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20years

Revisiting the Fifth Principle of the Imperatives for Quality Cancer Care

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This month, as part of the 20 Years Later blog series, we are revisiting the fifth principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability. This principle states: “People with cancer should be provided a range of benefits by all health care plans that includes primary and secondary prevention, early detection, initial treatment, supportive therapies to manage pain, nausea, fatigue and infections, long-term follow up, psychosocial services, palliative care, hospice care, and bereavement counseling.”

We will consider the components of care and assess the availability in today’s health care plans of the following:

  • Primary and Secondary Prevention
  • Supportive Care (psychosocial)

Primary and Secondary Prevention

Primary and secondary preventative measures are actions and interventions designed to prevent cancer from occurring in the first place, or to identify the disease at the earliest stages, with the goal of reducing the impact of the disease.

20 Years Later

In 2015, we’re revisiting the influential “Imperatives for Quality Cancer Care” publication. Read more posts from our “20 Years Later” series.

Since 1991, NCCS has appeared before the Senate and House Committees on Appropriations for the National Institutes of Health to testify on behalf of specific requests for increased research funding to identify the causes of cancer, as well as issues related to diagnosis, prevention, and continued care for cancer patients and their families. An important step toward increasing access to preventive care is the 2010 Affordable Care Act (ACA), which requires that all plans purchased through the Marketplace and some others cover a variety of free preventive services. These include annual wellness visits, cervical and colorectal cancer screening, diet, obesity, and tobacco use screening, and immunization vaccines—all of which are provided without cost-sharing obligations.

Cancer screening is now a complicated process that includes a range of procedures from imaging, to physical exams, to bloodwork and, most recently, to genetic testing. We have closely monitored the Food and Drug Administration (FDA) efforts to develop a strong regulatory framework for Laboratory Developed Tests (LDTs)—sometimes used to diagnose genetic causes of cancer—to encourage more certainty and predictability. We believe the thoughtful and cautious oversight of these tests can reduce harm to patients. If these tests do not accurately diagnose cancer or properly identify a genetic mutation, a patient could be improperly treated, receiving either unnecessary treatment or no treatment at all.

Additionally, there is much to be determined with regards to defining the risks and benefits of screening. For example, mammography and breast cancer screening remains a highly contested issue, with concerns that women are often overdiagnosed, or overtreated for cancers that will not cause harm. Proponents argue that early detection unequivocally saves lives. The discourse surrounding this and other screening issues will continue to change as new technologies and findings emerge, and will require continuous monitoring by patient advocates to ensure that the consumers of these procedures are receiving the right care at the right time.

While progress is being made in making preventive services accessible, responsibility still falls on the patients. Individuals putting off doctors visits, or opting out of screenings altogether, highlight an issue in public health – individual responsibility and consumer awareness. NCCS and other organizations are dedicated to ensuring patients have access to preventive services, that screening guidelines are evidence-based, and that patients are informed of risks and benefits associated with screening.

Supportive Care (psychosocial)

Cancer patients and physicians are becoming more aware of supportive care and psychosocial needs as an integral part of quality cancer care. This includes the emotional stress of living with a diagnosis of cancer and its treatment, fear of recurrence, anxiety about financial obligations, and the distress imposed on patients and their families of living with the day-to-day physical problems cancer may cause. Assessing the psychosocial concerns and coping mechanisms of patients is of increasing interest to researchers and patient groups who believe this component of care has been long subject to neglect.

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The supporting documents for the Cancer Survival Toolbox include distress screening resources.

NCCS and other organizations have incorporated screening and psychosocial support tools into patient resources. The support documents for the Cancer Survival Toolbox© include the National Comprehensive Cancer Network (NCCN) Guidelines®, a distress management tool that addresses practical, family, emotional, and physical problems, as well as spiritual and religious concerns. Additionally, the Teamwork publication and Pocket Cancer Care Guide iPhone mobile app include a series of questions designed to help facilitate conversations between patients and care providers.

We know that supportive care, including psychosocial care and late and long-term effects are critical to ensuring positive patient outcomes. Survivors and their families should also receive palliative and hospice care when the time is right, and bereavement counseling if necessary. We believe that all cancer patients should receive a cancer care plan to guide their treatment and help coordinate their care. For this reason, we support the Oncology Care Model (OCM), which would require practices to document a care plan that covers diagnosis, treatment goals, plans of treatment, quality of life considerations, care coordination, and psychosocial concerns.

20years

Guest Post: Multidisciplinary Care Is the Hallmark of High Quality Care—So Why Doesn’t Everyone Get It?

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Therese M. Mulvey, MD, FASCO, is the Physician-in-Chief at Southcoast Centers for Cancer Care, Massachusetts.

Therese M. Mulvey, MD, FASCO, is the Physician-in-Chief at Southcoast Centers for Cancer Care, Massachusetts.

The fourth principle in the Imperatives for Quality Cancer Care states, “All people diagnosed with cancer should have access to and coverage for services provided by a multidisciplinary team of care providers across the full continuum of care. Health care plans should be held accountable for timely referral to appropriate specialists when symptoms of cancer or its recurrence may be present.”

Amy is a 49 year old working mother of two high school children, married to Joe,  a general contractor. Amy was diagnosed with breast cancer six weeks ago. She and her husband are worried about the treatments prescribed for her care and present for a second opinion regarding her care. They express concerns about how long it is taking to get “everything done,” the financial impact of a prolonged time away from work in a two income household and the impact on their children who have not been told of the diagnosis yet.

As a medical oncologist, I know that six weeks from diagnosis of cancer and not on any specific therapy is unfortunately the norm, not the exception. Like most women diagnosed with breast cancer, Amy went to her community hospital radiology facility for a mammogram, the kind one gets every year for screening. Her PCP ordered the test and when the results were abnormal the radiology department called her PCP to get orders for a diagnostic mammogram and ultrasound, the tests that are done once something suspicious is seen on the screening study. The diagnostic mammograms were performed seven days after the screening mammogram and they confirmed a lesion that needed biopsy. The biopsy was performed using ultrasound guidance five days after the diagnostic test. Amy learned from her PCP a week after the biopsy that she had breast cancer. Her PCP would refer her to a colleague, a local surgeon who would see her the next day.

The surgeon advised a lumpectomy and sentinel node biopsy of her axilla and scheduled the surgery for two weeks from the visit date. She was reassured that two weeks was a reasonable time to wait due to operating room schedules and the disease itself.  A week after surgery Amy and her husband were seen back in the surgeon’s office to learn that her tumor was not completely removed, she had positive margins and the lymph node was positive for cancer. She needed more surgery.

The second surgery would be scheduled in three weeks, as she needed time to recover from the first.  The second surgery also left her with positive margins, and she learned that her tumor was 2.5 cm in size, three lymph nodes were positive for cancer, her tumor was estrogen receptor negative, and HER2 negative. She was scheduled to meet a medical oncologist who would see her in two days. She was told that she needed chemotherapy, radiation consult, CT scans, heart tests, a portacath device and labs—all before any therapy was started.

20 Years Later

Read more posts from our “20 Years Later” series.

Had Amy been seen in a multidisciplinary clinic or presented at a tumor board where the surgeon, medical oncologist, radiation oncologist, social worker and patient navigator had been present, a very different plan may have been constructed and the time from diagnosis to systemic therapy could have been significantly shorter.  Amy and her family would have had a road map of her care, anticipating the amount of time off needed, side effects anticipated, and multiple care providers involved in her decision making.

Amy may have benefited from up-front chemotherapy for her cancer before surgery. She would have had the ability to meet with a radiation oncologist to explain the role for radiation based on her surgical choice and the survival advantage one achieves if there are positive lymph nodes regardless of the surgery done. A genetic counselor would have discussed the benefits and risks of genetic testing, and the navigator would have coordinated visits, staging tests and visits to minimally disrupt the family’s life. The social worker could have assessed the financial impact of Amy’s diagnosis on her family and assisted with coping with a diagnosis of cancer for her, her children and husband.

Multidisciplinary care is the hallmark of high quality care for the reasons outlined above. So why doesn’t everyone get it? Multidisciplinary clinics are by their very nature inefficient, and they are poorly reimbursed. A surgeon or medical oncologist who can routinely see 10-15 patients in an afternoon can see 5-8 patients in a multidisciplinary clinic. Each physician may bill separately, but often a global bill is generated to support the salaries of the nurse navigator, social worker, rehab specialist, etc.  A stipend is then provided to the physician. By its nature, the cognitive work done in such a setting is not recognized by payers, but the benefit to the patient is enormous and obvious. The barriers to such care in a rural setting are even greater. Some community cancer programs utilize technology to overcome distance and convenience. Regardless of the modality used, multidisciplinary care is a necessary component of high quality and coordinated care for every patient diagnosed with cancer.

“Multidisciplinary care is just that, many disciplines coming together.”

So what should a person ask when first diagnosed with cancer? First, ask, “Who will navigate my care?” If the answer is the physician, that is not their primary job. Physicians see people with problems, solve the problem, and move on. Primary care providers do a much better job at care coordination than specialists, but cancer is a complex and changing environment that a PCP cannot negotiate without help. Navigators—either lay persons or nurses—understand the disease, know the specialists who need to care for a patient with a specific diagnosis, and have access to schedules and offices to make it all happen in a coordinated fashion. Why see a surgeon first if chemotherapy is your best therapy up front? Likewise, why see the radiation oncologist if you choose surgery that eliminates the need for radiation, as often occurs in breast cancer. Worse, why choose a mastectomy if the patient wishes to avoid the six weeks of radiation only to learn that radiation is indicated because of the positive lymph nodes. Each specialist brings their expertise to the table, real or virtual, in multidisciplinary care. A coordinated approach with a dedicated navigator avoids misunderstandings, duplication of tests, and multiple visits and days off from work. It alleviates the anxiety of “not knowing what comes next” from an already life-altering situation.

Second, ask if the specialist you are seeing works with a select group of providers regarding your type of cancer on a regular basis. How many cases of your type of cancer do they see? A physician who makes a commitment to multidisciplinary care does so for one or two diseases, not everything. There is too much to know and too little time to know it all to do everything well. A generalist can do just fine so long as they coordinate with the multidisciplinary team, follow established guidelines and are willing to be measured by their cancer program for compliance to established standards.

Third, ask if the cancer program you are going to adheres to established guidelines and which ones—are they accredited by the American College of Surgeons, the National Accreditation Program for Breast Centers, etc? These credentialing bodies affirm that your care will be coordinated in a multidisciplinary fashion.

Last, ask if the navigator has the ability to coordinate your care from diagnosis through your disease continuum.  Are there rehabilitation services available, survivorship services, support groups, counseling for family members, financial counselors, etc?

Multidisciplinary care is just that, many disciplines coming together. Care of the patient is not just about THE procedure, it is about the whole patient. I often say to young physicians that although I give chemotherapy, the patient gets it all, surgery, radiation, etc, and life after cancer. We have to be cognizant of that and provide those services for every patient, regardless of their zip code.

An ASCO member since 2001, Dr. Mulvey has served on the Quality of Care Committee, Value in Cancer Care Task Force, State Affiliate Council, Cancer Education Committee, and Best of ASCO Planning Committee. She has served as Chair of the Clinical Practice Committee and on the Editorial Boards of the Journal of Clinical Oncology and Journal of Oncology Practice.Dr. Mulvey was honored with the 2009 Goodspeed Chair Award and Lecture for Quality Care from Southcoast Hospitals Group. She has served on the Cancer Quality Alliance and as Chair of the Oncology Carrier Advisory Committee. In addition to serving on the Boards of Directors of numerous Massachusetts hospitals, Dr. Mulvey was a volunteer with the Bridge Over Troubled Waters Medical Van serving homeless youth. Dr. Mulvey received her medical degree from Tufts University School of Medicine, and completed her internship, residency, and fellowship at New England Medical Center. She completed a research and clinical fellowship at Massachusetts General Hospital and took an intensive course in cancer genetics and risk assessment at City of Hope Cancer Center. She has previously worked as a physician at other community practices in Massachusetts, including East Boston Neighborhood Health Center and Commonwealth Hematology Oncology, where she also served as President and CEO. She has worked as an instructor at Harvard Medical School and as an Assistant Professor at Tufts University School of Medicine. The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Marlene King Discusses Living with Metastatic Breast Cancer and Collaborative Decision-Making with Her Oncologist

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Marlene King was diagnosed with Ductal Carcinoma in Situ (DCIS) in 2008 at the age of 48, and she elected to have a lumpectomy, chemotherapy and radiation.  After treatments the cancer seemed to be in remission.   In 2011, the cancer returned and she decided it would be best to have to a double mastectomy and reconstructive surgery. However, one year later in 2012, Marlene was diagnosed with stage 4 metastatic breast cancer; the prognosis for life expectancy 4-36 months.   During this time, Marlene decided to connect with METAvivor and overtime made it her priority to be an activist through the organization in raising awareness about the facts about metastatic (stage 4) breast cancer. She is currently a member of the METAvivor Board of Directors. METAvivor exists to sustain hope for those living with metastatic breast cancer.

How Do You Approach Shared Decision-Making with Your Oncologist?

Marlene recently joined us as a panelist at the NCCS Cancer Policy Roundtable, where she shared her perspective on how cancer patients and oncology professionals can collaborate in decision-making that will improve care planning and coordination. In this interview, Marlene discusses her relationship with her oncologist, which started in 2008. In her experience, decision-making is a shared process that includes herself, her husband, and her oncologist.

The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

20years

Guest Post by Dr. Michael Neuss Introduces the Third Imperatives Principle: Standards of Care Should Be Driven by Quality of Care

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Michael Neuss, m.D., VICC and Hem/Onc by Susan Urmy

Guest Post by Dr. Michael Neuss

This guest post is part of the 2015 Cancer Policy Matters “The Imperatives for Quality Cancer Care: 20 Years Later” blog series. The third principle from the Imperatives for Quality Cancer Care states, “Standards of cancer care should be driven by the quality of care, not only by the cost of care, and should include participation in clinical trials and quality of life considerations.”

There are a dozen principles in the National Coalition for Cancer Survivorship Imperatives for Quality Cancer Care, and both those who wrote them 20 years ago and those of us who reflect on the principles now surely realize that “Quality,” as defined in that report, is a comprehensive and holistic concept.  It addresses issues including access, patient autonomy, and the technical skills of the multidisciplinary care team.  Furthermore, these concepts are relevant and important across the continuum from prevention, through screening, diagnosis and treatment, to survivorship and ultimately, to the care delivered at the end of life.

The principles are directed expansively to “defining quality cancer care- a complex challenge that has come to the forefront in an era marked by cost-driven health care plans.”  The third standard, the focus of this posting, says in part, “Standards of cancer care should be driven by the quality of care, not by the cost of care.”  Additionally, there is emphasis regarding the importance of supporting research, and the inclusion of quality of life considerations in our definition of “quality.”

It is important to note that this principle does not demand that the cost of care be ignored but rather only that this not be the sole measure of quality.  Looking from the context of today’s environment, it seems we’ve achieved at least one part of this principle by subtly pivoting our focus from only cost to one considering value.  This remarkable shift has been welcomed by physicians, policy makers, and even patients who need information regarding the magnitude of their personal expenses in order to make informed decisions about care.

We are also doing better addressing patient experience regarding their disease and its treatment, whether through the focus of patient centered outcomes, as revealed in PCORI research, or in any of a number of measurement programs designed and administered by providers, governmental agencies, or professional organizations.

In fact, in contemplating this third important Principle, we’ve only fallen short in one area- the inclusion of clinical research in our standard for care.  The rate of “treatment on trial” is low and steady.  Despite the Affordable Care Act’s focus on this domain, two very large programs have explicitly excluded this requirement.  First, self-insured plans are not required to cover this enterprise and more often than ideally, they don’t.  Second, the CMS Innovation Center, in their otherwise encouraging and helpful Oncology Care Model, hasn’t included an accommodation for patients being treated while enrolled on therapeutic clinical trials except indirectly through payment targets which are based on provider’s experience.  Though this leaves room for a stable per patient research expense, it will discourage research treatment of patients included in this care model.  These exceptions, though perhaps not relevant to most patients, are not helpful.

While it’s clear in this context that we need to go even further, all of us, including our patients, their families, and those of us honored to be involved in providing care, are grateful for both the improvements we’ve made and the commitment to continue to improve the quality of care.  Our patients deserve no less.

Dr. Michael Neuss is the Chief-Medical Officer of the Vanderbilt-Ingram Cancer Center in Nashville, Tennessee and considers himself privileged to be trusted by his patients as their medical oncologist for over 25 years. The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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WCOE: Shared Decision-Making and Getting Doctors to Listen

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What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

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Decision-Making in Cancer Care: Communication (INFOGRAPHIC)

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The second principle of the Imperatives for Quality Cancer Care states, “Quality cancer care should be available in a health care system whose standards and guidelines are developed in consideration of treating the whole person with cancer. Health care plans must regard the cancer patient as an autonomous individual who has the right to be involved in decisions about his or her care.” This infographic illustrates some key issues in communication, including discussing prognosis and end-of-life decisions in cancer care.

Download this infographic as an image file by clicking here.

20years

Guest Post: Palliative Care in Oncology—We’ve Come a Long Way, Baby …But Let’s Not Rest on Our Laurels

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Richard payne

Guest Post by Richard Payne, M.D.

“The good physician treats the disease; the great physician treats the patient who has the disease.” -William Osler

Since the creation of the National Cancer Act  in 1971, the medical establishment—and indeed our entire society—has taken up the powerful metaphor of a “war on cancer” as the approach to attacking and overcoming this dreaded disease.  This organizing metaphor and paradigm has the advantage of mobilizing intellectual, financial and a variety of human resources to attack cancer, and there have been many successes, and steady progress against what has been aptly described as the “Emperor of All Maladies.”  However, one of the unfortunate aspects of fighting a war is the occurrence of “collateral damage”—unintended negative consequences of our efforts that are tolerated to achieve necessary ends.  In this regard, the collateral damage that we have often inflicted on patients and families experiencing cancer is a denial of the physical, emotional and spiritual toll of the disease and its treatments.   However, the emergence of palliative care—an approach to cancer care that addresses the physical, emotional and spiritual well-being of patients by focusing on open and honest communication, shared decision making , medically appropriate goal setting, and symptom management—has been a welcomed and effective response to the shortcomings in quality cancer care that are imposed by the limitations of the “war on cancer “ campaign.

At the initiation of the modern war on cancer in the 1970’s, it is fair to say that most oncologists were of the mindset that the best way to palliate is to cure.  However, this philosophy is obviously compromised by the scarcity of curative options for most cancers, and minimizes the suffering imposed by treatments.   Over the next decades, reports by the Institute of Medicine [1], [2] and the emergence of  research and multidisciplinary care teams in cancer centers, with the goal of providing better pain and symptom management and general end-of-life care, emphasized palliative care as essential to quality cancer care.  Responding to these trends and demonstrated needs, in 1998, The American Society of Clinical Oncology’s (ASCO) Task Force on Cancer Care at the End of Life affirmed  that “a humane  system of cancer care…is responsive to the patient’s wishes…is based on truthful, sensitive, empathic communication with the patient…optimizes quality of life throughout  the course of an illness through meticulous attention to the myriad physical, spiritual, and psychosocial needs of the patient and family.” There are now several clinical trials attesting to the effectiveness of palliative care in oncology settings. Results include prolonged survival in patients with advanced lung cancer, improved patient satisfaction, lower costs and absence of harm.  In 2013 ASCO issued a provisional clinical opinion calling for more complete integration of palliative care into standard oncology care.[3]

So, without question we have come a long way in the acceptance of the legitimacy of palliative care in oncology, and the need to expand access of this care to patients and families.   Many, if not most of the comprehensive cancer centers now have palliative care programs in place.  I now see the best and brightest of students and trainees in medicine and nursing electing to train and pursue careers in palliative care, and there are now academic role models in medicine and nursing schools to educate them.   These are all wonderful developments and assure a bright future for the field, but most importantly for cancer patients who need and deserve this type of care.  However, many challenges remain.   Although the evidentiary base for the effectiveness of palliative interventions in oncology is growing, more basic, health service and comparative effectiveness research needs to be supported by the National Cancer Institute, The American Cancer Society, Patient Centered Outcomes Research Institute (PCORI) and other public and private agencies that fund oncology research.   Palliative care skills and competencies such as basic management of pain and other physical and emotional symptoms common to cancer patients —and improved communication skills training in discussing prognosis, goals of treatment, etc. —must be integrated into the training of all oncologists so that they can integrate these skills into the primary practice of oncology.[4]   To achieve the excellence in doctoring and caring that Sir William Osler’s quote describes, we must provide palliative care education and training integrated into oncology training, standardize the definition of palliative care as well as the tools for patient assessment, and make a commitment to ongoing evaluation of programs.[5]   This is the way to sustain quality cancer care.

About the Author: Richard Payne, M.D. is the Esther Colliflower Professor of Medicine and Divinity at Duke Divinity School, Duke University. He is a graduate of Yale College and Harvard Medical School, and did post graduate training in internal medicine (Peter Bent Brigham Hospital), neurology (New York Hospital), neuro-oncology, pain management and palliative care (Memorial Sloan-Kettering Cancer Center). He has also served on the National Coalition for Cancer Survivorship (NCCS) Board. The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

[1] Approaching Death : Improving Care at the End of Life / Committee on Care at the End of Life, Division of Health Care Services, Institute of Medicine ; Marilyn J. Field and Christine K. Cassel, editors. National Academy of Science, 1997

[2]  Improving Palliative Care for Cancer.  Kathleen M.Foley and Hellen Gelband, Editors. National Academy of Science, 2003

[3] Smith T, Temin S, Alesi ER et al. American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care. Journal of Clinical Oncology 2012;30:880-887.

[4] Quill TE, Abernethy AP. Generalist plus Specialist Palliative Care-Creating a More Sustainable Model. New Engl J Med 2013;368:1173-1175.

[5] Von Roenn JH, Voltz R, Serrie A. Barriers and Approaches to the Successful Integration of Palliative Care and Oncology Practice. Journal of the National Comprehensive Cancer Network 2013;11 (Suppl 1):511-516.

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WCOE: New CMS Oncology Care Model Offers Hope, End of Life Planning, and ACA Questions Answered

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What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

 

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Being Mortal Is Far From Being Morbid: Responding to FRONTLINE’s Profile of Surgeon Atul Gawande and End of Life Care

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Dr. Atul Gawande (Photo Credit Aubrey Calo)

On public television stations nationwide, the award-winning FRONTLINE series aired a program on February 10th based on the work of noted surgeon and writer, Atul Gawande.  In addition to Gawande’s many clinical and surgical talents, he has the rare gift of writing articles and books for all of us, no matter what our level of medical literacy.   FRONTLINE’s report, “Being Mortal,” based on Gawande’s book, Being Mortal: Medicine and What Matters in the End, explored the challenges we all face in confronting our mortality and how medicine can help or hinder the process.

Being mortal is far from being morbid; in fact, the topic of dying is the one experience in our lives that will be shared by everyone. Yet it remains the third rail of conversation in many families. And it is even more rare among friends, many of whom will be present at some time with us during the dying process if we have an illness that is considered incurable.

Gawande’s book has elevated the conversation about how we as a country can do better at caring for people as they age or face terminal illness, and ultimately die. The FRONTLINE report adds another dimension to his powerful work by creating an intimate window into the excruciating conversations between physicians (and nurses) and patients and families.

In addition to the intensely personal profiles, Gawande shared his family’s experience when his father, also a physician, was diagnosed with cancer. Early conversations about what mattered most to his father served as a guidepost for making decisions along the way. As his disease progressed, his options were different, but always measured against his concept of a life worth living.

It was just as powerful to see physicians struggle to talk with patients, sometimes failing to effectively communicate the circumstances, as it was to see patients who were able to advocate and make their wishes known. Rather than solely focusing on longevity, patients and their families often expressed a desire to meet tangible, realistic goals, including spending as little time in the hospital as possible near end of life and having quality time to spend with family and friends at home.

Throughout,  it was clear that the physicians cared deeply for their patients and wanted to do better but were hindered by their inability to speak without using medical jargon and lack of training on how to have these difficult conversations. Palliative care physicians are experts in having difficult conversations and can support oncologists and even train physicians to communicate better. But patients need clear communication with all of their providers, not just palliative care specialists.  One concern that has been raised by some and yet was not a focus in the program is the shortage of specialists in this relatively new specialty field.

Though many obstacles remain in ensuring that more patients are dying well or dying on their own terms, Gawande’s work has advanced the conversation. In the epilogue to his book, Gawande writes,

“Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”

Gawande urged people to talk with their loved ones about what matters most and encouraged the discussion with a Twitter hashtag #WhatMattersMost.

 

 

 

20years

Revisiting the Second Principle of the Imperatives for Quality Cancer Care—Treating the Whole Person

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This month, as part of the 20 Years Later series, we are revisiting the second principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability. The second principle states, “Quality cancer care should be available in a health care system whose standards and guidelines are developed in consideration of treating the whole person with cancer. Health care plans must regard the cancer patient as an autonomous individual who has the right to be involved in decisions about his or her care.” This principle was identified 20 years ago as cancer care was disease-centered and often did not include the values of the individual. This month, we will consider three components of treating the whole person:

  • Psychosocial care,
  • Shared decision-making, and
  • Early integration of palliative care.

As reported in the Imperatives, the health care system in the mid-1990s viewed psychosocial care as an adjunct, as “value added,” rather than an essential component of treatment. In 1995, and in the years since, NCCS has advocated that psychosocial services should be provided for every person with cancer and must emphasize continuity, comprehensiveness, and a multidisciplinary approach. In addition, NCCS was a leader in asserting that the community needed to make greater investment in psychological oncology research to inform care standards and guidelines to ensure these needs were being met. Since 1995, many in the cancer community have rallied behind this principle and made concentrated efforts to incorporate psychosocial care into cancer care, however gaps still remain.

Take Charge

We have made two simple tools to help patients on their journey: The Know Yourself Worksheet and Essential Questions to Ask Your Doctor.

Treating the whole person also requires shared decision-making, where treatment decisions are made jointly between the provider and the individual with cancer and his or her family. Our patient resources teach self-advocacy, so that survivors can be partners in their care. Last year, we launched two tools to help patients express their needs, values, and preferences for their care and prepare for conversations with their care team and family members.

This month we will also look at early integration of palliative care as an additional component of treating the whole person. NCCS believes that palliative for cancer survivors must begin from the moment of diagnosis and continue for as long as it is needed. Palliative care is often equated with hospice or end-of-life care. In fact, palliative care should be seen as extra support to manage the physical and emotional effects of treatment. Palliative care should be available to anyone undergoing treatment for cancer or other serious diseases. This misconception on the part of both patients and providers does not serve patients well.

We look forward to hearing from survivors, community partners, and providers to get their perspective on progress and discuss how this principle relates to 21st century care. To begin this month, we ask you to watch a video clip from an interview NCCS CEO Shelley Fuld Nasso did with Susan Gubar in the Fall of 2014. Susan writes a series for The New York Times ‘Well Blog’ titled, Living with Cancer. In the clip below Susan discusses the importance of shared decision-making and the concept of doctor informative and doctor interpretive.

We would like to hear from you. In your experience, in what ways does the cancer care system succeed and fail at treating the whole person with cancer?

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