;27:13–19. 18. Emanuel LL, Danis M, Pearlman RA, Singer PA. Advance care planning as a process: Structuring the discussions in practice. J Am Geriatr Soc 1995;43:440 – 446. 19. Larson DG, Tobin DR. End-of-life conversations: Evolving practice and theory. JAMA 2000;284:1573–1578. 20. Zerzan J, Stearns S, Hanson L. Access to palliative care and hospice in nursing homes. JAMA 2000;284:2489 –2494. 21. Keay TJ, Schonwetter RS. Hospice care in the nursing home. Am Fam Physician 1998;57:491– 494. 22. Froggatt KA. Palliative care and nursing homes: Where next? Palliat Med 2001;15:42– 48. 23. Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991; 324:882–888. 24. Emanuel LL, Emanuel EJ. The Medical Directive. A new comprehensive advance care document. JAMA 1989;261:3288 –3293. 25. See http://www.partnershipforcaring.org/Advance/faq_set.html. Accessed October 17, 2002. 26. Lynn J. Why I don’t have a living will. Law Med Health Care 1991;19: 101–104. 27. Puchalski CM, Zhong Z, Jacobs MM, et al. Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000;48:S84-S90. 28. Sehgal A, Galbraith A, Chesney M, et al. How strictly do dialysis patients want their advance directives followed? JAMA 1992 Jan 1;267:59–63. 29. Doukas DJ, McCullough L. The values history: The evaluation of the patient’s values and advance directives. J Fam Pract 1991;32:145–153. . 30. Morrison RS, Olson E, Mertz KR, Meier DE. The inaccessibility of advance directives on transfer from ambulatory to acute care settings. JAMA 1995;274:478 – 482. JAMDA – March/April 2003
31. Miles SH, Koep R, Weber E. Advance end-of-life planning: A research review. Arch Intern Med 1996;156:1062–1068. 32. Brock DW. Patient Self-Determination Act: Trumping advance directives. Hastings Cent Rep 1991;21:S5– 6. 33. Lynn J, Arkes HR, Stevens M, et al. Rethinking fundamental assumptions: SUPPORT’s implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment. J Am Geriatr Soc 2000;48:S214 –221. 34. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997;45:508 –512. 35. Teno JM, Lynn J, Phillips RS, et al. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Clin Ethics 1994;5:23–30. 36. Bradley EH, Wetle T, Horwitz SM. The patient self-determination act and advance directive completion in nursing homes. Arch Fam Med 1998;7:417– 423. 37. Teno JM, Branco KJ, Mor V, et al. Changes in advance care planning in nursing homes before and after the patient Self-Determination Act: Report of a 10-state survey. J Am Geriatr Soc 1997;45:939 –944. 38. Terry M, Zweig S. Prevalence of advance directives and do-not-resuscitate orders in community nursing facilities. Arch Fam Med 1994;3:141–145. 39. Yates JL, Glick HR. The failed Patient Self-Determination Act and policy alternatives for the right to die. J Aging Soc Policy 1997;9:29 –50. 40. Tolle SW, Tilden VP, Nelson CA, et al. A prospective study of the efficacy of the physician order form for life-sustaining treatment. J Am Geriatr Soc 1998;46:1097–1102.
MEDICAL MANAGEMENT
41. Teno JM. Looking beyond the “form” to complex interventions needed to improve end-of-life care. J Am Geriatr Soc 1998;46:1170 –1171. 42. Cantor MD. Improving advance care planning: Lessons from POLST. Physician Orders for Life-Sustaining Treatment. J Am Geriatr Soc 2000; 48:1343–1344. 43. Hurley AC, Bottino R, Volicer L. Nursing role in advance proxy planning for Alzheimer patients. Caring 1994;13:72–76. 44. Volicer L, Cantor MD, Derse AR, et al. Advance care planning by proxy for residents of long-term care facilities who lack decision-making capacity. J Am Geriatr Soc 2002;50:761–767. 45. Molloy DW, Guyatt GH, Russo R, et al. Systematic implementation of an advance directive program in nursing homes: A randomized controlled trial. JAMA 2000;283:1437–1444. 46. Hammes BJ, Rooney B. Death and end-of-life planning in one Midwestern community. Arch Intern Med 1998;158:383–390. 47. Silveira MJ, DiPiero A, Gerrity MS, Feudtner C. Patients’ knowledge of options at the end of life: Ignorance in the face of death. JAMA 2000;284:2483–2488. 48. Pearlman R, Starks H, Cain K, et al. Your Life, Your Choices—Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. Springfield, VA: US Department of Commerce, National Technical Information Service, PB#98159437;1998. Accessed at http://www. va.gov/resdev/programs/hsrd/ylyc.pdf on May 15, 2001. 49. Accessed at http://www.agingwithdignity.org/5wishes.html on April 25, 2001. 50. Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: Addressing the “elephant in the room.” JAMA 2000;284:2502–2507.
Cantor and Pearlman 107
Appendix What Makes Your Life Worth Living?* Instructions: this exercise will help you think about and express what really matters to you. For each row, check (⻫) one answer to express how you would feel if the factor by itself described you.
Life like this would be Difficult, but acceptable
Worth living, but just barely
Not worth living
Can’t answer now
I can no longer walk but get around in a wheelchair. I can no longer get outside—I spend all day at home I can no longer contribute to my family’s well being. I am in severe pain most of the time. I have severe discomfort most of the time (such as nausea, diarrhea or shortness of breath). I rely on a feeding tube to keep me alive. I rely on a breathing machine to keep me alive. I need someone to help take care of me all of the time. I can no longer control my bladder. I can no longer control my bowels. I live in a nursing home. I can no longer think clearly—I am confused all of the time. I can no longer recognize family/friends. I can no longer talk and be understood by others. My situation causes severe emotional burden for my family (such as feeling worried or stressed all of the time). I am a severe financial burden on my family. I cannot seem to “shake the blues.” Other (write in): Instructions: To help others make sense out of your answers, think about the following questions and be sure to explain your answers to your loved ones and health care providers. ● If you checked “not worth living,” does this mean that you would rather die than be kept alive? ● If you checked “can’t answer now,” what information or people do you need to help you decide? * Adapted from Pearlman R, Starks H, Cain K, Rosengren D, Patrick D. Your Life, Your Choices—Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. Springfield, VA: U.S. Department of Commerce, National Technical Information Service, PB#98159437; 1998. Accessed at http://www.va.gov/resdev/programs/hsrd/ylyc.pdf on May 15, 2001.
108 Cantor and Pearlman
JAMDA – March/April 2003
Advance Care Planning in Long-Term Care Facilities Michael D. Cantor, MD, JD, and Robert A. Pearlman, MD, MPH Residents of long-term care facilities are at risk of serious medical illnesses and being unable to express choices when difficult treatment decisions must be made. Advance care planning (ACP) allows residents to consider, make, and communicate their preferences for how medical decisions should be made if they are unable to participate in the decision-making process. This article reviews the three steps in ACP: consideration of options and expression of values, communication of decisions, and documentation of the choices.
The article defines and describes the particular value of ACP in long-term care facilities, reviews the literature on successful ACP programs in long-term care, and concludes with practical suggestions on how to develop and implement ACP programs. (J Am Med Dir Assoc 2003; 4: 101–107)
Provision of care to the frail older residents of long-term care facilities must be tailored to meet their goals. Unfortunately, residents do not always get the amount and type of care they prefer.1–3 Fortunately, advance care planning (ACP), the process of exploring and communicating values and treatment preferences in advance of when decisions need to be made, can increase the likelihood that residents will get the care they want and need. If ACP is to succeed, it requires facility and staff commitment to the development and implementation of policies and programs supporting this complex process. Why should long-term care facilities implement ACP programs? First, without ACP it is not possible to know what choices a resident and family would make, or what underlying values should drive future decision making. Second, residents do not lose the right to make their own choices, or to have surrogates speak on their behalf, when they enter nursing homes.4 Facilities are ethically obligated to ensure that resi-
dents are empowered to make healthcare decisions. ACP may save time, effort, and resources.5 Attempting to make critical healthcare decisions that have not been previously discussed or considered can be much more time consuming and difficult than having discussions in advance and creating clear care plans. At the minimum, ACP allows conflicts to be identified early and hopefully resolved in a timely fashion. Third, there are legal and regulatory requirements such as the Patient Self Determination Act discussed later in this paper, that affect the use of advance directives.6,7 ACP will not work for every resident. Some residents lack decisional capacity and cannot participate in the process. Others do not have anyone who could act as a surrogate. Some residents come from cultural backgrounds that emphasize communal or family decision making or that view discussion of future illness as taboo; and others are unwilling or unable to consider or discuss death and dying.8 Even with these limitations, ACP offers the hope of such significant benefits for residents of long-term care facilities that it is critical for every facility to have a comprehensive ACP program. This article will provide practical information for long-term care practitioners and administrators who are responsible for creating and implementing facility ACP programs. It will characterize the process of ACP, define the role of advance directives in ACP, review the literature on ACP in long-term care, and conclude with practical suggestions on how to integrate ACP into long-term care settings.
Geriatric Research, Education, and Clinical Center (182) Veterans Affairs Boston Health Care System—Jamaica Plain Campus, Jamaica Plain, Massachusetts (M.D.C.), and the National Center for Ethics in Health Care of the Veterans Health Administration, Veterans Affairs Puget Sound Health Care System, University of Washington School of Medicine Department of Medicine, Division of Gerontology and Geriatric Medicine (S-182-GRECC), Seattle, Washington (R.A.P.). The opinions expressed in this paper do not necessarily reflect those of the Department of Veterans Affairs or the United States Government. Address correspondence to Michael D. Cantor, MD, JD, Geriatric Research, Education, and Clinical Center (182) Building 9, 3rd floor, VA Boston Health Care System—Jamaica Plain Campus, 150 South Huntington Ave., Jamaica Plain, MA 02130. E-mail: [email protected].
Copyright ©2003 American Medical Directors Association DOI: 10.1097/01.JAM.0000052563.45932.FC MEDICAL MANAGEMENT
Keywords: advance care planning; long term care; advance directives
DEFINING ADVANCE CARE PLANNING ACP is a three-part process involving consideration of options and expression of values, communication of decisions, Cantor and Pearlman 101
and documentation of the choices made. Ensuring that each part of this process occurs requires addressing barriers to successful ACP in nursing homes and implementing methods to increase the quality of the ACP process. The first part of the ACP process requires the long-term care resident and family to consider and make decisions regarding future healthcare choices. The person needs to consider how they would want medical decisions to be made as well as the content of the decisions. A resident may decide that a surrogate may make the decisions, that the care team should have discretion in making decisions, or some combination of these options. The resident may choose to offer specific guidance about the values that should guide decision making, or leave it up to the discretion of the surrogates and clinicians to decide what is best under the circumstances. Alternatively, the resident may make specific treatment choices, such as not to be hospitalized, or not to be fed through a feeding tube. Gaining insight into a resident’s goals for care may provide a useful framework for determining which treatments are acceptable and which should be avoided. Several studies demonstrate that it is possible for older people to make treatment choices and appoint surrogates. The work of Patrick et al. demonstrates that people are capable of determining what, if any, health states are worse than death, and that when a health state is worse than death, they choose to limit treatments that are likely to result in the patient surviving in one of those health states.9,10 Gillick and colleagues showed that residents of a long-term care facility are capable of determining and expressing goals of care, and choosing treatments that reflect their preferences to limit care in certain situations.11 Studies of the selection of surrogates by Mezey et al. demonstrate that even residents with advanced dementia and Mini-Mental Status scores of less than 10 (normal range 25–30) are frequently able to comprehend the meaning of surrogate selection and can appoint someone to make decisions for them.12 Completing the difficult and emotionally challenging task of considering treatment preferences and choosing a surrogate is only the first part of ACP. The second part of the process is communicating the choices and values determined during the first stage. The literature shows that even when patients go through the effort of appointing a surrogate, surrogates are often unprepared, do not make treatment choices that are consistent with patient preferences,13–16 and sometimes feel guilt and emotional distress from the burden of decision making.17 Successful ACP utilizes tools that increase the likelihood that meaningful communication will occur. ACP discussions may be more successful when facilitated by a healthcare professional. The availability of social workers, case managers, and nurses in long-term care facilities makes it easier for facilitation to occur. Physicians must be kept informed of advance care plans and should be involved as much as possible, but the primary responsibility for leading patients and families through discussions of values and treatment choices may rest on non-physician providers.18 The second stage of the ACP process, communication of preferences, also offers a valuable opportunity for nursing home residents, families, and staff to discuss future care. This can be especially important when there is a court-appointed guardian 102 Cantor and Pearlman
or when an ombudsman is involved. These conversations can help residents and staff prepare for advancing chronic illness or sudden onset of new health problems. This is also an opportunity for important discussions between the resident and family members who will be making healthcare decisions if the resident is unable to do so. The long-term care facility provides a context for discussions that can occur over time, in an environment that provides support and permits decisions and understanding to evolve over time. This fits well into an approach to end-of-life conversations that permits people to approach death prepared for the many decisions that dying brings.19 These conversations can also encourage discussion of the need for palliative care and hospice, both of which are inadequately provided in many long-term care facilities.20 –22 The third step in the ACP process is to document the person’s preferences. Advance directives (ADs) are often used to document preferences, but are only a part of this critical step. Documentation usually includes writing down the person’s choices of surrogate, desired treatments, values, and preferences for how much latitude the surrogate and physicians should have in determining what is best for the patient. This information needs to be available in a place where it can be located when needed. For example, documentation of out-of-hospital “do not resuscitate” (DNR) orders permitting residents to be DNR when being transported between care settings is important information for the caretaker to know. Long-term care facilities have the advantage of permanent charts that can be designed to include a place for documentation of ACP discussions as well as advance directives forms. ROLE OF ADVANCE DIRECTIVES IN ADVANCE CARE PLANNING Advance directives (ADs) are important tools for ACP, but do not ensure that patient’s preferences will be known or respected if the person loses the capacity to make decisions. Advance directives fail to ensure that wishes are expressed and respected for several reasons. First, the documents are imprecise, vague, and static. Second, logistical problems often prevent ADs from being recognized or available when needed. Third, providers lack understanding of how ADs work and when they are effective. Finally, some physicians will trump wishes expressed by the AD document or the patient’s surrogate when they feel that it is in the patient’s best interests to do so.23 AD documents are often unable to clearly guide clinical decision makers. There are two major types of advance directives. The first type, called “instructional directives,” allows patients to document treatment preferences. Living wills are the most common type of instructional directive. They typically contain language that instructs the treatment team to withhold life-sustaining treatments if the patient is terminally ill and unable to express treatment choices and the treatment merely prolongs dying. Variations of the living will include the medical directive,24 a document that lists various illness scenarios and allows patients to check boxes that indicate what types of treatments they would choose in the various scenarios. Surrogate or proxy directives allow a person to appoint someone to act as their spokesperson if the person loses decisional capacity or the ability to express treatment choices. JAMDA – March/April 2003
State laws determine the specifics of advance directives. For example, some states, such as Massachusetts, do not recognize living wills. There are also many smaller variations, such as limitations on the powers of the surrogate, and the name used for surrogate directives, such as a “durable power of attorney for health care,” or a “healthcare proxy.”25 Long-term care facilities should seek guidance from legal counsel and state regulatory agencies regarding the specifics of advance directives in their state. Advance directives have many important limitations that prevent them from achieving the ultimate goal of ensuring that patients are able to clearly express their values and treatment preferences. Living wills have limited applicability, in that they often do not say what to do in specific circumstances. The descriptions and information about treatment preferences are often so sketchy that they are difficult to interpret—especially when the circumstances do not match whatever is identified in the AD. The risk of clinicians drawing wrong conclusions is so great that one end-of-life care expert has declared that she would never create a living will.26 Moreover, preferences may be determined by misguided beliefs such as a false causal link between two events that are temporally related (eg, being on a ventilator and dying, or being on a ventilator and having pain). Studies demonstrate that patients often prefer that family members make decisions based on their judgment of what is best rather than relying on written directives.27,28 Surrogate directives have the advantage of appointing a person who can speak on behalf of the patient, but surrogates often are unsure of what a patient would choose13–16 and have difficulty making decisions to limit care.17 Values histories are sometimes used in addition to advance directives, because they allow patients to express important values rather than focusing on choosing specific treatments to
accept or reject.29 However, values histories have been shown to have a limited relationship to treatment preferences.29 Also, values histories suffer from the same vagueness and static nature as advance directives. The problems that prevent advance directives from ensuring that residents’ preferences are respected are compounded by a variety of other problems, including that they are often unavailable when needed,30,31 and that clinicians may trump choices expressed by surrogates.32 The Study to Understand Prognoses and Preferences and Risks of Treatment (SUPPORT), the largest study of end-of-life decision making conducted in the United States, found that advance directives may have little impact on the process of medical decision making for terminally-ill hospitalized patients.33–35 Despite the problems with advance directives as ACP tools, legal and regulatory systems emphasize their importance. The Patient Self-Determination Act (PSDA)6 requires that all residents admitted to long-term care facilities be offered information about their right to make advance care directives. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) accreditation standards also require that patients be asked whether they have advance directives at admission, and that they be offered the opportunity to make advance directives.7 The literature shows that the PSDA has led to an increase in the number of nursing home residents with documented advance directives,36 –38 but that in other settings, it has not had as much of an impact on the prevalence of advance directives.39 A growing literature on ACP in long-term care suggests that even though advance directives are not sufficient to ensure successful ACP, programs of comprehensive ACP can make a difference in the types of care that residents receive.
Table 1. Physician Orders for Life-Sustaining Treatment (POLST) Questions and Options* Topic
Question
Choices
Resuscitation
If your heart stops beating and you are not breathing, do you want cardiopulmonary resuscitation?
● Resuscitate ● Do Not Resuscitate (DNR)
Medical Interventions
What level of medical services would you want if you were to get ill?
● ● ● ●
Antibiotics
What level of antibiotics do you want if you have an infection?
● Full Treatment ● No invasive (IM/IV) antibiotics ● No antibiotics except if needed for comfort
Artificially Administered Fluids and Nutrition
If you cannot take fluids by mouth, would you want to receive fluids and nutrition artificially?
● Full treatment ● No long term feeding or IV fluids ● No feeding tube/IV fluids
Full Treatment/Resuscitation Advanced Interventions Limited Interventions Comfort Measures Only
* Adapted from the Physicians Orders for Life Sustaining Treatment (POLST) Form, Dunn PM, Schmidt TA, Carley MM, Donius M, Weinstein MA, Dull VT. A method to communicate patient preferences about medically indicated life-sustaining treatment in the out-of-hospital setting. J Am Geriatr Soc 1996;44:785–791. MEDICAL MANAGEMENT
Cantor and Pearlman 103
SPECIAL APPROACHES TO ADVANCE CARE PLANNING IN LONG-TERM CARE In contrast with other settings, ACP processes that are tailored to fit the special needs of long-term care residents can help determine the type of care provided. The most successful processes usually standardize the process to some extent, and use common policies, forms, and communication strategies to ensure that preferences are thoroughly discussed, communicated, and documented. We will briefly review a few of the more important studies of ACP strategies in long-term care. The Physician Orders for Life Sustaining Treatment (POLST) program has demonstrated that use of a standardized form can ensure that long-term care patients have their choices about resuscitation and hospitalization respected.40 Developed and implemented by a coalition of healthcare institutions in Oregon, the POLST program centers on using a form that offers residents four basic treatment choices: resuscitation status, use of antibiotics, use of artificial nutrition and hydration, and hospitalization (Table 1). One of the major advantages of the POLST form is that it is actually a physician order form. Unlike advance directives, POLST forms do not have to be interpreted—their instructions are clear, and they determine the treatments that are given or
withheld. One study of the POLST form demonstrated that residents who had DNR orders had their wishes respected 100% of the time, and that only 2% of the time were do not hospitalize orders in the POLST form overridden for the purpose of extending life.40 As the commentators on POLST have noted, the intervention consisted of more than completing a form.41,42 The process of developing the POLST system included creating a coalition of long-term care facilities, hospitals, and emergency medical systems to develop common policies and educational interventions. Clinicians, administrators and residents were all involved in ensuring that the proper conditions existed for POLST to work. A similar approach to ACP has been used in some Veterans Administration (VA) long-term care facilities. The Bedford, Massachusetts, long-term care facility has used an approach called “advance proxy planning” in its dementia care unit for more than 10 years.43 Advance proxy planning requires proxies to have discussions regarding care for residents with dementia in advance of the time that the decisions have to be made. A form similar to the POLST is used to structure discussions with the surrogates of the residents and to ask them about use of antibiotics, use of medical nutrition and hydration, and hospitalization. Surrogates are sometimes the
Table 2. Barriers to Advance Care Planning and Strategies to Overcome Them Barriers
Strategies for Medical Directors
Resident, family and staff difficulty thinking and talking about death and dying
● Educational materials for patients and families ● Education of staff about advance care, planning tools and strategies ● Policies requiring advance care, planning discussions ● Practice
Advance directives focus on treatment choices rather than resident and family concerns
● Address resident and family concerns before discussing treatments ● Discuss resident health state preferences, then assess treatment choice consistency
Cognitively impaired residents not capable of participating in advance care planning
● Assess resident for capacity to appoint surrogate ● Work with surrogate to develop advance proxy planning decisions
Differing experience and understanding of life-sustaining treatment
● Careful discussion of resident fears and concerns ● Work to create shared understanding of current health state and likely challenges in the future
Documentation not available when needed
● Standardize forms and documents used in advance care planning ● Create location in patient charts where documents and progress notes related to advance care planning can be located ● Send advance care planning documentation when resident transferred to other settings
Lack of time to discuss advance care planning
● Require discussion of resuscitation status within 48 hours of admission ● Include advance care planning in regular resident/ family/team care planning meetings ● Periodically discuss advance care planning at regular intervals or when condition changes
104 Cantor and Pearlman
JAMDA – March/April 2003
person named in advance directive documents, but are often the next of kin or person who is authorized to make the decision. By having the discussion before the crisis emerges, some of the anxiety and stress of end-of-life decision-making can be alleviated. The Veterans Health Administration’s (VHA’s) National Ethics Committee recently issued a report recommending that VA long-term care facilities consider using ACP with their residents.44 A slightly different approach was used by Molloy et al. in their program of ACP for long-term care residents in Ontario, Canada.45 The “Let Me Decide” directive planning document permitted selection of a proxy as well as allowing residents to choose levels of care for life-threatening illness (intensive to palliative), nutrition, and resuscitation status. Facilitators were trained to use the document to guide residents and families through discussions about treatment preferences. The study demonstrated that residents in facilities that implemented this approach were less likely to be hospitalized, and that the costs of care were reduced. Despite this, family satisfaction with care was not significantly different than in facilities where residents received routine ACP. The other major study that demonstrated successful ACP is the LaCrosse Advance Directives Study (LADS).46 LADS demonstrated that in the midwestern community of LaCrosse, Wisconsin, it was possible to improve the use of advance directives and the ACP process. The study demonstrated that 85% of people who died during the year-long study period had advance directives, and that the wishes expressed in the documents were followed more than 90% of the time. This was achieved after a 5-year effort that involved all local hospitals and long-term care facilities agreeing to use the same ACP process that included facilitation of ACP discussions as well as shared policies, documents, and even posters announcing the availability of the program. Even though the program was aimed at the entire community, its impact on long-term care facilities was impressive. Nearly 100% of long-term care residents who died during the study period had advance directives on their charts, and the directives were thought to have guided care. What these studies demonstrate is that ACP can succeed in long-term care facilities. What is required is a combination of a receptive environment, implementation of policies designed to elucidate and communicate treatment preferences, and attention to documentation. Long-term care facilities can attend to each of the three phases of ACP and make it easier for residents and their families to consider and express treatment preferences and the values underlying them. PRACTICAL APPROACHES TO ADVANCE CARE PLANNING IN LONG-TERM CARE FACILITIES Successful approaches to ACP in long-term care facilities ensure that each step of the process is facilitated, and that potential barriers are overcome. This section outlines how the three-step model of ACP discussed earlier can be adapted to long-term care facilities using approaches similar to programs like POLST in Oregon, and advance proxy planning in VA long-term care facilities. [See Table 2] MEDICAL MANAGEMENT
Step One: Considering Treatment Choices and Values The first step is to enable residents and their families to consider their values and treatment preferences. Many residents will have completed advance directives before admission. This is a good start, but is not enough. The facility should give residents and families tools to educate them about end-of-life care options, knowledge that many patients and families lack.47 Tools such as the Your Life, Your Choices workbook48 or the Five Wishes document49 offer patients and families an organized way to consider their values and treatment preferences. Your Life, Your Choices contains a number of tools such as worksheets on health states worse than death, and advance directives forms (See Appendix). If a resident has already lost decision-making capacity, the facility should provide the tools to the resident’s surrogate. Long-term care facility staff must also address the challenge and importance of contextualizing treatment preferences. Admission to the nursing home brings with it new opportunities for providing higher intensity of care than usually available at home, and the possibility of substituting nursing home care for hospitalization. In addition, residents and families should consider health states that are perceived by many to be worse than death. When patients believe a health state is worse than
Table 3. Questions to Initiate Advance Care Planning Discussions* Domain
Questions
Advance directives ● If you couldn’t speak for yourself, who should we talk to about treatment choices? (health care proxy) ● Have you given any thought to the types of treatments you would or would not want if you could not decide for yourself? (living will) Goals
● Have you ever known anyone who was ill, or seen a program about illness on television that made you say “Oh my gosh, I wouldn’t want to live like that?” Why? ● If you got really sick today, what should be the goals of care? ● Can you think of other situations where the coals would be different?
Values
● What makes life worth living for you? ● How good is your quality of life now? ● Have you or other people you know gone through times of illness and perhaps faced difficult medical treatment decisions? How did you feel about those circumstances and the decisions that you and/or the individuals or families faced?
* Adapted from Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room.” JAMA 2000;284:2502–7. Cantor and Pearlman 105
death, 85% of the time life-sustaining treatments are rejected, and when this relationship does not hold, it is because there is an overriding value that trumps it.10 Effective ACP requires that staff have the necessary skills to lead patients and families through an emotionally challenging process. Staff should be educated about the three parts of ACP, and be given tools to make it easier to achieve successful ACP. For example, initiating ACP may be easier if staff are taught to use a set of standard questions about the goals of care, important values, and advance directives when initiating the process of ACP.50 [See Table 3] Guidance should also be given about the proper environment, participants, and timing of ACP. The second step in ACP is ensuring that there is adequate communication about treatment preferences and values. It is often helpful to address the general goals of care, rather than prematurely focusing on specific treatment choices. Tools like the POLST form are helpful in that they provide a framework for discussion, and are easy to understand. The objective of the communication should be shared understanding of choices by patients and their clinicians. This may mean that multiple meetings are held over time with the resident, the family or surrogate, and the treatment team. The shock of admission to a long-term care facility may mean that extensive ACP discussions do not occur at admission, but that family meetings and in-depth discussions are held only after time has passed and the staff has gotten to know the resident and family better. The third step in ACP is ensuring accurate and complete documentation. Facility policies that mandate the use of forms like the POLST, or levels of care like those used by Molloy et al., make it easier for residents, families, and providers to ensure that documentation unambiguously expresses the resident’s wishes. Moreover, the long-term care setting makes it possible to update the documentation over time. Forms and advance directives should be reviewed at regular intervals, at least annually, as well as when a major change in the resident’s health or level of function occurs. CONCLUSIONS Increasing evidence suggests that when ACP programs are implemented in long-term care settings, they can work to improve the likelihood that residents will be able to make choices, communicate them, and have them documented and respected. Implementation of a program designed to assist residents with all three steps in the ACP process can work for many residents of long term care. ACP can empower most long-term care residents and ensure that they receive treatments they want, while simultaneously easing the process for healthcare providers confronted with difficult treatment decisions. REFERENCES 1. Lahn M, Friedman B, Bijur P, et al. Advance directives in skilled nursing facility residents transferred to emergency departments. Acad Emerg Med. 2001;8:1158 –1162. 2. Happ MB, Capezuti E, Strumpf NE, et al. Advance care planning and end-of-life care for hospitalized nursing home residents. J Am Geriatr Soc 2002;50:829 – 835. 3. Lynn J, Nolan K, Kabcenell A, et al. Reforming care for persons near the end of life: the promise of quality improvement. Ann Intern Med 2002;137:117–122. 106 Cantor and Pearlman
4. Kane RA. Ethical themes in long-term care. In Katz PR, Kane RL, Mezey, MD, eds. Quality Care in Geriatric Settings: Focus on Ethical Issues. New York, NY: Springer;1995:130 –148. 5. Teno JM, Fisher ES, Hamel MB, et al. Medical care inconsistent with patients’ treatment goals: association with 1-year Medicare resource use and survival. J Am Geriatr Soc 2002;50:496 –500. 6. Patient Self-Determination Act, Public Law 101–508 (1990). 7. Joint Commission on the Accreditation of Healthcare Organizations. Comprehensive Accreditation Manual for Long Term Care: CAMLTC. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations, 2000: RI 2.22. 8. Hauser JM, Kleefield SF, Brennan TA, Fischbach RL. Minority populations and advance directives: Insights from a focus group methodology. Camb Q Healthc Ethics 1997;6:58 –71. 9. Patrick DL, Starks HE, Cain KC, et al. Measuring preferences for health states worse than death. Med Decis Making 1994;14:9 –18. 10. Patrick DL, Pearlman RA, Starks HE, et al. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med 1997;127:509 –517. 11. Gillick M, Berkman S, Cullen L. A patient-centered approach to advance medical planning in the nursing home. J Am Geriatr Soc 1999; 47:227–230. 12. Mezey M, Teresi J, Ramsey G, et al. Decision-making capacity to execute a health care proxy: Development and testing of guidelines. J Am Geriatr Soc 2000;48:179 –187. 13. Sulmasy DP, Terry PB, Weisman CS, et al. The accuracy of substituted judgments in patients with terminal diagnoses. Ann Intern Med 1998; 128:621– 629. 14. Suhl J, Simons P, Reedy T, Garrick T. Myth of substituted judgment: Surrogate decision-making regarding life support is unreliable. Arch Intern Med 1994;154:90 –96. 15. Seckler AB, Meier DB, Mulvihill M, Paris BE. Substituted judgments: How accurate are proxy predictions? Ann Intern Med 1991;115:92–98. 16. Fischer GS, Tulsky JA, Rose MR, et al. Patient knowledge and physician prediction of treatment preferences after discussion of advance directives. J Gen Intern Med 1998;13:447– 454. 17. Zelenik J, Post LF, Mulvihill M, et al. The doctor-proxy relationship: Perception and communication. J Law Med Ethics 1999;27:13–19. 18. Emanuel LL, Danis M, Pearlman RA, Singer PA. Advance care planning as a process: Structuring the discussions in practice. J Am Geriatr Soc 1995;43:440 – 446. 19. Larson DG, Tobin DR. End-of-life conversations: Evolving practice and theory. JAMA 2000;284:1573–1578. 20. Zerzan J, Stearns S, Hanson L. Access to palliative care and hospice in nursing homes. JAMA 2000;284:2489 –2494. 21. Keay TJ, Schonwetter RS. Hospice care in the nursing home. Am Fam Physician 1998;57:491– 494. 22. Froggatt KA. Palliative care and nursing homes: Where next? Palliat Med 2001;15:42– 48. 23. Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med 1991; 324:882–888. 24. Emanuel LL, Emanuel EJ. The Medical Directive. A new comprehensive advance care document. JAMA 1989;261:3288 –3293. 25. See http://www.partnershipforcaring.org/Advance/faq_set.html. Accessed October 17, 2002. 26. Lynn J. Why I don’t have a living will. Law Med Health Care 1991;19: 101–104. 27. Puchalski CM, Zhong Z, Jacobs MM, et al. Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000;48:S84-S90. 28. Sehgal A, Galbraith A, Chesney M, et al. How strictly do dialysis patients want their advance directives followed? JAMA 1992 Jan 1;267:59–63. 29. Doukas DJ, McCullough L. The values history: The evaluation of the patient’s values and advance directives. J Fam Pract 1991;32:145–153. . 30. Morrison RS, Olson E, Mertz KR, Meier DE. The inaccessibility of advance directives on transfer from ambulatory to acute care settings. JAMA 1995;274:478 – 482. JAMDA – March/April 2003
31. Miles SH, Koep R, Weber E. Advance end-of-life planning: A research review. Arch Intern Med 1996;156:1062–1068. 32. Brock DW. Patient Self-Determination Act: Trumping advance directives. Hastings Cent Rep 1991;21:S5– 6. 33. Lynn J, Arkes HR, Stevens M, et al. Rethinking fundamental assumptions: SUPPORT’s implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment. J Am Geriatr Soc 2000;48:S214 –221. 34. Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997;45:508 –512. 35. Teno JM, Lynn J, Phillips RS, et al. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Clin Ethics 1994;5:23–30. 36. Bradley EH, Wetle T, Horwitz SM. The patient self-determination act and advance directive completion in nursing homes. Arch Fam Med 1998;7:417– 423. 37. Teno JM, Branco KJ, Mor V, et al. Changes in advance care planning in nursing homes before and after the patient Self-Determination Act: Report of a 10-state survey. J Am Geriatr Soc 1997;45:939 –944. 38. Terry M, Zweig S. Prevalence of advance directives and do-not-resuscitate orders in community nursing facilities. Arch Fam Med 1994;3:141–145. 39. Yates JL, Glick HR. The failed Patient Self-Determination Act and policy alternatives for the right to die. J Aging Soc Policy 1997;9:29 –50. 40. Tolle SW, Tilden VP, Nelson CA, et al. A prospective study of the efficacy of the physician order form for life-sustaining treatment. J Am Geriatr Soc 1998;46:1097–1102.
MEDICAL MANAGEMENT
41. Teno JM. Looking beyond the “form” to complex interventions needed to improve end-of-life care. J Am Geriatr Soc 1998;46:1170 –1171. 42. Cantor MD. Improving advance care planning: Lessons from POLST. Physician Orders for Life-Sustaining Treatment. J Am Geriatr Soc 2000; 48:1343–1344. 43. Hurley AC, Bottino R, Volicer L. Nursing role in advance proxy planning for Alzheimer patients. Caring 1994;13:72–76. 44. Volicer L, Cantor MD, Derse AR, et al. Advance care planning by proxy for residents of long-term care facilities who lack decision-making capacity. J Am Geriatr Soc 2002;50:761–767. 45. Molloy DW, Guyatt GH, Russo R, et al. Systematic implementation of an advance directive program in nursing homes: A randomized controlled trial. JAMA 2000;283:1437–1444. 46. Hammes BJ, Rooney B. Death and end-of-life planning in one Midwestern community. Arch Intern Med 1998;158:383–390. 47. Silveira MJ, DiPiero A, Gerrity MS, Feudtner C. Patients’ knowledge of options at the end of life: Ignorance in the face of death. JAMA 2000;284:2483–2488. 48. Pearlman R, Starks H, Cain K, et al. Your Life, Your Choices—Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. Springfield, VA: US Department of Commerce, National Technical Information Service, PB#98159437;1998. Accessed at http://www. va.gov/resdev/programs/hsrd/ylyc.pdf on May 15, 2001. 49. Accessed at http://www.agingwithdignity.org/5wishes.html on April 25, 2001. 50. Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: Addressing the “elephant in the room.” JAMA 2000;284:2502–2507.
Cantor and Pearlman 107
Appendix What Makes Your Life Worth Living?* Instructions: this exercise will help you think about and express what really matters to you. For each row, check (⻫) one answer to express how you would feel if the factor by itself described you.
Life like this would be Difficult, but acceptable
Worth living, but just barely
Not worth living
Can’t answer now
I can no longer walk but get around in a wheelchair. I can no longer get outside—I spend all day at home I can no longer contribute to my family’s well being. I am in severe pain most of the time. I have severe discomfort most of the time (such as nausea, diarrhea or shortness of breath). I rely on a feeding tube to keep me alive. I rely on a breathing machine to keep me alive. I need someone to help take care of me all of the time. I can no longer control my bladder. I can no longer control my bowels. I live in a nursing home. I can no longer think clearly—I am confused all of the time. I can no longer recognize family/friends. I can no longer talk and be understood by others. My situation causes severe emotional burden for my family (such as feeling worried or stressed all of the time). I am a severe financial burden on my family. I cannot seem to “shake the blues.” Other (write in): Instructions: To help others make sense out of your answers, think about the following questions and be sure to explain your answers to your loved ones and health care providers. ● If you checked “not worth living,” does this mean that you would rather die than be kept alive? ● If you checked “can’t answer now,” what information or people do you need to help you decide? * Adapted from Pearlman R, Starks H, Cain K, Rosengren D, Patrick D. Your Life, Your Choices—Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. Springfield, VA: U.S. Department of Commerce, National Technical Information Service, PB#98159437; 1998. Accessed at http://www.va.gov/resdev/programs/hsrd/ylyc.pdf on May 15, 2001.
108 Cantor and Pearlman
JAMDA – March/April 2003