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A Need for More, Better, and Earlier Conversations With Cancer Patients About Goals of Care

Rachelle Bernacki, MD, MS; and Ziad Obermeyer, MD, MPhil
A recent study of Medicare beneficiaries with poor-prognosis cancers found statistically signicant differences in care utilization between hospice and nonhospice beneficiaries at the end of life.1 While enrolled in hospice, beneficiaries were hospitalized less, received less intensive care, underwent fewer procedures, and were more likely to die at home—consistent with the preference of most patients. In order to realize the benets of hospice, however, a clinician-patient discussion about goals of care— in the context of serious illness—must occur early in patient care.

If end-of-life (EOL) discussions were pharmaceutical agents, they would be blockbusters. EOL discussions result in 37.5% lower costs among patients, and patients with higher costs had worse quality of life in their final week.2 Increasing the practice of early EOL discussions has been proposed as one of 5 key changes that can “bend the cost curve” in oncology care.3 In short, we need more, better, and earlier conversations about goals of care for patients with advanced cancer.

Unfortunately, evidence suggests that EOL conversations occur infrequently, and that even when they do they are inadequate.4 A study to assess psychosocial coping of patients with cancer found that EOL discussions did not occur regularly; indeed, only a third of the population of dying patients reported having discussed EOL issues with their physicians, at 4 months before death on average.5 When these talks did occur, they resulted in less aggressive medical care near death and earlier hospice referrals.5

BARRIERS TO CONVERSATIONS

Why are more, better, and earlier conversations about goals of care not the norm for patients with advanced cancer? Physician discomfort with discussing advance care planning (ACP) is likely a result of inadequate training. This lack of training is a major obstacle to better and more effective discussions.6 Oncologists often need to communicate bad news to patients, but very few oncology training programs instill the essential psychosocial skills required for optimal care of cancer patients and/or their families, and fellows describe signicant gaps in their condence and competence in addressing key EOL issues. Oncologists deliver bad news to patients an average of 35 times a month,7 yet a national survey documented that few oncology trainees report training or mentoring in communication skills such as discussing a prognosis with a patient.8

The outcome? Conversations on patient preferences for future care tend to be short. One study described how physicians’ discussions with patients of advance directives lasted 5.6 minutes.9 According to the study, physicians tend to speak for the majority of the time, and the discussion is usually focused on preferences for technical interventions rather than the patient’s goals for care.9 Because patients’ goals and values are not explored in detail and the physician provides insufficient information and recommendations about the use of technologies in achieving patient goals, decisions may not necessarily reect patients’ true wishes. Since conversations about serious illness care goals are difficult, stressful, and emotionally challenging for both physicians and patients,10 using a structured guide can support clinicians and assure completion of key steps in the conversations.4

Second, evidence suggests that physicians have difficulty formulating and communicating prognosis—a prerequisite for appropriately timed conversations. If providers do not clearly communicate, in an understandable way, that death is approaching, patients will be unable to factor that information into the decisions they make. A national survey found that while 90% of physicians believed they should avoid specifics about prognosis, 57% felt inadequately trained in prognostication.11 Another study, evaluating the accuracy of physician prognostic skills, asked physicians to provide survival estimates of terminally ill patients at the time of hospice referral. Physicians were accurate only 20% of the time and were biased toward overestimation of survival by a factor of 5.3.12 Importantly, patient understanding of prognosis signicantly inuences their decisions about aggressiveness of care. A study of older patients (>75 years) and those with chronic disease (>65 years) indicated that fewer patients that were aware they had a terminal illness sought complicated and invasive treatments.13 The overwhelming majority of patients want to discuss their prognosis with physicians, and inadequate prognostic information is one of the most cited complaint patients and families have about EOL care.14 However, patients often do not receive all the information they need in order to make choices consistent with their values and desires.14

While difficulties with prognostication may be partly responsible for a decrease in the average length of stay in hospice, the use of hospice for the care of terminally ill patients has increased 10-fold—from 158,000 patients in 1985 to over 1.53 million in 2012.15 Fifteen percent of hospice patients are referred in their last week of life, when benets to the patient and family may be limited.15,16 In a recent study, the median length of hospice stay for patients with lung cancer was 4 days.17 However, families feel they receive greater benet from longer lengths of stay in hospice.18 Future efforts to define an “optimal” length of stay in hospice should consider patients’ and families’ perceptions of the benefits that hospice offers.

Timing is also critically important for conversations about goals of care. Choosing the appropriate time for patients with serious illness to have this conversation can have a profound impact on the value of ACP efforts.19 Advance directives that are completed too early or too late can lead to EOL decisions that may not reflect the patient’s values, goals, and preferences. Palliative care specialists practice and support the concept of “just in time” decision making.20 Rather than making final decisions regarding future care and interventions, the goal should be to encourage earlier EOL communication that prepares the patient, his or her family members, and clinicians to make better decisions when questions arise in the future. In this way, “just in time” decision making avoids some of the possible undesirable outcomes of ACP,21 such as premature decisions made without sufficient information.

SYSTEM IMPROVEMENT NEEDED

Building on our understanding of these obstacles, we need to ensure that more goals of care conversations happen, and that they happen at the right time. Making certain of this is critical to promoting the high-value (best for the lowest cost) care that hospice can help provide. To reach this goal, several steps need to be realized.

First, systems need to identify patients at high risk of facing EOL decisions, and then highlight these patients as those who could potentially benet from additional intervention.22 This allows clinicians and institutions alike to target resources such as care management, geriatric, and palliative care consultation to those who most likely need them, rather than being at the whim of the referring clinician, who may or may not be familiar with those resources. However, limited access to specialist palliative care prevents the full realization of its benefits, as a shortage of board-certied physicians in hospice and palliative medicine is a major barrier to access.23

Second, to overcome this shortage, generalist physicians should be trained to develop competencies to practice primary palliative care, with backup and support from palliative care specialists.24 While primary palliative care includes basic discussions about prognosis and goals of treatment, specialist palliative care teams provide assistance with conflict resolution regarding goals or methods of treatment within families, between staff and families, and among treatment teams.24 However, since generalist physicians have noted a lack of training and comfort with conducting early ACP discussions, there is an urgent need to adequately train them to conduct goals-of-care conversations. In the absence of a funded mandate to provide training to generalists to conduct patient-centered conversations about goals of care for the seriously ill, some institutions, particularly accountable care organizations, are investing in training non–palliative care physicians to develop generalist-level palliative care competencies.25 Such resource investment helps insure that all patients have access to palliative care services, and consequently that palliative care specialists can focus on patients with complex needs while direct, basic palliative care services are provided to most patients by generalist physicians.

Finally, it should be easy to find information in the electronic medical record (EMR) about patients’ values, goals, and preferences for care, as well as other key information, including healthcare proxy, Medical Orders for Life-Sustaining Treatments forms, and code status. Currently, in many systems, this vital information is scattered and difficult to find. In order to accelerate improvement, the simple assessment of the presence of ACP information is unlikely to be adequate—indicators of quality of discussion are essential and need to be developed. In addition, making a section in the EMR a “single source of truth” for documentation of patient values and goals-of-care conversations would allow for performance standards to be developed; clinicians and systems would be accountable for the care provided,26 including key indicators related to discussion and documentation of serious illness care goals. To realize the goal of more, better, and earlier discussions with patients about care goals, we should begin by focusing our attention on these 3 areas: 1) education of clinicians; 2) identification of appropriate patients; 3) user-friendly, structured sections in the EMR for recording information; and 4) continuous measurement of performance. EBO
Rachelle Bernacki, MD, MS, is assistant professor of medicine, Harvard Medical School; director of quality initiatives, Dana-Farber Cancer Institute, Department of Psychosocial Oncology and Palliative Care; associate director, Serious Illness Care Program, Ariadne Labs (a joint venture between Brigham and Women’s Hospital and Harvard T. H. Chan School of Public Health), Harvard Medical School Center for Palliative Care, Boston, MA.

Ziad Obermeyer, MD, MPhil, is assistant professor of health care policy, Harvard Medical School; associate faculty, Ariadne Labs (a joint venture between Brigham and Women’s Hospital and the Harvard T. H. Chan School of Public Health); emergency physician, Brigham & Women’s Hospital, Department of Emergency Medicine, Boston, MA.
REFERENCES

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2. Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med. 2009;169(5):480-488.

3. Smith TJ, Hillner BE. Bending the cost curve in cancer care. N Engl J Med. 2011;364(21):2060- 2065.

4. Bernacki RE, Block SD; American College of Physicians High Value Care Task. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994-2003.

5. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673.

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8. Buss MK, Lessen DS, Sullivan AM, Von Roenn J, Arnold RM, Block SD. Hematology/oncology fellows’ training in palliative care: results of a national survey. Cancer. 2011;117(18):4304-4311.

9. Tulsky JA, Fischer GS, Rose MR, Arnold RM. Opening the black box: how do physicians com- municate about advance directives? Ann Intern Med. 1998;129(6):441-449.

10. Szmuilowicz E, el-Jawahri A, Chiappetta L, Kamdar M, Block S. Improving residents’ end- of-life communication skills with a short retreat: a randomized controlled trial. J Palliat Med. 2010;13(4):439-452.

11. Iwashyna TJ, Christakis NA. Attitude and self-reported practice regarding hospice referral in a national sample of internists. J Palliat Med. 1998;1(3):241-248.

12. Christakis NA, Lamont EB. Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. BMJ. 2000;320(7233):469-472.

13. Gramelspacher GP, Zhou XH, Hanna MP, Tierney WM. Preferences of physicians and their patients for end-of-life care. J Gen Intern Med. 1997;12(6):346-351.

14. Hanson LC, Danis M., Garrett J. What is wrong with end-of-life care? opinions of bereaved family members. J Am Geriatr Soc. 1997;45(11):1339-1344.

15. NHPCO’s facts and figures: hospice care in America. 2013 edition. National Hospice and Palliative Care Organization website. http://www .nhpco.org/sites/default/files/public/Statis- tics_Research/2013_Facts_Figures.pdf. Accessed March 13, 2015.

16. Ferrell BR. Late referrals to palliative care. J Clin Oncol. 2005;23(12):2588-2589.

17. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.

18. Rickerson E, Harrold J, Kapo J, Carroll JT, Casarett D. Timing of hospice referral and families’ perceptions of services: are earlier hospice referrals better? J Am Geriatr Soc. 2005;53(5):819-823.

19. Billings JA, Bernacki R. Strategic targeting of advance care planning interventions: the Goldilocks phenomenon. JAMA Intern Med. 2014;174(4):620-624.

20. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256-261.

21. Billings JA. The need for safeguards in advance care planning. J Gen Intern Med. 2012; 27(5):595-600.

22. Smith G, Bernacki R, Block SD. The role of palliative care in population management and accountable care organizations [published online February 27, 2015]. J Palliat Med. doi:10.1089/ jpm.2014.0231.

23. Lupu D; American Academy of Hospice and Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage. 2010;40(6):899-911.

24. Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med. 2013;368(13):1173-1175.

25. Bernacki RE, Block SD. Serious illness communications checklist. Virtual Mentor. 2013; 15(12):1045-1049.

26. Teno JM, Gozalo PL. Quality and costs of end-of-life care: the need for transparency and accountability. JAMA. 2014;312(18):1868-1869.
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