2009 Missouri Cancer Care Summit

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My presentation for the 2009 Cancer Care Summit in Jefferson City, MO on October 8-9, 2009.

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  • Picture Ref: http://www.flickr.com/photos/84204480@N00/115633741/ User Squishband Approximately ninety million Americans are living with serious and life-threatening illness, and this number is expected to more than double over the next twenty–five years with the aging of the baby boomers. Yet, studies show that most people living with a serious illness experience inadequately treated symptoms; fragmented care; poor communication with their doctors; and enormous strains on their family caregivers.
  • http://www.flickr.com/photos/squishband/116055440/sizes/o/ User Squishband Approximately ninety million Americans are living with serious and life-threatening illness, and this number is expected to more than double over the next twenty–five years with the aging of the baby boomers. Yet, studies show that most people living with a serious illness experience inadequately treated symptoms; fragmented care; poor communication with their doctors; and enormous strains on their family caregivers.
  • http://www.flickr.com/photos/jkgroove/191905347/sizes/l/ User johnnyalive Studies show that most people living with a serious illness experience inadequately treated symptoms; fragmented care; poor communication with their doctors; and enormous strains on their family caregivers.
  • A relatively new medical subspecialty, palliative medicine is focused on improving quality of life—and quality of care—for seriously ill patients and families. Palliative care provides comprehensive symptom management, intensive communication and coordination of care that addresses the episodic and long-term nature of serious, chronic illness. Patients therefore benefit from well-controlled symptoms, improved patient-physician-family communication and satisfaction with their care. Delivered by a palliative care team, hospital palliative care programs enhance the efficiency and effectiveness of hospital services.
  • A relatively new medical subspecialty, palliative medicine is focused on improving quality of life—and quality of care—for seriously ill patients and families. Palliative care provides comprehensive symptom management, intensive communication and coordination of care that addresses the episodic and long-term nature of serious, chronic illness. Patients therefore benefit from well-controlled symptoms, improved patient-physician-family communication and satisfaction with their care. Delivered by a palliative care team, hospital palliative care programs enhance the efficiency and effectiveness of hospital services.
  • Image Ref: http://www.flickr.com/photos/7197250@N06/495524570/ User a.drian In 2007, there were 2,883 physicians board-certified in palliative medicine (1 physician per 31,000 persons living with serious and life-threatening illness, or 1 physician per 432 Medicare deaths from chronic illness). In comparison, there are 16,800 cardiologists (1 per 71 heart attack victims) and 10,000 oncologists (1 per 145 patients newly diagnosed with cancer).
  • Image ref: http://www.missouri-map.org/detailed.htm AAHPM Physician Members
  • Our data indicate that in states where there is greater access to palliative care programs, patients: Are less likely to die in the hospital Experience fewer ICU/CCU admissions in the last six months of life Spend less time in an ICU/CCU in the last six months of life
  • Offering Chemotherapy and Hospice Jointly: One Solution to Hospice Underuse Talya Salz, PhD Health Outcomes Research Group, Department of Epidemiology and Biostatistics, Memorial Sloan-Kettering Cancer Center, New York, NY, [email_address] Noel T. Brewer, PhD Department of Health Behavior and Health Education, University of North Carolina, School of Public Health, Chapel Hill, NC Purpose . Patients with advanced lung cancer typically receive chemotherapy at the cost of receiving care that may promote quality of life more effectively. The authors examined whether offering chemotherapy and hospice concurrently, a clinically appropriate but often unavailable option, might resolve this problem. Method. Adult smokers ( N = 198) completed an Internet-based survey in which they imagined having advanced lung cancer. Participants rated the effectiveness of 4 treatments (supportive care alone, chemotherapy with supportive care, hospice, and chemotherapy with hospice) at achieving 4 goals of treatment (extending survival, controlling symptoms, avoiding side effects, and promoting quality of life at the end of life). Results. Reflecting utilization patterns of lung cancer patients, few respondents preferred supportive care alone (10%) or hospice (19%), and many preferred chemotherapy (29%). The most common choice was concurrent chemotherapy and hospice (42%). Treatments that involved chemotherapy were seen as the most effective at extending survival, whereas treatments that involved hospice were seen as most effective at promoting quality of life. Effectiveness ratings were weakly related to preferences for hospice, moderately related to preferences for chemotherapy with supportive care, and strongly related to preferences for chemotherapy and hospice together. Conclusions. These findings suggest that interest in hospice may be low because, offered without chemotherapy, hospice is perceived as ineffective at controlling symptoms and avoiding side effects. Chemotherapy and hospice together may be a preferred option for treating advanced lung cancer. Furthermore, preferences for chemotherapy and hospice together best reflect the values people placed on the goals of treatment.
  • Background: Appropriately timed cessation of chemotherapy is integral to patient's quality of life. We evaluate the use of and associated factors with chemotherapy at the end of life. Methods: A review of deceased oncology patients treated with palliative intent from April 2005 over 2 years at two cancer centres was carried out. Chi-square tests of patient demographics, cancer and chemotherapy variables were carried out to determine associations with commencing chemotherapy and continuation within 2 and 4 weeks of death. Multivariate analyses were carried out with significant factors to determine their independent effect. Results: Seven hundred and forty-seven patients died during this period; median age 67 years (range 20–96); female 44%. Three hundred and ninety-eight (53%) received chemotherapy: 18% and 8% within 4 and 2 weeks of death, respectively. Younger age ( P < 0.01), cancer type ( P < 0.01) and chemosensitivity of the tumour ( P < 0.01) were predictors for commencing chemotherapy in multivariate analysis. Treating doctor predicted for chemotherapy in the 4 weeks before death (<0.05), but none of the variables predicted for chemotherapy in the last 2 weeks of life. Conclusions: Younger age, tumour type and chemosensitivity are important predictors of patients receiving palliative chemotherapy. Individual clinician was the only predictor for continuing chemotherapy in the last 4 weeks of life. Key words: end of life, palliative chemotherapy, Quality Oncology Practice Initiative
  • From Pallimed: Archives of Internal Medicine has a paper about hospice discussions with patients with lung cancer . The data came from a large, US, multicenter/regional study which involved phone surveys of ~1500 patients diagnosed with lung cancer (who, among many other items, were asked if a health care provider had discussed hospice care with them). The surveys occurred 4-7 months after diagnosis, this analysis only looked at patients with metastatic cancer, and charts were also abstracted to see if there was any documentation of discussing hospice care. Surrogates could answer for patients who weren't able or who were already dead and in fact over half of the respondents in this analysis were actually surrogates. Response rate was ~50% for the original telephone survey. A bunch of other items were collected as well. (As a minor side note they talk about coding patients' responses to questions about their prognosis and including 'it's in God's hands' as one of the potential codes - along with different timeframes and 'I don't know.') There's a lot of data in this paper, and I'm just going to focus on what seems most relevant. Only 53% of patients (or their surrogates) reported and/or had medical records indicating that they had discussed hospice with a health care provider. There were a variety of modest (generally 5-10%) but statistically significant differences in reporting that discussion between different groups (whites more likely than African Americans or Latinos; patients with Medicare more likely than those with Medicaid; older more likely than younger; those who received chemo vs. those that hadn't, etc.). Time to death had a major impact on who had had a hospice discussion as you'd expect, but the results weren't heartening. Surrogates reported that for ~80% of patients who were already dead there had been a hospice discussion; this drops to 54% for those who died within 2 months of the interview; 34% for those 2-4 months, and 26% for those who died 4-6 months after the interview. When they looked only at the patients who completed the interview themselves these rates were even lower (43% for those who died within 2 months, 27% 2-4 months, etc.). Patients' self-reported expected prognoses impacted the likelihood of having a discussion: of those who expected less than a year it was ~45%, for those who thought it was likely to be greater than 5 years (which, not-shockingly-but-still-kinda-sobering, was over a fifth of the cohort - remember these were all patients with stage 4 lung cancer which has a 5 year survival of under 5%) it was 12%. 16% of the 'In God's hands' patients reported a hospice discussion. Of the "do not know" patients, which were 40% of respondents, 18% had had a discussion. Notably, half this patient responders said they prefer 'pain relief over life extension.' That preference did not predict having a hospice conversation. The low response rate to the survey may is a concern with these data, however my suspicion is that a 100% response rate would likely have altered the numbers a bit, but would not have altered the trends seen here. In addition, surrogates probably aren't terribly accurate reporters of what has happened to a patient; that said the differences in what the entire cohort demonstrated and the subgroup of patient-themselves responders likely reflects the reality that the surrogate responder patients were sicker (or of course already dead) and so the reported rates of conversations were higher in the entire group. That aside the findings here are quite clear: for this group of patients with dismal prognoses hospice discussions were happening late (if at all), patients overall admitted ignorance or inaccurate perceptions of their likely futures (time-wise), those that did have a decent understanding of their prognosis were more likely to have had a discussion, although still at low rates, and half of these patients straight-up reported that life extension was not their preeminent goal. I'm personally mostly interested in data about patients' perceptions of prognosis. To me, that's the key breakdown here. If you have a patient who is thinking they'll likely live for more than 5 years, a discussion, even info sharing, about hospice doesn't particularly make sense. If they understand it's likely to be less than a year, that discussion makes much more sense. More than that, we're doing our patients a disservice if we are telling them/allowing them to believe (by not correcting or never even addressing) grossly over-optimistic prognoses. I think I'd make different choices in my life (and my health care decisions) if I understood my likely time left was less than a year vs. 2+. (One also wonders if that fifth who thought they had over 5 years to live thought their cancer was curable.) Not all patients want to talk about time, of course - that's fine (although not making sure they understand that their cancer is incurable and any treatment is given with the hope of life-prolongation but without cure is not fine). But half these patients were already saying life-prolongation wasn't their top priority; if we're not even discussing time and all the treatment options with them we're doing them a disservice. This is not just a problem in oncology, although it's probably the most well-defined there as it's relatively well-studied. Sometimes I feel that the Great Big Dirty Secret of 'palliative care' that's really of course out in the open if you cared to look at the literature or, you know, talk with patients is that many and indeed most of our patients facing life-limiting illnesses want to talk about this stuff. (To some extent of course, not necessarily all the gory details). And they are in fact deeply grateful to be able to talk about it. More frightening, worrying, not to talk about it. They thank me all the time for bringing it up, actually. And it's usually pretty easy to do.
  • The integration into cancer care of therapies to address the multiple issues that cause suffering for patients and their families and have an impact on the quality of their lives. Palliative cancer care aims to give patients and their families the capacity to realize their full potential, when their cancer is curable as well as when the end of life is near.
  • In 2007, an estimated 1.4 million patients received services from hospice (Figure 2). This estimate includes: • 930,000 patients who died under hospice care in 2007; • 258,000 who remained on the hospice census at the end of 2007 (known as “carryovers”); and • 222,000 patients who were discharged alive in 2007 for reasons including extended prognosis, desire for curative treatment, and other reasons (known as “ live discharges”). 38.8% of all deaths in the United States were under the care of a hospice program (Figure 3). 2.4m deaths 0.93 mil on hospice
  • Approximately 30.8% of those served by hospice died or were discharged in seven days or less, and 13.1% died or were discharged in 180 days or more. The median (50th percentile) length of service in 2007 was 20.0 days, a slight decline from 20.6 days in 2006. This means that half of hospice patients received care for less than three weeks and half received care for more than three weeks. The average length of service increased to 67.4 days (from 59.8 in 2006) (Figure 4).1
  • Highlight that this is not the primary reason to use hospice, but does demonstrate you can have good goal oriented Findings of a major study demonstrated that hospice services save money for Medicare and bring quality care to patients with life-limiting illness and their families.6 Researchers at Duke University found that hospice reduced Medicare costs by an average of $2,309 per hospice patient. Additionally, the study found that Medicare costs would be reduced for seven out of 10 hospice recipients if hospice has been used for a longer period of time. For cancer patients, hospice use decreased Medicare costs up until 233 days of care. For non-cancer patients, there were cost savings seen up until 154 days of care. While hospice use beyond these periods cost Medicare more than conventional care, the report’s authors wrote that “More effort should be put into increasing short stays as opposed to focusing on shortening long ones.”?
  • 2009 Missouri Cancer Care Summit

    1. 1. Hospice & Palliative Care October 8-9, 2009 Christian Sinclair, MD, FAAHPM Kansas City Hospice & Palliative Care
    2. 2. 90 million Americans are living with a life-threatening illness…
    3. 3. And the number is expected to double in the next 25 years.
    4. 7. Hospice & Palliative Care Symptom Control System Efficiency Medication Prioritization Communication Informed Consent
    5. 8. Trans-disciplinary Team Physician Nurse Volunteer Chaplain Social Worker Pharmacist
    6. 9. What’s The Difference? Palliative Care Hospice
    7. 11. 15 12 3 2 1 1
    8. 16. <ul><li>Embracing palliative care </li></ul><ul><ul><li>Or supportive care (either name) </li></ul></ul><ul><li>Endorsed a new policy statement </li></ul>
    9. 26. Reduces Medicare Costs
    10. 34. Resources <ul><li>AAHPM – www.aahpm.org </li></ul><ul><li>NHPCO – www.nhpco.org </li></ul><ul><li>MHPCA – www.mhpca.org </li></ul><ul><li>Pallimed – www.pallimed.org </li></ul><ul><li>CAPC – www.capc.org </li></ul><ul><li>ASCO – www.asco.org </li></ul>
    11. 35. References <ul><li>NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, October 2008. http://bit.ly/5YNAh </li></ul><ul><li>Center to Advanced Palliative Care. http://www.capc.org/reportcard/ </li></ul><ul><li>D.H. Taylor Jr et al. / Social Science & Medicine 65 (2007) 1466–1478. http://bit.ly/bClPN </li></ul>
    12. 36. References <ul><li>Haiden A. Huskamp; Nancy L. Keating; Jennifer L. Malin; Alan M. Zaslavsky; Jane C. Weeks; Craig C. Earle; Joan M. Teno; Beth A. Virnig; Katherine L. Kahn; Yulei He; John Z. Ayanian Discussions With Physicians About Hospice Among Patients With Metastatic Lung Cancer Arch Intern Med . 2009;169(10):954-962. </li></ul><ul><li>S. Kao , J. Shafiq , J. Vardy , and D. Adams Use of chemotherapy at end of life in oncology patients Annals of Oncology Advance Access published on September 1, 2009, DOI 10.1093/annonc/mdp027. Ann Oncol 20: 1555-1559. </li></ul><ul><li>Fadul, N., Elsayem, A., Palmer, J., Del Fabbro, E., Swint, K., Li, Z., Poulter, V., & Bruera, E. (2009). Supportive versus palliative care: What's in a name? Cancer DOI: 10.1002/cncr.24206 </li></ul><ul><li>Salz, Talya, Brewer, Noel T. Offering Chemotherapy and Hospice Jointly: One Solution to Hospice Underuse Med Decis Making 2009 29: 521-531 </li></ul>
    13. 37. Contact Information <ul><li>Christian Sinclair, MD </li></ul><ul><ul><li>Kansas City Hospice & Palliative Care </li></ul></ul><ul><li>Email: [email_address] </li></ul><ul><li>Twitter: @ctsinclair </li></ul><ul><li>Find me on LinkedIn </li></ul>

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