Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life (2015) / Chapter Skim
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2 The Delivery of Person-Centered, Family-Oriented End-of-Life Care
2 The Delivery of Person-Centered, Family-Oriented End-of-Life Care
Pages 45-116
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From page 45... ...
This chapter examines the ways in which health care providers manage that process. Evidence shows that -- regardless of whether curative treatments are also undertaken -- a palliative approach often offers the best chance of maintaining the highest possible quality of life for the longest possible time for those living with advanced serious illness.
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From page 46... ...
Next is an examination of palliative care, including hospice, as an established approach to providing the best possible quality of life for people of all ages who have an advanced serious illness or are likely approaching death. The chapter then looks at efforts to measure and report on the quality of care near the end of life, and suggests a set of core quality components.
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From page 47... ...
Some of the major physical and psychological symptoms people face toward the end of life are identified in Approaching Death in a list that remains relevant today (IOM, 1997, pp.
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From page 48... ...
Box 2-1 highlights another important challenge noted also in Chapter 1: many elderly people with advanced serious illnesses have dementia or cognitive impairments. Providers of Care Near the End of Life The health care institutions most involved in care near the end of life are hospitals, nursing homes, long-term acute care facilities, home health agencies, and hospices, as well as outpatient clinical settings.
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From page 49... ...
The Importance of Primary Care Primary care1 plays a crucial role for many people with advanced serious illnesses because primary care clinicians often are best positioned to coordinate the patient's health services across multiple specialties, ensure continuity of care across the patient's life span, and understand the capabili 1 n A IOM report defines primary care as "the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients, and practicing in the context of family and community" (IOM, 1996, p.
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From page 50... ...
In addition to treatment of one or more advanced serious illnesses and their comorbidities, their patients variously may need assistance in advance care planning and health care decision making, counseling, referrals to hospice and specialty palliative care, referrals to other relevant specialists and to social service and home health agencies, and coordination of care. Care coordination, including communication among all providers and between providers and the patient and family, is especially crucial because care near the end of life can involve many health professionals, multiple chronic conditions, and rapidly emerging complex problems with medical and social dimensions.
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From page 51... ...
-Medicare database3 for 1992-2002 found that advanced lung cancer patients who were seen by their usual primary care provider during their final hospitalization had 25 percent reduced odds of admission to critical care units (Sharma et al., 2009)
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From page 52... ...
The Problem of Burdensome Transitions Patients often experience multiple transitions near the end of life, and they suffer the consequences of the resultant discontinuities in care. Medication errors, disruptions in care planning, and failures to coordinate care all are implicated in poorly managed transitions between care settings, including between hospitals and nursing homes or private homes.
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From page 53... ...
Similarly, an intervention designed to encourage patients and family caregivers to play a more active role in care transitions led to lower readmission rates at both 30 and 90 days in a large integrated care delivery system in Colorado (Coleman et al., 2006)
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From page 54... ...
. As end-of-life care moves away from hospitals and toward nursing homes and individual homes, the quality of care near the end of life in nonhospital settings becomes more important (Flory et al., 2004)
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From page 55... ...
, in comments submitted to the committee online by members of the public, and in subsequent chapters of this report. The IOM Committee on Improving the Quality of Cancer Care recently underscored the importance of patient preferences, saying, "In the setting of advanced cancer, the cancer care team should provide patients with end-of-life care consistent with their needs, values, and preferences" (IOM, 2013, p.
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From page 56... ...
Only the last place, the hospice, appeared willing or able to provide care and comfort to a man who was obviously at the end of his life. After he had been in the hospital in Maine for 12 days, a social worker phoned one morning to say an ambulance was on its way to take him to a hospital in Haverhill, Massachusetts, where his medications would be "ad justed." .
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From page 57... ...
. A few days after Christmas, when it was evident that my father wasn't going to improve and neither could he stay there, a thoughtful and efficient social worker sug gested a hospice center also in Haverhill.
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From page 58... ...
Interdisciplinary palliative care teams assess and treat symptoms, support decision-making and help match treatments to informed patient and family goals, mobilize practical aid for patients and their family caregivers, iden tify community resources to ensure a safe and secure living envi ronment, and promote collaborative and seamless models of care across a range of care settings (i.e., hospital, home, and nursing home) " (Meier, 2011, p.
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From page 59... ...
who care for this population but are not certified in palliative care; and • specialty palliative care, delivered by health care professionals who are palliative care specialists, such as physicians who are board certified in this specialty, palliative-certified nurses,6 and palliative care-certified social workers, pharmacists, and chaplains. Specialty palliative care currently is most commonly hospital based and offered as a consultative service, although growth recently has been seen in specialty palliative care services in outpatient settings, at home, in nursing homes, and in long-term acute care facilities (CAPC, 2011; NHPCO, 6 alliative nurses are certified in one of seven certification programs, such as programs for P advanced certified hospice and palliative nurse and certified hospice and palliative nursing assistant (NBCHPN®, 2013)
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From page 60... ...
Elderly people who communicate in Asian languages, for example, have been found to have difficulty finding nursing homes where they can communicate with staff members (Vega, 2014)
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From page 61... ...
, in A National Framework and Preferred Practices for Palliative and Hospice Care Quality, defines hospice as "a service delivery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also sup ports family members coping with the complex consequences of illness, disability, and aging as death nears" (NQF, 2006, p.
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From page 62... ...
Hospice programs with the greatest use of volunteers had the highest overall ratings for quality of care. Using volunteers can also increase access to hospice care in some circumstances.
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From page 63... ...
With palliative care, [p] atients are able to remain in their homes as a consequence of better fam ily support, care coordination, and home care and hospice referrals; more hospital admissions go directly to the palliative care service or hospice program instead of a high-cost intensive care unit (ICU)
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From page 64... ...
: • increases in the numbers and needs of elderly Americans, • recognition of the numbers and needs of family caregivers, • greater prevalence of chronic diseases, and • public attention to controversies and legal cases regarding the right to die and assisted suicide (Meier, 2010)
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From page 65... ...
See Appendix C Illustrative Palliative Care Processes The MD Anderson Cancer Center's Supportive and Palliative Care Service illustrates how palliative care can function in hospital and outpatient settings.
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From page 66... ...
The Center to Advance Palliative Care convened a consensus panel to develop checklists for identifying these patients. The panel determined that every hospital, including specialty hospitals, should identify patients at high risk for unmet palliative care needs using a screen ing process on admission that looks for • potentially life-limiting or life-threatening condition; and a • ve primary criteria of (1)
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From page 67... ...
was issued is the emergence of several sets of guidelines for pediatric palliative care. These include guidelines of the National Hospice and Palliative Care Organization (NHPCO, 2009)
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From page 68... ...
Since 2005, children's hospitals, in particular, have developed pediatric palliative care teams for children with long-term advanced serious illness and/or a broad array of symptoms. The pediatric palliative care approach combines the continuity of care and patient-centeredness usually associated with primary care with highly specialized clinical services.
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From page 69... ...
Palliative Care in Nonhospital Settings Although most palliative care programs are hospital based, the palliative approach ideally is available as well wherever patients with serious advanced illness are, including in long-term care facilities, in outpatient clinical settings, and at home. A literature review focused on four "sentinel articles" found that palliative care outside inpatient settings can enhance patient satisfaction; improve symptom control and quality of life; reduce health care utilization; and, in a population of lung cancer patients, lengthen survival (Rabow et al., 2013)
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From page 70... ...
Palliative care does not always have to be provided by specialist clinicians. In fact, to meet the palliative care needs of all people with advanced serious illness who are likely approaching death, palliative care precepts must be integrated across the continuum of care and generally embraced by clinicians who care for this population.
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From page 71... ...
. In addition to palliative medicine specialists, palliative nurses, social workers, and chaplains, team members may include, for example, pharmacists, dietitians or nutritionists, physical therapists, occupational therapists, psychotherapists, speech-language pathologists, and others such as art or music therapists and child life specialists (Adams et al., 2011; American Occupational Therapy Association, 2011; American Society of Health System Pharmacists, 2002; Cruz, 2013; Hebert et al., 2011; NASW, 2013, 2014; Pollens, 2004; Puchalski et al., 2009; Vitello, 2008)
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From page 72... ...
Evidence for the Effectiveness of Palliative Care As noted, a growing evidence base supports the effectiveness of palliative care for those nearing the end of life. A study of 524 dying patients at five VA medical centers and affiliated nursing homes and clinics in 20062007 showed that those who received inpatient palliative care consultations had significantly better outcomes in five of six domains studied: information and communication, access to home care services, emotional and spiritual support, well-being and dignity, and care around the time of death (Casarett et al., 2008)
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From page 73... ...
In a randomized controlled trial of 512 patients hospitalized with life-limiting diseases in Denver, Portland (Oregon) , and San Francisco in 2002-2003, palliative care patients, compared with "usual care" patients, had greater satisfaction with communication and the care experience and fewer critical care unit admissions.
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From page 74... ...
And in a 10-item family satisfaction survey involving bereaved family members of nearly 1,600 people who died of chronic diseases in 2000, overall satisfaction was found to be better in home hospices than in hospitals, nursing homes, and home health agencies (Teno et al., 2004) (see Table 2-1)
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From page 75... ...
(%) Patient did not receive enough help with pain 19 32 43 18 Patient did not receive enough help with shortness of breath 19 24 38 26 Patient did not receive enough emotional support 52 56 70 35 Physician did not satisfy family desire for contact 52 31 23 14 Family had enough contact with physician but had concerns 27 18 27 18 about physician communication Patient was not always treated with respect 20 32 16 4 Family had concerns about own emotional support 38 36 46 21 Family had concerns about having enough information about 50 44 32 29 what to expect while patient was dying Staff did not know enough about patient's medical history 15 20 8 8 Overall quality of care was excellent 47 42 47 71 SOURCE: Teno et al., 2004.
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From page 76... ...
Various interventions have been implemented and evaluated to identify aspects of quality care near the end of life that lead to positive outcomes and patient and family satisfaction. A systematic review of 23 studies of interventions to improve continuity of care, care coordination, or transitions between settings of care for people with serious illness found the best, yet moderate, evidence for improvement in patient or family satisfaction; evidence generally was weak for other outcomes, including patient or family quality of life, caregiver burden, and utilization of health care resources (Dy et al., 2013)
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From page 77... ...
Current Quality Measurement and Reporting Efforts In the mid-2000s, a group building on efforts of the Robert Wood Johnson Foundation's Critical Care End-of-Life Peer Workgroup used a consensus process to develop 18 proposed measures for assessing the quality of palliative care (Mularski et al., 2006)
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From page 78... ...
. The NCP is a collaborative effort of the American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, National Association of Social Workers, National Hospice and Palliative Care Organization (NHPCO)
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From page 79... ...
The study found further that critical care units addressed goals of care only about half the time. High scores were obtained for pain assessments, pain treatment, and treatment for breathing difficulties (dyspnea)
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From page 80... ...
survey assesses decision making using a postdeath survey of the bereaved family, there is no NQF-endorsed measure of shared decision making that asks the seriously ill person about his/her perceptions of the quality of care and the quality of shared decision making. Current NQF-endorsed measures also do not adequately measure the experience of caregiving, advance care planning, concordance with patient preferences, burdensome transitions, or the timeliness of referral to palliative care services.
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From page 81... ...
. In nursing homes, place of death (in the nursing home or in the hospital)
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From page 82... ...
Experience suggests the great difficulty of devising standards that take into account factors as diverse as staff composition, clinical performance, provision of ancillary and supporting services, and quality improvement efforts. Overall, any effort to recognize high-quality care near the end of life faces formidable methodological challenges.
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for failure to report on quality measures endorsed by a "consensus-based entity"15 (CMS, 2013b; see also Meier, 2011, p.
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From page 84... ...
As of May 2014, 66 programs had received certification under this program (Joint Commission, 2014c) .16 In addition, a task force of the American Academy of Hospice and Palliative Medicine and an advisory group of the Hospice and Palliative Nurses Association have begun collaborating to identify a core set of evidence-based performance measures that would apply to all hospice and palliative care programs across care settings.
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From page 85... ...
Core components would apply to care near the end of life of every type, provided in every setting. They would include not only hospice and palliative care but also the usual care received by people with advanced serious illness who likely are approaching death, which may be provided by primary care physicians, physician specialists, nurses, and other personnel in hospitals, nursing homes, assisted living facilities, outpatient clinics, private homes, and other settings.
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From page 86... ...
Offer referral to hospice if the patient People who meet the hospice eligibility has a prognosis of 6 months or less criteria deserve access to services designed to meet their end-of-life needs. Management of care and direct contact Care of people with serious illness may with patient and family for complex require specialist-level palliative care situations by a specialist-level palliative physician management, and effective care physician physician management requires direct examination, contact, and communication.
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From page 87... ...
. THE PROBLEM OF PROGNOSIS The problem of prognosis -- establishing the life expectancy of a patient with an advanced serious illness or medical condition who is likely approaching death -- is important for several reasons.
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From page 88... ...
. • may have legal implications, affecting the preparation and imple mentation of advance directives17; and • affects eligibility for hospice care under the Medicare Hospice Benefit (see Box 2-6)
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From page 89... ...
describes efforts to develop clinical forecasting models, especially for acute myocardial infarction, coma, pediatric intensive care, and critical care. The discussion emphasizes several limitations of such models, some of which are technical: statistical limitations, inherent imperfections, and inadequate accounting for disease specificity and the effects of interventions.
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From page 90... ...
X Nursing home residence X Applicability of two or more X noncancer hospice guidelines Current tobacco use X Body mass index X Pulse rate X White blood count X X Platelet count X Lymphocyte count or lymphopenia X Hypercalcemia X C-reactive protein X Urea X Bathing X Walking several blocks X Pushing/pulling large objects X Managing money X Physician's survival prediction (in X weeks) NOTES: CARING = Cancer, Admissions ≥2, Residence in a nursing home, Intensive care unit admit with multiorgan failure, ≥2 Noncancer hospice Guidelines; HRS = Health and Retirement Study; PaP = Palliative Prognostic; PIPS = Prognosis in Palliative Care Study.
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From page 91... ...
With regard to non-disease-specific models, a systematic review of 16 indices predicting mortality risk in people over age 60 in community, hospital, or nursing home settings "identified several high-quality prognostic indices." However, the authors found that "there is insufficient evidence at this time to recommend the widespread use of prognostic indices in clinical practice" (Yourman et al., 2012, p.
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From page 92... ...
. FAMILY CAREGIVERS Family caregivers (with family defined broadly; see the guiding principles in Box 1-3 in Chapter 1)
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From page 93... ...
Information about the number and responsibilities of family caregivers is not available specifically for the population nearing the end of life. This report uses the term "family caregivers" to describe people in this role; other terms used include "informal caregivers," "carers," "primary caregivers," and "volunteer caregivers." Whatever the term, these individuals often exhibit extraordinary commitment, provide incalculable value, and face significant burdens in carrying out the caregiver role.
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From page 94... ...
. As discussed earlier in this chapter, new models of home and community health care delivery and improved communication technologies are making that choice increasingly possible; however, adequate support for family caregivers remains an unmet need.
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From page 95... ...
Duration of caregiving 55% Proportion of employed workers serving as caregivers who have been doing so for 3 years or longer (Mendes, 2011) Worker absenteeism 6.6 days Employed family caregivers' average annual number of days of employed work lost as a result of caregiving (Witters, 2011)
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From page 96... ...
However, research on family caregivers' roles, needs, behavior, health risks, success in performance, interaction with professional members of the health care team, and use of respite care and other support services is not highly developed. Research on family caregiving remains sparse, perhaps reflecting its lack of visibility as compared with the services offered by health care professionals.
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From page 97... ...
. An IOM committee investigating health care workforce needs for an aging America took note of the importance of integrating family caregivers into health care teams and providing them with better training.
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From page 98... ...
Appendix F suggests the need for research in the following areas for children near the end of life: • comparative effectiveness studies of different approaches to symp tom management and bereavement support; • analyses of care received in emergency departments, outpatient settings, and hospices and through home health agencies; • cohort studies examining the effect of palliative care on outcomes and on the patient experience; and • studies of how best to staff, manage, and finance hospital-based pe diatric palliative and community-based pediatric hospice services. A general lack of investment in research on palliative care is identified in a review of the palliative care landscape referenced earlier in this chapter (Meier, 2011)
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From page 99... ...
Trials also typically ignore family-related factors, including the role of family caregivers. In general, moreover, clinical trials assess only the efficacy of an intervention under carefully controlled conditions, not its effectiveness in the real world.
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From page 100... ...
. Growth of Specialty Palliative Care The years since Approaching Death (IOM, 1997)
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From page 101... ...
. Interdisciplinary Teams for Palliative Care Besides physician specialists in hospice and palliative medicine, members of palliative care interdisciplinary teams often include specialty advanced practice nurses and registered nurses, social workers, chaplains, pharmacists, rehabilitation therapists, direct care workers, and family members (Adams et al., 2011; American Occupational Therapy Association, 2011; American Society of Health System Pharmacists, 2002; Brumley and Hillary, 2002; Cruz, 2013; Hebert et al., 2011; Meier, 2011; NASW, 2013, 2014; NQF, 2006; Pollens, 2004; Puchalski et al., 2009; Vitello, 2008)
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From page 102... ...
Such patients and their families may further require the involvement of interdisciplinary teams of professionals specifically trained in palliative care. Such care teams -- whether available in hospitals, long term acute care facilities, nursing homes, hospices, clinics, or patients' homes -- combine services and expertise to meet the broad needs of patients and families.
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From page 103... ...
Health care delivery organizations should take the following steps to provide comprehensive care: • All people with advanced serious illness should have access to skilled palliative care or, when appropriate, hospice care in all set tings where they receive care (including health care facilities, the home, and the community)
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From page 104... ...
2010. A strategy to advance the evidence base in palliative medicine: Formation of a palliative care research cooperative group.
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2011. Massachusetts' Pediatric Palliative Care Network: Suc cessful implementation of a novel state-funded pediatric palliative care program.
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2008. Improving palliative care in nursing homes.
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From page 107... ...
Journal of Palliative Medicine 16(4)
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2013. Pediatric palliative care programs in children's hospitals: A cross-sectional national sur vey.
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Journal of Palliative Medicine 13(10)
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American Journal of Hospice and Palliative Medicine 28(4)
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From page 111... ...
Journal of Palliative Medicine 14(11)
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From page 112... ...
2006. Proposed quality measures for palliative care in the critically ill: A consensus from the Robert Wood Johnson Foundation Critical Care Workgroup.
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Palliative Medicine 13:37-44. PCORI (Patient-Centered Outcomes Research Institute)
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The PEACE project: Identification of quality measures for hospice and palliative care. Journal of Palliative Medicine 13(12)
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From page 115... ...
Journal of Palliative Medicine 16(6)
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From page 116... ...
Journal of Palliative Medicine 14(1)
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