AREAS OF CONFUSION IN ONCOLOGY
'Futile Care': What to Do When Your Patient Insists on Chemotherapy That Likely Won’t Help
By James Khatcheressian, MD1, Sara Beth Harrington, MD2, Laurel J. Lyckholm, MD3, Thomas J. Smith, MD4 |
July 1, 2008
1Assistant Professor of Medicine
2Assistant Professor of Internal Medicine and Palliative Care
3Associate Professor of Oncology and Palliative Care
4Professor of Medicine and Chair, Division of Hematology/Oncology and the Thomas Palliative Care Program of the Massey Cancer Center of Virginia, Commonwealth University Richmond, Virginia
Do patients expect better outcomes? The increasing effectiveness and lessened toxicity of palliative chemotherapy is well supported by randomized trial data. First-line chemotherapy for NSCLC patients improves survival by several months, relieves symptoms, and improves quality of life compared with best supportive care. Second-line treatment of NSCLC patients with docetaxel(Drug information on docetaxel) vs best supportive care is associated with a significant prolongation of survival (7.0 vs 4.6 months, or a difference of 10 weeks, as well as an increase in 1-year survival, 29% vs 19%), improvements in pain, and less deterioration in quality of life.
Even third-line treatment may improve survival or symptoms, especially with novel, relatively nontoxic oral agents such as erlotinib, which, in one study, improved survival compared to best supportive care from 4.7 to 6.7 months, with improved pain, dyspnea, and physical functioning. Palliative chemotherapy has also increased survival and quality of life in metastatic colorectal and prostate cancer patients.
Patients certainly have fears about giving up state-of-the-art medical care when no other viable treatment options are available. Many patients fear that they will not receive adequate medical services in hospice care, or as one patient stated, entering hospice "felt like I was trading in the Lamborghini of medical care for an old pick-up truck driving down a rutted road."
Some evidence suggests that concurrent palliative or hospice care alongside routine oncology care improves health outcomes, but the data is far from conclusive. The one randomized trial of concurrent hospice care plus usual oncology care vs usual oncology care alone has not yet been published. The group with concurrent care lived slightly longer (not statistically significant), had quality of life preserved longer, used less chemotherapy, and transitioned to hospice enrollment sooner. The clinical care differences modestly favored the concurrent care approach, but the hospice cost was substantial and much higher than the cost of hospitalizations avoided. Proof of efficacy will require rigorous testing, preferably in randomized clinical trials.
A comprehensive review found that randomized trials of decision aids in oncology yielded increased patient knowledge and more involvement in decision-making, and a decision aid for adjuvant therapy of breast cancer (Adjuvant!, available at www.adjuvantonline.org) was recently shown to improve medical decision-making and help low-risk patients avoid unnecessary chemotherapy.
However, obtaining honest and useful information about prognosis and treatment options for patients with metastatic cancer is not easy. For patients with recurrent NSCLC, the National Cancer Institute (NCI) website simply states that "current treatments do not cure the cancer," but does not list the advantages of chemotherapy (the likelihood of improvement in progression-free survival, overall survival, or symptom improvement), the disadvantages (chance of nausea, neuropathy, fatigue), or alternatives such as hospice.
The website for the leading national advocacy group for lung cancer (Lung Cancer Alliance) offers important information about prognosis at diagnosis: "Over 50% of new lung cancer cases will be diagnosed at a very late stage—stage IIIb or IV—and only 5% of them will live for 5 years." But, like the NCI website, there is nothing about prognosis for individual patients, the expected outcomes of treatment, what treatments work and how well, the alternative of palliative care without specific anticancer treatment, how to choose among therapies, or what most patients could reasonably expect.
Not present on any of these websites are needed answers to the most common questions that we as clinicians are asked frequently: What is my chance of cure? Will treatment make my cancer shrink? Will I feel better or worse? What are the main side effects? What are the likely things that will happen to me? Are there nonchemotherapeutic options such as hospice or palliative care? How do people make decisions?
Between 2000 and 2005, advertising dollars targeting patients increased from $2.5 billion to $4.2 billion.[55,56] Indeed, a high percentage of oncology nurse practitioners report patient requests for medications as a result of advertisements. While almost all appeals address effectiveness (for example, the benefit of a particular chemotherapy in progression-free survival), the quality of the educational content is poor overall and may be overshadowed by the psychological appeals found in over half of advertisements. Thus, while direct-to-consumer advertising may be attractive to patients because, in the words of one cancer survivor, it "right[s] the imbalance of power in the relationship between the physician and the patient"," providers may become frustrated by the feeling that they are being cast as villains in sorry confrontations between advertisers and payors."
It is not surprising that physicians respond to their patients—particularly those with whom they share a long-term relationship—with powerful emotions of their own. These can include a personal and professional sense of failure and frustration, guilt, powerlessness against the illness, grief, a need to rescue the patient, or a desire to separate from and avoid patients to escape these feelings. Interestingly, almost one-quarter of physicians will occasionally administer futile chemotherapy to maintain patient hope.
In our experience, hospice clinicians and patients and their families sometimes wish that the patient had enrolled in hospice sooner. According to the website of the National Hospice and Palliative Care Organization, the median length of stay on hospice has declined from 29 days in 1995 to 26 days in 2005, with one-third enrolling in the last week of life and 10% on the last day of life. Late enrollment may not only shortchange patients but also possibly harm their loved ones, since there is evidence that hospice care is associated with a 0.5% lower death risk for the Medicare-age surviving spouse.
Families' perception of late referral is associated with lower satisfaction with hospice care overall. In the most recent and largest study, among those with hospice stays of less than 30 days, 16% of families said they were referred too late. Of note, the perception of being referred too late, but not the actual length of stay, was associated with more unmet needs, lower satisfaction, and more concerns. One study found that patients would have liked palliative care consultation earlier in the course of their disease.
It is unknown whether this view of "too-late" referrals to palliative care and hospice will change with the new relatively nontoxic chemotherapy treatments. Barriers to earlier hospice enrollment include physicians' lack of knowledge of hospice philosophy, services, and patient eligibility requirements. Brickner et al found that 84% of physicians surveyed were unable to identify appropriate hospice diagnoses, and only 12% were aware of the National Hospice Organization Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diagnoses.
Helpful Communication Strategies for Physicians Treating Cancer Patients
Because patients are vulnerable to grasping at slim hopes, oncologists must improve their skills in helping patients think clearly about the appropriateness of chemotherapy (Table 2).[69,70] Inaccurate treatment information can lead to poor health outcomes, including a "bad" death—defined as death in an intensive care unit, on a ventilator, or with multiple hospitalizations and emergency room visits—and overly optimistic patients fare no better or worse than those who are more realistic.[71,72]
Being honest does not destroy hope, but how one delivers information does matter. For patients with incurable metastatic cancer, physician behavior rated as most beneficial to maintaining hope included offering the most up-to-date treatment, appearing knowledgeable about the patient's cancer, and assuring that pain will be controlled. No data show that hope can be taken from patients, as was once thought, or that patients are harmed by carefully provided information.[74,75] As the Education for Physicians on End-of-Life Care for Oncologists (EPEC-O) curriculum states, "Information carefully shared is a gift to the patient and the family who want it and minimizes the risk that patients will distrust the cancer care team."
|Physicians treating terminally ill patients should |
|• ||Confer with a colleague |
|• ||Find out how much the patient wants to know |
|• ||Discuss hospice early |
|• ||Talk with patients honestly, avoiding euphemisms for death and dying |
|• ||Put things in writing |
|• ||Encourage questions and make time to answer them |
|• ||Address symptom management |
|• ||Get training to discuss end-of-life issues |
Clearly a number of factors are at play when patients insist on receiving chemotherapy that their physicians feel will provide no net benefit to survival or symptom improvement. It is often emotionally difficult and time-consuming to address these issues directly. The conundrum for today's oncologist is that it may be easier to avoid the discussion altogether and move on to third- or fourth-line chemotherapy—the patient and family may be less upset, side effects may be minimal, and this approach takes less of the physician's time.
Excellent communication skills are vital; unrealistic patient expectations may be prevented by good communication at the beginning of palliative treatment, by clearly and specifically outlining the goals of therapy, the expected benefits of therapy, and alternatives to cytotoxic chemotherapy such as hospice. The following practical steps should be used by every oncologist in the palliative treatment setting:
• Don't Go It Alone—Finding a trusted colleague with whom to confide can be part of a plan to prevent isolation, improve objectivity, and avoid burnout.
• Ask the Patient—At the very least, finding out how much a patient wants to know and then providing that information is required of all clinicians.
• Discuss Hospice Early—Clinicians often struggle with initiating discussions about shifting treatment goals and, in particular, transitioning to palliative care. Patients may respond with denial, anger, or sadness. These are all normal responses that can represent a loss of control, a fear of the immediate future, or an underlying fear of death. For the most part, patients and families will have their own unique timetable and method for processing this information. Clinicians should generally respond with patience, emphasizing support (nonabandonment) and assurance of aggressive symptom management.
• When Physician and Patient Disagree—When the oncologist thinks further chemotherapy is not indicated, a number of strategies may be tried: holding family conferences to identify the decision-makers in the family and getting the same information to all involved; informing people of, and giving them access to, the actual medical research studies and results; or writing the options down in concrete terms. Much of the time, patients and families may simply need more time to adjust to a difficult situation. Sometimes, it is just a matter of seeing the situation from a different perspective.
Always talk with patients in an honest and straightforward way. Be willing to use the words "death" and "dying"—do not use euphemisms. Make it clear, however, that you will address symptom management (eg, treatment for pain or dyspnea). Write down key pieces of information, and encourage questions. Make time to answer those questions by phone, e-mail, or in person. Finally, consider training to discuss these issues. Even experienced oncologists can be trained to give bad news compassionately.
FINANCIAL DISCLOSURE: The authors have no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.
1. von Gruenigen VE, Daly BJ: Futility: Clinical decisions at the end-of-life in women with ovarian cancer. Gynecol Oncol 97:638-644, 2005.
2. Temel JS, Jackson VA, Billings JA, et al: Phase II study: Integrated palliative care in newly diagnosed advanced non-small-cell lung cancer patients. J Clin Oncol 25:2377-2382, 2007.
3. von Gruenigen VE, Daly BJ: Futility: Clinical decisions at the end-of-life in women with ovarian cancer. Gynecol Oncol 97:638-644, 2005.
4. Schneiderman LJ, Jecker N: Futility in practice. Arch Intern Med 153:437-441, 1993.
5. Youngner SJ: Who defines futility? JAMA 260:2094-2095, 1988.
6. Federal Patient Self Determination Act 42 USC Â§1395 cc(a), 1990.
7. Tomlinson T, Michalski AJ, Pentz RD, et al: Futile care in oncology: When to stop trying. Lancet Oncol 2:759-764, 2001.
8. Lantos JD, Singer PA, Walker RM, et al: The illusion of futility in clinical practice. Am J Med 87:81-84, 1989.
9. Jonsen AR, Siegler M, Winslade WJ: Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 5th ed. New York, 2002.
10. Matsuyama R, Reddy SN, Smith TJ: Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol 24:1-7, 2006.
11. Silvestri G, Pritchard R, Welch HG: Preferences for chemotherapy in patients with advanced non-small cell lung cancer: Descriptive study based on scripted interviews. BMJ 317:771-775, 1998.
12. American Society of Clinical Oncology Outcomes Working Group: Outcomes of cancer treatment for technology assessment and cancer treatment guidelines. J Clin Oncol 14:671-679, 1996.
13. Smith T, Khatcheressian J, Lyman G, et al: 2006 ASCO recommendations for the use of white blood cell growth factors. J Clin Onc 24:1-19, 2006.
14. Earle CC, Neville BA, Landrum MB, et al: Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 22:315-321, 2004.
15. Murillo JR Jr, Koeller J: Chemotherapy given near the end of life by community oncologists for advanced non-small cell lung cancer. Oncologist 11:1095-1099, 2006.
16. Schrag D: The price tag on progress—chemotherapy for colorectal cancer. N Engl J Med 351:317-319, 2004.
17. Meropol NJ, Schulman KA: Cost of cancer care: Issues and implications. J Clin Oncol 25:180-186, 2007.
18. Hillner BE, Schrag D, Sargent DJ, et al: Cost-effectiveness projections of oxaliplatin and infusional fluorouracil versus irinotecan and bolus fluorouracil in first-line therapy for metastatic colorectal carcinoma. Cancer 104:1871-1884, 2005.
19. Collins R, Fenwick E, Trowman R, et al: A systematic review and economic model of the clinical effectiveness and cost-effectiveness of docetaxel in combination with prednisone or prednisolone for the treatment of hormone-refractory metastatic prostate cancer. Health Technol Assess 11(2):iii-iv, xv-xviii, 1-179, 2007.
20. Detmar SB, Aaronson NK, Wever LD, et al: How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues. J Clin Oncol 18:3295-3301, 2000.
21. Elkin EB, Lee S, Casper ES, et al: Treatment decision-making preferences in older patients with metastatic colorectal cancer (abstract 8519). J Clin Oncol 24(18S):472s, 2006.
22. Vogelzang NJ, Breitbart W, Cella D, et al: Patient, caregiver, and oncologist perceptions of cancer-related fatigue: Results of a tripart assssment survey. The Fatigue Coalition. Semin Hematol 34(3 suppl 2):4-12, 1997.
23. Gochman DS, Bonham GS: Physicians and the hospice decision: Awareness, discussion, reasons and satisfaction. Hosp J 4:25-53, 1988.
24. McGorty EK, Bornstein BH: Barriers to physicians' decisions to discuss hospice: Insights gained from the United States hospice model.J Eval Clin Pract 9:363-372, 2003.
25. Helft PR: Necessary collusion: Prognostic communication with advanced cancer patients. J Clin Oncol 23:3146-3150, 2005.
26. Chow E, Harth T, Hruby G, et al: How accurate are physicians' clinical predictions of survival and the available prognostic tools in estimating survival times in terminally ill cancer patients? A systematic review. Clin Oncol (R Coll Radiol) 13:209-218, 2001.
27. Viganò A, Dorgan M, Bruera E, et al: The relative accuracy of the clinical estimation of the duration of life for patients with end of life cancer.Cancer 86:170-176, 1999.
28. Gattellari M, Voigt KJ, Butow PN, et al: When the treatment goal is not cure: Are cancer patients equipped to make informed decisions? J Clin Oncol 20:503-513, 2002.
29. Hagerty RG, Butow PN, Ellis PA, et al: Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 22:1721-1730, 2004.
30. Meropol NJ, Weinfurt KP, Burnett CB, et al: Perceptions of patients and physicians regarding phase I cancer clinical trials: Implications for physician-patient communication. J Clin Oncol 21:2589-2596, 2003.
31. Weeks JC, Cook EF, O'Day SJ, et al: Relationship between cancer patients' predictions of prognosis and their treatment preferences.JAMA 279:1709-1714, 1998.
32. Doyle C, Crump M, Pintilie M, et al: Does palliative chemotherapy palliate? Evaluation of expectations, outcomes, and costs in women receiving chemotherapy for advanced ovarian cancer. J Clin Oncol 19:1266-1274, 2001.
33. Zimmermann C: Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn 29:297-314, 2007.
34. Smith TJ: Tell it like it is. J Clin Oncol 21(9S):12s-16s, 2003.
35. Hagerty RG, Butow PN, Ellis PM, et al: Communicating with realism and hope: Incurable cancer patients' views on the disclosure of prognosis. J Clin Oncol 23:1278-1288, 2005.
36. Kirk P, Kirk I, Kristjanson LJ: What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 328:1343-1347, 2004.
37. McGorty EK, Bornstein BH: Barriers to physicians' decisions to discuss hospice: Insights gained from the United States hospice model. J Eval Clin Pract 9:363-372, 2003.
38. Lamont EB, Siegler M: Paradoxes in cancer patients' advance care planning. J Palliat Med 3:27-35, 2000.
39. Smith TJ: The art of oncology: When the tumor is not the target. Tell it like it is. J Clin Oncol 18:3441-3445, 2000.
40. Casarett D, Crowley R, Stevenson C, et al: Making difficult decisions about hospice enrollment: What do patients and families want to know? J Am Geriatr Soc 53:249-254, 2005.
41. Casarett DJ, Crowley RL, Hirschman KB: How should clinicians describe hospice to patients and families? J Am Geriatr Soc 52:1924-1928, 2004.
42. Pfister DG, Johnson DH, Azzoli CG, et al: American Society of Clinical Oncology treatment of unresectable non-small-cell lung cancer guideline: Update 2003. J Clin Oncol 22:330-353, 2004.
43. Shepherd FA, Dancey J, Ramlau R, et al: Prospective randomized trial of docetaxel versus best supportive care in patients with non-small cell lung cancer previously treated with platinum-based chemotherapy. J Clin Oncol 18:2095-2103, 2000.
44. Dancey J, Shepherd FA, Gralla RJ, et al: Quality of life assessment of second-line docetaxel versus best supportive care in patients with non-small-cell lung cancer previously treated with platinum-based chemotherapy: Results of a prospective, randomized phase III trial. Lung Cancer 43:83-194, 2004.
45. Shepherd FA, Rodrigues Pereira J, Ciuleanu T, et al: Erlotinib in previously treated non-small-cell lung cancer (National Cancer Institute of Canada Clinical Trials Group). N Engl J Med 353:123-132, 2005.
46. Goldberg RM, Rothenberg ML, Van Cutsem E, et al: The continuum of care: A paradigm for the management of metastatic colorectal cancer. Oncologist 12:38-50, 2007.
47. Tannock IF, de Wit R, Berry WR, et al, for TAX 327 Investigators: Docetaxel plus prednisone or mitoxantrone plus prednisone for advanced prostate cancer. N Engl J Med 351:1502-1512, 2004.
48. Wright AA, Katz IT: Letting go of the rope—aggressive treatment, hospice care, and open access. N Engl J Med 357:324-327, 2007.
49. Pitorak EF, Armour M, Sivec HD: Project Safe Conduct integrates palliative goals into comprehensive cancer care: An interview with Elizabeth Ford Pitorak and Meri Armour. Innovations in End-of-Life Care 4(4), 2002.
50. Finn J, Pienta K, Parzuchowski J, et al: Palliative care project: Bridging active treatment and hospice for terminal cancer (abstract 1452). Proc Am Soc Clin Oncol 21:364a, 2002.
51. Whelan TM, O'Brien MA, Villasis-Keever M, et al: Impact of cancer-related decision aids. Evidence report/technology assessment no. 46. (Prepared by McMaster University under Contract No. 290-97-0017.) AHRQ publication no. 02-E004. Rockville, Md; Agency for Healthcare Research and Quality; July 2002.
52. Peele PB, Siminoff LA, Xu Y, et al: Decreased use of adjuvant breast cancer therapy in a randomized controlled trial of a decision aid with individualized risk information. Med Decis Making 25:301-307, 2005.
53. National Cancer Institute: Treatment options for recurrent non-small cell lung cancer. Available at www.cancer.gov/cancertopics/pdq/treatment/non-small-cell-lung/Patient/page6. Accessed May 20, 2008.
54. Lung Cancer Alliance: Lung cancer facts. Available at www.lungcanceralliance.org/facing/facts.html. Accessed May 20, 2008.
55. Fintor L: Direct-to-consumer marketing: How has it fared? J Natl Cancer Inst 94:329-331, 2002.
56. Report to Congressional Requesters: Prescription drugs: Improvement needed in FDA's oversight of direct-to-consumer adverstising. Report GAO-07-54, US Government Accountability Office, p 13. Washington, DC, 2006.
57. Viale PH, Sanchez Yamamoto D: The attitudes and beliefs of oncology nurse practitioners regarding direct-to-consumer advertising of prescription medications. Oncol Nurs Forum 31:777-783, 2004.
58. Abel GA, Lee SJ, Weeks JC: Direct-to-consumer advertising in oncology: A content analysis of print media. J Clin Oncol 25:1267-1271, 2007.
59. Abel GA, Penson RT, Joffe S, et al: Direct-to-consumer advertising in oncology.Oncologist 11:217-226, 2006.
60. Quill TE, Williamson PR: Healthy approaches to physician stress. Arch Intern Med 150:1857-1861, 1990.
61. Meier DE, Back AL, Morrison S: The inner life of physicians and care of the seriously ill. JAMA 286:3007-3014, 2001.
62. Baile WF, Lenzi R, Parker PA, et al: Oncologists' attitudes toward and practices in giving bad news: An exploratory study. J Clin Oncol 20:2189-2196, 2002.
63. National Hospice and Palliative Care Organization website. Available at www.nhpco.org. Accessed May 28, 2008.
64. Christakis NA, Iwashyna TJ: The health impact of health care on families: A matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc Sci Med 57:465-475, 2003.
65. Schockett ER, Teno JM, Miller SC, et al: Late referral to hospice and bereaved family member perception of quality of end-of-life care. J Pain Symptom Manage 30:400-407, 2005.
66. Teno JM, Shu JE, Casarett D, et al: Timing of referral to hospice and quality of care: Length of stay and bereaved family members' perceptions of the timing of hospice referral. J Pain Symptom Manage 34:120-125, 2007.
67. Rabow MW, Schanche K, Petersen J, et al: Patient perceptions of an outpatient palliative care intervention: â€œIt had been on my mind before, but I did not know how to start talking about death..." J Pain Symptom Manage 26:1010-1015, 2003.
68. Brickner L, Scannell K, Marquet S, et al: Barriers to hospice care and referrals: Survey of physicians' knowledge, attitudes and perceptions in a health maintenance organization. J Palliat Med 7:411-418, 2004.
69. Casarett DJ, Quill TE: "I'm not ready for hospice": Strategies for timely and effective hospice discussions. Ann Intern Med 146:443-449, 2007.
70. Wright AA, Katz IT: Letting go of the rope—aggressive treatment, hospice care, and open access. N Engl J Med 357:324-327, 2007.
71. Weeks JC, Cook EF, O'Day S J, et al: Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 279:1709-1714, 1998.
72. Smith T, Swisher K: Telling the truth about terminal cancer. JAMA 279:1746-1748, 1998.
73. Hagerty RG, Butow PN, Ellis PM, et al: Communicating with realism and hope: Incurable cancer patients' views on the disclosure of prognosis. J Clin Oncol 23:1278-1288, 2005
74. Tobias JS, Souhami RL: Fully informed consent can be needlessly cruel. BMJ 307:1199-1201, 1993.
75. Fallowfield L: Participation of patients in decisions about treatment for cancer. BMJ 323:1144, 2001.
76. Emanuel LL, Ferris FD, von Gunten CF, et al: EPEC-O: Education in Palliative and End of Life Care for Oncology. The EPEC Project, Chicago, 2005.
77. Creagan ET: Burnout and balance: How to go the distance in the 21st century. Cancer Control 11:266-268, 2004.
78. Back A: Patient-physician communication in oncology: What does the evidence show? Oncology (Williston Park) 20:67-74, 2006.
79. Rabinowitz T, Peirson R: "Nothing is wrong, doctor": Understanding and managing denial in patients with cancer. Cancer Invest 24:68-76, 2006.
80. Neff P, Lyckholm L, Smith T: Truth or consequences: What to do when the patient doesn't want to know. J Clin Oncol 20:3035-3037, 2002.
81. Fallowfield L, Lipkin M, Hall A: Teaching senior oncologists communication skills: Results from phase I of a comprehensive longitudinal program in the United Kingdom. J Clin Oncol 16:1961-1968, 1998.
FROM PHYSICIANS PRACTICE
Five Steps to Improving Patient Access Judy Capko,
May 21, 2013
Patient access is getting increased attention through reform initiatives. Here are five steps you can take to make sure patients get appropriate access to care in your office.
SEARCH MEDICA SEARCH RESULT
Find peer-reviewed literature and websites for practicing medical professionals