Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life (2015) / Chapter Skim
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3 Clinician-Patient Communication and Advance Care Planning
3 Clinician-Patient Communication and Advance Care Planning
Pages 117-220
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From page 117... ...
The "living will" -- conceived as a document designed to protect people's legal right to have the amount and kinds of medical treatment they want even if they can no longer express that choice themselves -- was perceived as the solution for Americans' concerns about being "hooked up to machines" for long periods or, conversely, being protected against premature "pulling of the plug." Nonetheless, this legal approach has been disappointingly ineffective in improving the care people nearing the end of life receive and in ensuring that this care accords with their informed preferences. This chapter describes some of the reasons for that failure and the evolution of new and potentially more effective approaches to advance care planning.
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From page 118... ...
This is followed by discussion of several model advance care planning programs 1 hese T individuals are variously called surrogates, proxies, or agents. A health care agent is an individual designated in an advance directive, while a health care proxy is any designated substitute decision maker, including a guardian or conservator.
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From page 119... ...
report Approaching Death (IOM, 1997) reviews many of the then-recognized shortcomings of the advance directive approach: • patients' and families' lack of awareness of or interest in complet ing forms; • clinicians' unwillingness to adhere to patients' wishes; • difficulties in having meaningful family conversations about pa tients' wishes and in making choices in the face of prognostic uncertainty;
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From page 120... ...
rather than the broader and more difficult to document topic of advance care planning, this chapter likewise talks about directives. It should be noted, however, that while the committee consistently found shortcomings in advance directives, it is more optimistic about the potential benefits of advance care planning.
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From page 121... ...
Regional and national efforts to encourage advance care planning have 2 atural N Death Act, Ch.
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Community Conversations on Compassionate Care (CCCC) ,4 operating in Upstate New York, was launched with a press conference of spiritual leaders in Rochester, New York, in 2002 to encourage everyone aged 18 and older to start early advance care planning discussions.
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From page 123... ...
. United States to effectively engage various population groups through religious, veterans, and other organizations with which they are connected and makes advance directives and related resources available through its Caring Conversations® initiative.5 Nationally, the American Bar Association Commission on Law and Aging6 has produced a comprehensive "Consumer's 5 ee https://www.practicalbioethics.org/resources/caring-conversations (accessed December S 16, 2014)
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From page 124... ...
THE CURRENT STATE OF ADVANCE CARE PLANNING AND WHAT IT ACHIEVES The ethical principle of autonomy underlies much of the thinking about advance care planning in the United States. But the principle of autonomy -- particularly with a growing segment of the population that highly values 7 ee S http://www.nhdd.org/public-resources (accessed December 16, 2014)
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From page 125... ...
, the demographic groups most likely to have had a discussion about end-of-life issues with a loved one were those aged 65 and older, whites, people with higher education and income, and those with one or more chronic conditions (see the
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From page 126... ...
review, advance care planning is least likely to take place in hospitals and intensive care settings, perhaps because of patients' physical, mental, or cognitive state or because the overriding impulse is to provide what the authors call aggressive treatment. By contrast, nursing home residents are more likely than individuals in other care settings to complete advance directives.
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From page 127... ...
Upstate New York data were collected as part of a serial data collection on advance care planning among ~6,000 employees of Excellus BlueCross BlueShield and other subsidiaries in Upstate New York since 2002. Results reflect a 2013 data update.
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From page 128... ...
.10 A stages of change strategy for advance care planning would approach people differently depending on whether they needed help in completing an advance directive, naming a health care agent, or communicating their preferences to their physician or family members (Fried et al., 2010)
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From page 129... ...
Being a health care agent is a difficult job and an extra burden on an already stressed spouse, partner, parent, or child. Close family members may be unable to separate their feelings from the needs of the situation, be unwilling to face the prognosis or talk through the patient's wishes, or be unable to handle conflicts that arise among family members or with clinical staff.
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From page 130... ...
See Appendix C you have prior experience as someone's health care agent, and have you had prior conversations with the patient about treatment preferences?
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From page 131... ...
Thus, even if a proxy form is not signed or if the chosen health care agent is not reasonably available, a priority list of people who can make decisions if the patient cannot is generally in place. State laws vary, but such lists generally start with the immediate family.
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. While the predominant conversation about advance care planning focuses on people who want to avoid intensive and nonbeneficial medical interventions, the recent controversy over "death panels" (see Chapter 6)
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. The fact that the remainder would honor patients' directives in such a situation suggests that, despite several decades of experience, some 40 percent of physicians remain confused about the purpose and interpretation of advance directives.
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From page 134... ...
. As discussed in detail in the section on electronic health records later in this chapter, data standards for electronic health records that help promote document portability, availability, and agreement do not require robust documentation of advance care planning.
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From page 135... ...
They suggest that a preferable alternative to rigid advance directives is comprehensive advance care planning, which can take into account a broader array of issues and social relationships and can include spiritual and cultural matters, as well as practical concerns. Taking this argument a step further are those who recommend that advance care planning's main objective should not be to make advance treatment decisions, but "to prepare patients and surrogates to work with their clinicians to make the best possible in-the-moment medical decisions" (Sudore and Fried, 2010, p.
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From page 136... ...
. • Advance care planning supports several of the primary concerns of people with life-limiting illnesses: involvement, clear communi cation, shared decision making (Steinhauser et al., 2000b)
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What Are the Effects of Advance Care Planning on Health Care Agents and Families? Health care agents and surrogates (including those who are family members)
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. Health care agents may also be helped by previous decision
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Several large studies have attempted to assess the impact of advance care planning on health care costs. One found no association between advance care planning (either reported completion of an advance directive or discussion of care preferences)
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. Costs of care in the last week of life were 36 percent lower among 16 hese T findings were adjusted to take into account potential confounders such as advance directives and advance care planning.
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From page 141... ...
Children and the Elderly Children The typical barriers to conducting advance care planning in adult populations -- reluctance to discuss dying, cultural norms that support family-level decisions, clinician time constraints, unpredictable disease trajectories, and insufficient clinician preparation to conduct such discussions -- also are present when the patient is a child.17 In addition, the process is made more difficult by concerns regarding the child's cognitive and emotional development and both the child's and parents' readiness to participate in such conversations; the emotional burden on parents and caregivers; differences in understanding of prognosis between clinician and child/parent; unrealistic expectations among parents; and the need for a three-way conversation and communication among parents, children, and clinicians (Durall et al., 2012)
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From page 142... ...
. Five Wishes,18 an advance directive written in nontechnical language, includes identification of a health care agent, as well as choices about medical and nonmedical treatment and comfort.
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From page 143... ...
Few studies of pediatric advance care planning have been conducted, and those generally have involved small numbers of patients and families. A recent review found three reports of systematic advance care planning programs specifically for children, all in the United States (Lotz et al., 2013)
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From page 144... ...
. The Elderly Older Americans are more likely than those who are younger to have thought about their end-of-life preferences or completed an advance directive (CHCF, 2012; Pew Research Center, 2013; Tompson et al., 2013)
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From page 145... ...
. Infrequently considered is that an older person's net financial worth is positively associated with participating in any type of advance care planning, regardless of demographic, health, and psychological characteristics.
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From page 146... ...
. A test of whether homeless people can and will complete a counseling session on advance care planning and an advance directive was conducted in Minneapolis (Song et al., 2010)
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From page 147... ...
. One approach suggested to improve the relevance and suitability of advance care planning to people with disabilities is to reconsider including disabling conditions as a reason for limiting treatment in living wills and make greater efforts to help health care agents understand the complex choices involved when a medical condition or injury might lead to substantial disability (Stein, 2003)
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From page 148... ...
Two specific attitudes accounted for this difference: fundamentalists were less likely to believe that quality of life is more important than just staying alive and more likely to say that their religious or spiritual beliefs would guide their medical decisions. Similarly, in another study, conservative Protestants and those attributing great importance to religion/spirituality had a lower likelihood of engaging in advance care planning (Garrido et al., 2013)
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From page 149... ...
. In this study, religious characteristics were not significantly associated with the likelihood of having an advance directive or do-not-resuscitate order.
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From page 150... ...
. The fact that racial and ethnic minority individuals are less likely to use advance directives or choose hospice care has been noted in numerous studies in different population groups (Johnson et al., 2008; Ko and Berkman, 2010; Ko and Lee, 2013; Muni et al., 2011; Phipps et al., 2003; Waite et al., 2013; Zaide et al., 2013)
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From page 151... ...
his or her [advance care planning] ." A relative lack of advance care planning is seen among black, Hispanic, and Asian patients across socioeconomic groups.
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From page 152... ...
African Americans As noted, African Americans are less likely than white non-Hispanics to express any treatment wishes or to have written advance care planning documents. Compared with whites, they also are more likely to report inadequate or problematic communication with physicians (Trice and Prigerson, 2009)
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From page 153... ...
bThe National Hospice and Palliative Care Organization (NHPCO) reports Hispanic ethnicity separately from race.
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From page 154... ...
In another study, 71 percent of hospitalized Latinos had not had a discussion about advance directives with clinical personnel (Fischer et al., 2012)
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From page 155... ...
. Some patients may simply need more information about advance directives, the advance care planning process, and hospice and palliative care options (Johnson et al., 2008; Wicher and Meeker, 2012; Zaide et al., 2013)
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From page 156... ...
report, approximately 90 million people have low health literacy. As a result, they would be likely to have significant difficulty navigating the health care system and/or completing a range of tasks key to self-managing complex chronic conditions successfully.
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From page 157... ...
. ELEMENTS OF GOOD COMMUNICATION IN ADVANCE CARE PLANNING Elements of good communication in advance care planning include open, clear, and respectful communication between clinician and patient; good communication with families and health care agents; and shared decision making and patient-centered care.
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From page 158... ...
Authors of the NCI monograph point out the interrelationships among these goals and the variability in information about each of them. After-death interviews with 205 families of adult decedents included several questions related to advance care planning.
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From page 159... ...
Walling and colleagues (2008) identify the following reasons for a lack of the effective clinician-patient communication needed for advance care planning: • reluctance to give patients bad news, with doctors' physiological responses to breaking bad news showing that it is stressful for them to do so; • physicians' avoidance of discussions of negative prognoses because of some combination of uncertainty and not wanting to engender hopelessness; • lack of evidence about the best timing for discussions of future treatment options and the above-noted changing concerns of pa tients over the course of illness that may warrant repeat discussions; • reluctance on the part of patients to discuss these matters; and • time constraints and distractions (pagers, for example)
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From page 160... ...
. Often family members and health care agents do not understand, have not been made aware of, or cannot accept their loved one's serious prognosis (see also the discussion of good communication with families and health care agents below)
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From page 161... ...
These treatment decisions can be fraught with uncertainty and are often clouded by a fear of death. Such distress is known to be highly prevalent among cancer patients in particular, with up to 60 percent of selected populations acknowledging emotional difficulties (Carlson et al., 2010, 2012; Gao et al., 2010; Zabora et al., 2001)
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From page 162... ...
. Because the nurses and physician assistants also reported more comfort with psychosocial talk, the authors of this study suggest that the differences across professions in responding to patient emotion "could have important implications for the design of future oncology care teams" (p.
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From page 163... ...
. These findings parallel the goals of palliative care, with its attention to body, mind, and spirit, and of patient-centeredness, which encompasses "compassion, empathy, and responsiveness to the needs, values, and expressed preferences of the individual patient" (IOM, 2001, p.
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From page 164... ...
.28 Physicians have avoided such conversations for various reasons -- perhaps an unwillingness to reveal the limits of medical knowledge; a desire to avoid causing patients and families undue distress; or, as discussed above, concern about causing a loss of hope. Avoiding these conversations may be misguided, however, because it denies families and health care agents the opportunity to prepare emotionally and logistically for their loved one's death (Apatira et al., 2008; Evans et al., 2009, p.
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From page 165... ...
Sharing information during such discussions increases trust in the physician. In addition, having this information allows health care agents to better support the patient and other family members, gives them time to prepare to make difficult life support decisions, and allows time to say good-bye and prepare for possible bereavement (Apatira et al., 2008; Evans et al., 2009)
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From page 166... ...
. This evolution in thinking has occurred in recent decades with respect to patient-clinician communication around care decisions broadly and is particularly relevant in the context of advance care planning.
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From page 167... ...
Facilitators include clinicians providing sufficient, realistic information; presenting choices; and using tools to aid patients in decision making. How Patients Make Decisions Advance care planning is founded on the expectation that people, once presented with evidence and facts, will make rational choices based on wellestablished views and preferences (Swindell et al., 2011)
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From page 168... ...
Advance care planning is an example of an action that has fairly steep immediate costs (contemplation of one's mortality and the possibility of being unable to make decisions) and benefits that may appear only theoretical.
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From page 169... ...
. Patients were randomly assigned to be presented with one of three advance directives that differed only in their embedded default options.
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From page 170... ...
Many of these tools have been tested and used in the palliative care setting or with cancer patients, and many of them apply to a single decision, such as whether to place a feeding tube in a cognitively impaired patient. Even an apparently simple open-ended question such as "What is your understanding of your illness?
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From page 171... ...
In another recent study involving 120 patients with metastatic cancer who were no longer receiving curative therapy (55 intervention patients, 65 control TABLE 3-5 Effects of Video Materials on Health Care Decisions Among Selected Audiences Video Content Result Audience Patient with advanced Proportion choosing comfort General population over dementia care* increased from 50% to age 40 (Deep et al., 2010)
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From page 172... ...
of 1996 regulations, for example, by using Internet-based registries or electronic personal health records. • Develop health care and community collaborations to promote advance care planning and the completion of advance directives
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From page 173... ...
Physician Orders for Life-Sustaining Treatment The POLST paradigm is an approach to advance care planning designed to ensure that seriously ill or frail patients can choose the treatments they want or do not want and that their wishes are documented and will be honored in an emergency (National POLST, 2012a)
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From page 174... ...
The second step entails retrieving and reviewing completed advance directives and prior do-not-resuscitate and/or POLST forms; the third, determining the patient's capacity to make POLST decisions; and the fourth, educating the decision maker about POLST. A conversation or series of conversations between the patient and trained clinicians helps define the patient's values, beliefs, and goals for care that will drive the choice of interventions.
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From page 175... ...
. Both advance directives and the POLST form are helpful advance care planning documents for communicating patient wishes when appropriately used.
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From page 176... ...
Like advance directives, POLST forms allow patients to choose a range of intensities of care, from comfort measures only to full treatment, and to indicate whether they want emergency medical services personnel to attempt resuscitation. In one study of more than 700 patients with POLST in place, 42 percent specified comfort measures only, 47 percent specified limited interventions, and 12 percent specified full treatment (Hickman et al., 2010)
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From page 177... ...
Fewer than 10 percent of nursing homes reported any difficulties in following the POLST orders or having emergency personnel follow them; however, problems that reportedly did arise with more frequency included • difficulty in retrieving original POLST forms from other facilities (62 percent of respondents)
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From page 178... ...
These efforts are intended to provide education about the program, especially how the POLST form differs from conventional advance directives; to obtain consumer and professional input; and to build momentum for statewide adoption (examples include the efforts of New York, described at http://www.compassion andsupport.org, and those of the Massachusetts Department of Public Health [2011]
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From page 179... ...
But the POLST form cannot be viewed as "simply another form to be completed by the health care professional, sepa rated from the context of the advance care planning that is essential to the POLST paradigm" (Rodgers and Picchi, 2013, p.
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From page 180... ...
. An early review of Respecting Choices describes six ways in which this program differs from conventional advance care planning initiatives, which help account for its success in achieving care in greater accord with patient wishes: • It treats advance care planning as an ongoing process, not as an event designed to produce a product.
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From page 181... ...
. The LaCrosse initiative has been used as a model for advance care planning programs for specific settings and populations, such as nursing homes (in der Schmitten et al., 2011)
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From page 182... ...
The forms can also be stored or linked in electronic health records. Thus, the forms and sup porting documentation are accessible regardless of whether an electronic health record is in use.
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Some of the other diverse and innovative ways in which clinicians and institutions are using electronic means to support advance care planning are described in Table 3-7. Currently, however, there are some gaps in practice.
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From page 184... ...
Thus far, the data standards related to advance care planning have been minimal, applying only to hospital patients aged 65 and older, but the evolution of meaningful use offers possibilities for expansion in various core areas, such as patient education and patient engagement. As noted earlier in this chapter, the ACA's meaningful use provisions for electronic health records do not require, and the major commercial electronic health records do not provide for, robust documentation of advance care planning, including advance directives, POLST, or information about designation of and contact information for a health care agent.
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From page 185... ...
loss of capacity to make medical decisions. • The purpose of the conversation at this point is to help normalize the advance care planning process by starting it early, to identify a health care agent, and to obtain guidance in the event of a rare catastrophic event.
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: • Members of the care team can participate in these discussions, which should also include the designated health care agent.
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Much less research has been conducted on the effectiveness of more thorough advance care planning conducted over time and tailored to immediate decisions as needed, as in the life cycle model de
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Specific research needs include investigation into the effectiveness of strategies for advance care planning (versus advance directives) and their effects on achieving concordance with patients' informed preferences and quality of care.
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From page 189... ...
Because the default mode of treatment is acute care in the hospital, however, a higher prevalence of advance care planning and medical orders will be more likely to achieve patient preferences (Billings, 2012; Mack et al., 2010b; Wright et al., 2008)
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Professional societies and other organizations that establish quality standards should develop standards for clinician patient communication and advance care planning that are measur able, actionable, and evidence-based. These standards should change as needed to reflect the evolving population and health system needs and be consistent with emerging evidence, methods, and technologies.
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2010. Service delivery innovation profile: Community-wide education, trained facilitators, and improved processes lead to more advance care planning, consistency between plans and end-of-life decisions, and low care costs.
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2012. Advance care planning: Ensuring your wishes are known and honored if you are unable to speak for yourself, critical issue brief.
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2006. Integrating POLST into palliative care guidelines: A paradigm shift in advance care planning in oncology.
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2012a. Racial and ethnic differences in advance care planning: Identifying subgroup patterns and obstacles.
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2010. Advance care planning: Know your choices, share your wishes.
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2010. The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial.
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2013. A randomized controlled trial of a cardiopulmonary resuscita tion video in advance care planning for progressive pancreas and hepatobiliary cancer patients.
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2007. Outcomes after hematopoietic stem-cell transplantation for hematologic malignancies in patients with or without ad vance care planning.
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2009. Barriers to advance care planning in chronic obstructive pulmonary disease.
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2008. Advance directives and advance care planning: Report to Congress.
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2007. Advance directives in the cardiac care unit.
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2013. Pediatric advance care planning: A systematic review.
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1999. A new model of advance care planning: Observations from people with HIV.
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2009. Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children.
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2012. Advance care planning in COPD.
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From page 206... ...
2007. Differences in the quality of the patient physician relationship among terminally ill African-American and white patients: Impact on advance care planning and treatment preferences.
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2010. Uncertainty about advance care planning treatment preferences among diverse older adults.
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2008a. Overcoming educa tional barriers for advance care planning in Latinos with video images.
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2013. Multiple locations of advance care planning documentation in an electronic health re cord: Are they easy to find?
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2010. Documentation of advance care planning for community-dwelling elders.
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From page 211... ...
.36 Patients and families need good counseling so they understand the specific end-of-life quandaries raised by heart failure. These include the disease's unpredictability and the considerable risk of sudden death, which heightens the need to designate a health care agent and specify the circumstances under which permanent pacemakers or defibrillators should be deactivated (Shah et al., 2013)
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From page 212... ...
The health system's management was sufficiently encouraged by this study's effectiveness in recruiting patients and achieving completion of advance directives to expand training in the model, improve the visibility of advance care planning information in the electronic health record, and continue implementation efforts. Chronic Obstructive Pulmonary Disease (COPD)
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From page 213... ...
. Communication about care planning typically occurs in the crisis situation of an intensive care unit rather than in the primary care physician's office, with each discipline believing the conversation is someone else's responsibility (Gott et al., 2009)
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From page 214... ...
. Guidelines from the National Comprehensive Cancer Network and the National Consensus Project for Quality Palliative Care recommend that physicians have an advance care planning discussion with any patients who have "incurable" cancer and an expected life span of less than 1 year (Bomba and Vermilyea, 2006; Dahlin, 2013; NCCN, 2013)
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From page 215... ...
lack decision-making capacity, and decisions about their care eventually end up being made by their health care agents or surrogates (Sessums et al., 2011)
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From page 216... ...
. By contrast, a study of 323 nursing home residents found that when health care agents understood the patient's poor prognosis and the clinical complications typical in advanced dementia, they were much less likely to authorize burdensome interventions, such as hospitalization, emergency room visits, tube feeding, or intravenous therapy (Mitchell et al., 2009)
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From page 218... ...
Must Fill Out Patient (If patient lacks capacity, must check a box below) Health Care Representative (legally appointed by advance directive or court)
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From page 219... ...
The following sections must be polstreg@ohsu.edu completed: • Patient's full name Oregon POLST Registry 3181 SW Sam Jackson Park Rd. • Date of birth Mail Code: CDW-EM • MD / DO / NP / PA signature Portland, Or 97239 • Date signed Updating POLST: A POLST Form only needs to be revised if patient treatment preferences have changed.
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