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Better Palliative Care for All: Improving the Lived Experience With Cancer

Better Palliative Care for All: Improving the Lived Experience With Cancer The recent announcement by Vice President Joseph Biden of a cancer cures “moonshot” has brought renewed attention to the goals of 21st-century cancer care. Not since the late President Nixon’s declaration of War on Cancer has so much focus been directed toward the experiences of the 1.66 million persons diagnosed with cancer annually in the United States.1 The framing of this initiative is focused on accelerating scientific progress against cancer as a disease, with little attention to equity2 or to the experience of those living with cancer and its consequences. As billions of dollars are invested in seeking the cure for cancer, attention to the quality of life of people living with cancer and the effect of cancer treatment are at least as important to address and far more achievable in the near term. The oncology community is one of numerous specialties focused on improving the lived experience of illness for patients and their loved ones. A growing body of evidence not only points to better quality of life and function for patients with cancer receiving concurrent cancer-directed therapies and consultative palliative care as part of their treatment but also points to prolonged survival.3 This counterintuitive finding suggests that relief from the pain, symptoms, and stresses of a serious illness and the prevention of the crises that result in avoidable hospitalizations actually helps patients with cancer complete their course of treatment and live longer. Several randomized clinical trials have demonstrated significant improvements in the patient or family experience (quality of life, depression, survival)3 with early palliative care compared with usual-oncology-care alone. Additional emphasis on and attention to concurrent palliative care yield clinically important returns. If palliative care were a cancer drug, it could possibly be equivalent to a billion-dollar blockbuster. Palliative care provided concurrently with routine oncologic care has also proven beneficial in other ways. Chemotherapies once limited in administration by nausea and life-threatening infections are now deployed regularly due to advances in supportive care, ultimately improving treatment tolerance, adherence, and the overall patient experience. Patients often can avoid invasive, debilitating procedures such as radical mastectomy in favor of options that improve cancer outcomes while also respecting the importance of cosmesis and emotional well-being. Patients and advocates share a consistent message regarding the importance of long-term morbidities, financial struggles, and poor symptom management: “The patient experience matters.” Concurrent with a focus on cancer cures must be a bold and determined mission to improve the cancer care experience for all, regardless of cancer treatment outcomes. This could be achieved by strategic investment in the clinical practice and science of the patient experience through palliative care. Palliative care is specialized care for patients with serious illness. Although palliative care has had an end-of-life connotation to many and denotes a service, clinic, or person to some, it is a philosophy of care aimed at improving the patient and family experience and quality of life, regardless of treatment outcomes. Palliative care recognizes the patient and family as a unit, serves to maximize both quality and quantity of life, and understands that physical, social, financial, emotional, and spiritual distress not only influence the experience of having cancer but also influence cancer treatment outcomes. Clinicians deliver palliative care in 2 major ways: primary and secondary/specialty–level service.4 Primary palliative care is the basic, foundational attention to quality of needs, including symptom assessment and management, sharing information about what to expect, communication about patient priorities, and providing accessible continuity of care over time and across care settings. This type of care is generally delivered by oncologists concurrently when cancer-directed therapies are initiated. Secondary/specialty–level services consist of palliative care specialists with additional training who work along with treating physicians to provide additional support. Both services are important for patients who are living with cancer, managing the effects of a previous cancer and its treatment, or nearing the end of life. The oncology team is the principle source of primary palliative care for the majority of patients with cancer. When needs are more complex or time consuming, oncologists engage colleagues with specialist palliative care expertise. This “manage first, refer second” practice reflects the ethos of the oncology profession—the notion that “this is our job”—while also reflecting a practical humility—“It’s hard to be everything to everyone all the time.” Does increased provision of palliative care run counter to the focus on curing cancer? Does a concurrent movement for palliative care for all distract from this new charge? No. Rather these 2 components of person-centered oncology care—focus on cure simultaneous to a focus on the experience—are mutually interdependent. There are 2 central tenets to the cancer experience: (1) A person who is cured of cancer must first live with cancer; and (2) Living with cancer portends an experience for patients and their loved ones that having cancer is life-altering, no matter what the outcome. Supporting patients and families through this unique experience requires careful attention, honed skills, and a recognition that sometimes an “extra layer of support” (the sine qua non of specialty palliative care) provided alongside the oncology team is valuable, and necessary. Rather than an either-or approach, patients deserve both focused attention to the science of reducing the burden of cancer, along with vigorous interest in improving the cancer experience through palliative care. This strategy uses an and-with approach that emphasizes the regular integration of palliative care and development of its science and workforce. Cancer can be frightening, overwhelming, and exhausting, and cancer care can be disjointed, distracted, and sometimes toxic. Better delivery of palliative care, both by oncologists and palliative care specialists, would change this. Success, however, will require 4 strategic investments. First, access to specialist-level palliative care for all patients with cancer must be increased. A plan to address the estimated shortage of 10 000 palliative care physicians must include pathways for training additional health care professionals,5 as proposed by the Palliative Care and Hospice Education and Training Act8 legislation. Second, open access models that allow simultaneous palliative care with cancer-directed treatments should be explored. For example, the Centers for Medicare & Medicaid Services Care Choices Model allows patients to opt for hospicelike palliative care services while receiving care from oncologists. Eliminating the either-or model for high-quality palliative care concurrent to cancer therapies should be a priority; patients deserve both at all times. Third, oncology professionals should receive training in the core knowledge and skills of palliative care. Recent evidence6 shows that one-fourth of oncology trainees are not taught the fundamental components of primary palliative care (eg, conducting a family meeting, symptom management, how and when to refer to hospice). Educational efforts should be strengthened starting earlier in medical education and focusing both on knowledge (eg, effective opioid titration) and skills (eg, determining goals for care). Fourth, funding for palliative care research and discovery should increase. Less than 1% of all funded grants by the major National Institutes of Health institutes were awarded to palliative care research.7 Improving the cancer experience requires commitment from funders to drive the engine of discovery. While marching boldly toward a future that emphasizes prevention and improved treatment to minimize the morbidity and mortality from cancer for current and future generations, it is important to remember that 2 essential, complementary goals exist: improving the experience for all, while curing cancer for an unprecedented many. Cure without compassion is an exercise in killing malignant cells, while failing to support the living person. Back to top Article Information Corresponding Author: Arif Kamal, MD, MBA, MHS, Duke Cancer Institute, Duke University Medical Center, PO Box 2715, Durham, NC 27705 (arif.kamal@duke.edu). Published Online: May 31, 2016. doi:10.1001/jama.2016.6491. Conflict of Interest Disclosures: All the authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported. References 1. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2016. CA Cancer J Clin. 2016;66(1):7-30.PubMedGoogle ScholarCrossref 2. Horwitz RI. Equity in cancer care and outcomes of treatment: a different type of cancer moonshot. JAMA. 2016;315(12):1231-1232.PubMedGoogle ScholarCrossref 3. Davis MP, Temel JS, Balboni T, Glare P. A review of the trials which examine early integration of outpatient and home palliative care for patients with serious illnesses. Ann Palliat Med. 2015;4(3):99-121.PubMedGoogle Scholar 4. von Gunten CF. Secondary and tertiary palliative care in US hospitals. JAMA. 2002;287(7):875-881.PubMedGoogle ScholarCrossref 5. Kamal AH, Maguire JM, Meier DE. Evolving the palliative care workforce to provide responsive, serious illness care. Ann Intern Med. 2015;163(8):637-638.PubMedGoogle ScholarCrossref 6. Thomas RA, Curley B, Wen S, Zhang J, Abraham J, Moss AH. Palliative care training during fellowship: a national survey of US hematology and oncology fellows. J Palliat Med. 2015;18(9):747-751.PubMedGoogle ScholarCrossref 7. Gelfman LP, Du Q, Morrison RS. An update: NIH research funding for palliative medicine 2006 to 2010. J Palliat Med. 2013;16(2):125-129.PubMedGoogle ScholarCrossref 8. Palliative Care and Hospice Education and Training Act. HR 3119, 114th Cong, 1st Sess (2015). http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA American Medical Association

Better Palliative Care for All: Improving the Lived Experience With Cancer

JAMA , Volume 316 (1) – Jul 5, 2016

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Publisher
American Medical Association
Copyright
Copyright © 2016 American Medical Association. All Rights Reserved.
ISSN
0098-7484
eISSN
1538-3598
DOI
10.1001/jama.2016.6491
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Abstract

The recent announcement by Vice President Joseph Biden of a cancer cures “moonshot” has brought renewed attention to the goals of 21st-century cancer care. Not since the late President Nixon’s declaration of War on Cancer has so much focus been directed toward the experiences of the 1.66 million persons diagnosed with cancer annually in the United States.1 The framing of this initiative is focused on accelerating scientific progress against cancer as a disease, with little attention to equity2 or to the experience of those living with cancer and its consequences. As billions of dollars are invested in seeking the cure for cancer, attention to the quality of life of people living with cancer and the effect of cancer treatment are at least as important to address and far more achievable in the near term. The oncology community is one of numerous specialties focused on improving the lived experience of illness for patients and their loved ones. A growing body of evidence not only points to better quality of life and function for patients with cancer receiving concurrent cancer-directed therapies and consultative palliative care as part of their treatment but also points to prolonged survival.3 This counterintuitive finding suggests that relief from the pain, symptoms, and stresses of a serious illness and the prevention of the crises that result in avoidable hospitalizations actually helps patients with cancer complete their course of treatment and live longer. Several randomized clinical trials have demonstrated significant improvements in the patient or family experience (quality of life, depression, survival)3 with early palliative care compared with usual-oncology-care alone. Additional emphasis on and attention to concurrent palliative care yield clinically important returns. If palliative care were a cancer drug, it could possibly be equivalent to a billion-dollar blockbuster. Palliative care provided concurrently with routine oncologic care has also proven beneficial in other ways. Chemotherapies once limited in administration by nausea and life-threatening infections are now deployed regularly due to advances in supportive care, ultimately improving treatment tolerance, adherence, and the overall patient experience. Patients often can avoid invasive, debilitating procedures such as radical mastectomy in favor of options that improve cancer outcomes while also respecting the importance of cosmesis and emotional well-being. Patients and advocates share a consistent message regarding the importance of long-term morbidities, financial struggles, and poor symptom management: “The patient experience matters.” Concurrent with a focus on cancer cures must be a bold and determined mission to improve the cancer care experience for all, regardless of cancer treatment outcomes. This could be achieved by strategic investment in the clinical practice and science of the patient experience through palliative care. Palliative care is specialized care for patients with serious illness. Although palliative care has had an end-of-life connotation to many and denotes a service, clinic, or person to some, it is a philosophy of care aimed at improving the patient and family experience and quality of life, regardless of treatment outcomes. Palliative care recognizes the patient and family as a unit, serves to maximize both quality and quantity of life, and understands that physical, social, financial, emotional, and spiritual distress not only influence the experience of having cancer but also influence cancer treatment outcomes. Clinicians deliver palliative care in 2 major ways: primary and secondary/specialty–level service.4 Primary palliative care is the basic, foundational attention to quality of needs, including symptom assessment and management, sharing information about what to expect, communication about patient priorities, and providing accessible continuity of care over time and across care settings. This type of care is generally delivered by oncologists concurrently when cancer-directed therapies are initiated. Secondary/specialty–level services consist of palliative care specialists with additional training who work along with treating physicians to provide additional support. Both services are important for patients who are living with cancer, managing the effects of a previous cancer and its treatment, or nearing the end of life. The oncology team is the principle source of primary palliative care for the majority of patients with cancer. When needs are more complex or time consuming, oncologists engage colleagues with specialist palliative care expertise. This “manage first, refer second” practice reflects the ethos of the oncology profession—the notion that “this is our job”—while also reflecting a practical humility—“It’s hard to be everything to everyone all the time.” Does increased provision of palliative care run counter to the focus on curing cancer? Does a concurrent movement for palliative care for all distract from this new charge? No. Rather these 2 components of person-centered oncology care—focus on cure simultaneous to a focus on the experience—are mutually interdependent. There are 2 central tenets to the cancer experience: (1) A person who is cured of cancer must first live with cancer; and (2) Living with cancer portends an experience for patients and their loved ones that having cancer is life-altering, no matter what the outcome. Supporting patients and families through this unique experience requires careful attention, honed skills, and a recognition that sometimes an “extra layer of support” (the sine qua non of specialty palliative care) provided alongside the oncology team is valuable, and necessary. Rather than an either-or approach, patients deserve both focused attention to the science of reducing the burden of cancer, along with vigorous interest in improving the cancer experience through palliative care. This strategy uses an and-with approach that emphasizes the regular integration of palliative care and development of its science and workforce. Cancer can be frightening, overwhelming, and exhausting, and cancer care can be disjointed, distracted, and sometimes toxic. Better delivery of palliative care, both by oncologists and palliative care specialists, would change this. Success, however, will require 4 strategic investments. First, access to specialist-level palliative care for all patients with cancer must be increased. A plan to address the estimated shortage of 10 000 palliative care physicians must include pathways for training additional health care professionals,5 as proposed by the Palliative Care and Hospice Education and Training Act8 legislation. Second, open access models that allow simultaneous palliative care with cancer-directed treatments should be explored. For example, the Centers for Medicare & Medicaid Services Care Choices Model allows patients to opt for hospicelike palliative care services while receiving care from oncologists. Eliminating the either-or model for high-quality palliative care concurrent to cancer therapies should be a priority; patients deserve both at all times. Third, oncology professionals should receive training in the core knowledge and skills of palliative care. Recent evidence6 shows that one-fourth of oncology trainees are not taught the fundamental components of primary palliative care (eg, conducting a family meeting, symptom management, how and when to refer to hospice). Educational efforts should be strengthened starting earlier in medical education and focusing both on knowledge (eg, effective opioid titration) and skills (eg, determining goals for care). Fourth, funding for palliative care research and discovery should increase. Less than 1% of all funded grants by the major National Institutes of Health institutes were awarded to palliative care research.7 Improving the cancer experience requires commitment from funders to drive the engine of discovery. While marching boldly toward a future that emphasizes prevention and improved treatment to minimize the morbidity and mortality from cancer for current and future generations, it is important to remember that 2 essential, complementary goals exist: improving the experience for all, while curing cancer for an unprecedented many. Cure without compassion is an exercise in killing malignant cells, while failing to support the living person. Back to top Article Information Corresponding Author: Arif Kamal, MD, MBA, MHS, Duke Cancer Institute, Duke University Medical Center, PO Box 2715, Durham, NC 27705 (arif.kamal@duke.edu). Published Online: May 31, 2016. doi:10.1001/jama.2016.6491. Conflict of Interest Disclosures: All the authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported. References 1. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2016. CA Cancer J Clin. 2016;66(1):7-30.PubMedGoogle ScholarCrossref 2. Horwitz RI. Equity in cancer care and outcomes of treatment: a different type of cancer moonshot. JAMA. 2016;315(12):1231-1232.PubMedGoogle ScholarCrossref 3. Davis MP, Temel JS, Balboni T, Glare P. A review of the trials which examine early integration of outpatient and home palliative care for patients with serious illnesses. Ann Palliat Med. 2015;4(3):99-121.PubMedGoogle Scholar 4. von Gunten CF. Secondary and tertiary palliative care in US hospitals. JAMA. 2002;287(7):875-881.PubMedGoogle ScholarCrossref 5. Kamal AH, Maguire JM, Meier DE. Evolving the palliative care workforce to provide responsive, serious illness care. Ann Intern Med. 2015;163(8):637-638.PubMedGoogle ScholarCrossref 6. Thomas RA, Curley B, Wen S, Zhang J, Abraham J, Moss AH. Palliative care training during fellowship: a national survey of US hematology and oncology fellows. J Palliat Med. 2015;18(9):747-751.PubMedGoogle ScholarCrossref 7. Gelfman LP, Du Q, Morrison RS. An update: NIH research funding for palliative medicine 2006 to 2010. J Palliat Med. 2013;16(2):125-129.PubMedGoogle ScholarCrossref 8. Palliative Care and Hospice Education and Training Act. HR 3119, 114th Cong, 1st Sess (2015).

Journal

JAMAAmerican Medical Association

Published: Jul 5, 2016

Keywords: cancer,palliative care

References