The High Cost of Cancer To Patients and Their Families

1. The High Cost of CancerTo Patients and Their Families Patrice Al-Shatti, LMSW, OSW-C Oncology Social Worker Mayo Clinic alshatti.patrice@mayo.edu

2. “Psychological and social problems created or exacerbated by cancer—including depression and other emotional problems; lack of information or skills needed to manage the illness; lack of transportation or other resources; and disruptions in work, school, and family life—cause additional suffering, weaken adherence to prescribed treatments, and threaten patients’ return to health.” Cancer Care for the Whole Patient, Meeting Psychosocial Health Needs. Institute of Medicine. 2008.

3. Cancer Means the Shattering of the Assumptive World “I just think I am too young to die. I worked too damn hard all my life not to get my pension… Am I going to die before I live to see my grandkids grow?” Patient interview in “Women Living with Ovarian Cancer: Dealing With an Early Death”

4. Mental Health • Mental health disorders such as depression and anxiety are common. • 3 to 4% of cancer patients have all of the symptoms of Post-Traumatic Stress Disorder. • 20% of patients with early stage cancer have some PTSD symptoms. • Up to 80% of patients with recurrent cancer had symptoms. • (Maria Gurevich) •  Patients may also experience more generalized worry; fear for the future; inability to make plans; uncertainty and a heightened sense of vulnerability; and other worries, such as about the possible development of a second cancer, changes in sexual function and reproductive ability, and changes in one’s role within the family and other relationships (Institute of Medicine, 2006)

5. In addition to coping with the worry and stress caused by diagnosis, patients with cancer and their families must cope with: • Stress caused by physically demanding treatments for the illness. • Late and delayed effects of treatment. • The challenges of caregiving. Families provide hands on personal and nursing care valued at more than $1 billion annually. These effects contribute to: • emotional distress • mental health problems among cancer patients and caregivers. • social problems, such as the inability to work and reduced income. They are magnified if psychological and social stressors existed before the cancer, such as low income, lack of health insurance, and weak social supports. Indeed, physical, psychological, and social stressors are often intertwined, both resulting from, and contributing to, each other.

6. Children and Parents • Stress is particularly great for parents of children with cancer. • Studies consistently have shown that parents have higher rates of PTSD than either their children or adult cancer survivors, suggesting that parenting a child with cancer may be more traumatic than actually having the illness (Bruce, 2006). • Children of cancer patients also are a vulnerable group, with frequent psychological problems, acting-out behaviors, and problems in school (Lederberg, 1998). • Siblings of pediatric cancer patients may experience their own fears and anxieties, and are at risk for mental health and social problems into adulthood. (Super Sibs)

7. Other Social Problems that Can Adversely Affect Care • Poor Communication: 15% of patients report leaving the doctor’s office without getting questions answered. • Transportation: Two large national charitable organizations alone report 100,000 requests annually for rides to treatment. • Lack of Insurance: 1 in 4 uninsured person with a cancer diagnosis delays diagnosis and/or treatment. • Gaps in Insurance: • High cost sharing results in high out of pocket costs • People who depend on work for insurance, may lose coverage and public options are often unavailable or involve insurmountable barriers • Cancer patients cannot find coverage in the private market Sources: Cancer Care for the Whole Patient (2008) and Spending to Survive (2009)

8. Finances • $89 billion was spent treating cancer in 2007 (Kaiser Foundation, 2009) • Medical bills and illnesses are involved in over 62% of U.S. personal bankruptcies (American Journal of Medicine. June, 2009) • 5% of bankruptcies in 2001 were related to medical costs associated with cancer (Kaiser Foundation, 2009) • According to a study by the Association of Oncology Social Work (2009) • 68% of families facing cancer experience financial hardship due to medical bills • 55% of patients say that financial stress negatively affects their recovery • 46% of patients who experience a financial burden from their cancer, cut back on necessary expenses such as food, to pay for treatment. • 6% sold a home or relocated due to financial stress • Only 33% of patients discuss the cost of treatment physicians and only half are comfortable speaking to any health professional about this topic. • Half of caregivers try to shield patients from the financial aspects of cancer treatment

9. Patients in every socio-demographic group are vulnerable to financial difficulties as a result of a cancer diagnosis, and their vulnerability is a function both of their own financial and employment circumstances and the support available to them from those around them. • Some groups of patients appear particularly vulnerable to the adverse financial effects of a cancer diagnosis, in particular those with dependants and those who are working at the time of diagnosis. • Patients, and their families, who live in remote areas may experience particular difficulties due to having to travel long distances for treatment. (The Financial Impact of a Cancer Diagnosis. Linda Sharp, Aileen Timmons. 2010) “I’m broke right now, actually. I pay everything but I’m running into the situation where I am borrowing from Peter to pay Paul.” Keith, diagnosed with stomach cancer

10. Sample Needs of Advanced Cancer Patients Living at HomeAnalysis of the charts of 27 breast, lung, prostate, and pediatric cancer patients on a home outreach program. Maricopa County. 2008 Staff Intervention themes: • Non-medical financial needs: i.e. income, transportation, basic living needs • Medical financial needs: i.e. prescription assistance, medical bills • Psycho-social support: i.e. assistance with problem solving and communication • Advanced planning: i.e. assistance with advanced directives, discussing views and values concerning options for care and treatment • Navigating the healthcare system: i.e. advocacy with care providers • Caregiving support: i.e. options for care in the home • Symptom management/health education: i.e. providing and discussing patient education materials

11. “It is not possible to deliver good-quality cancer care without using existing approaches, tools, and resources to address patients’ psychosocial health needs. All patients with cancer and their families should expect and receive cancer care that ensures the provision of appropriate psychosocial health services.” Cancer Care for the Whole Patient, Meeting Psychosocial Health Needs. Institute of Medicine. 2008.