As director of the Cancer Legal Resource Center (CLC), a program of Disability Rights Legal Center, I and my team provide legal information and referrals to people coping with cancer and their families. Therefore, I am intimately familiar with the American health care system. While some may disagree, the injustices that I have heard about from patients, both rich and poor, have solidified for me the idea that health care is a fundamental right. It should be ensured for all citizens on Earth, regardless of nationality, income level, race, gender, etc. If only it were that simple.
I recognize that any sort of massive change is impossible overnight. Just look at the Affordable Care Act and how much negotiating it took to pass it. Seven years later, there are still issues, complaints and changes being rolled out, and threats to dismantle the system entirely. So, while I am unable to propose a solution at this time to ensuring not only access to health care for everyone but also actual health coverage, I can make some suggestions for improving health outcomes by looking at the whole patient.
Injury, illness and other medical issues do not occur in a vacuum. They happen to real people, who have jobs, are part of families and part of communities. Additionally, social, economic and environmental factors surrounding where people live and work have an effect on health outcomes. When a family member is unable to go to work because he/she is sick and has to make choices about whether to spend money on a doctor’s visit or medication or feed and clothe his/her family, everyone in the family is affected, not just the person who is sick. It is important for medical professionals to spend more time looking at how illness impacts the whole patient, whole family and whole community.
One beneficial U.S. trend is increased integration between medical and legal services. The traditional way of thinking is that medical and legal professions are at odds. The general public often views attorneys as ambulance chasers out to make money or malpractice litigators responsible for increased malpractice insurance costs, which help drive up health care costs. While some of that may be true, tremendous potential exists for medical and legal professionals to work together.
Take, for example, the American Bar Association (ABA) and American Medical Association (AMA). The ABA’s mission is to “serve equally our members, our profession and the public by defending liberty and delivering justice as the national representative of the legal profession” while the AMA’s mission is to “promote the art and science of medicine and the betterment of public health.” Doctors take an oath to “do no harm” while lawyers also pledge to act ethically. At the end of the day, doctors and lawyers are ultimately both working toward solving problems and improving the lives of their patients and clients.
The need for legal integration into the medical community furthers the goals of both doctors and lawyers. One way this has been done is through use of Medical-Legal Partnerships (MLPs). MLPs often involve locating an attorney or legal clinic at a hospital or medical clinic, where doctors, nurses and other health professionals are able to refer their patients directly to an attorney on-site who can help with legal issues. To date, formal Medical-Legal Partnerships have been established in 294 health care institutions in 41 states.
MLPs, or other legal assistance programs, geared toward providing assistance to people with medical, legal and social needs can be integral in improving patient outcomes. Having an attorney or a referral to a legal service provider at the hospital can be extremely helpful, especially for those who may not otherwise seek legal assistance. For example, if a patient lacked a will or other advance planning documents when he/she arrived at the hospital, hospital staff could connect the patient with an attorney who could help get his/her affairs in order. This often provides patient and family with more piece of mind, reduced stress and more energy to focus on getting well.
The American Society of Clinical Oncologists is concerned about newly approved cancer drugs, which cost an average of $10,000 per month with some as high as $30,000 per month. Patients pay 20 to 30 percent (or more) out-of-pocket for drugs, thus making their annual cancer drug cost $24,000 to $36,000 in addition to other drug costs, health insurance premiums, provider and facility fees, plus lost income when they miss work or lose their jobs. This leaves many patients and their families desperate for assistance.
Hospital social workers warn that cost, stress and sickness prevent many cancer patients from affording vital legal support, which places them at risk of losing homes, jobs and dying without a will. A Cancer Council NSW survey reveals that nearly eight of 10 hospital social workers have patients who are plagued by legal issues while coping with the stress of cancer treatment, and at a time when many are unable to work. (http://www.cancercouncil.com.au/16672/news-media/latest-news-news-media/media-releases-news-room-news-media/a-lifeline-to-cancer-patients-swamped-by-legal-issues-2/#PWuD5hr2zGlo168y.99)
Additionally, the National Cancer Legal Service Network (NCLSN) says more than one-half of all households have one or more unmet legal needs. Most remain unresolved, thus resulting in more complications, financial issues and stress for those involved or affected. Legal needs are exacerbated by a cancer diagnosis, treatment and side-effects of the illness and medication, not only for the cancer patients but also their families. (Paul, E., Fullerton, D.F., Cohen, E., Lawton, E., Ryan, A., & Sandel, M. (2009). Medical-legal partnerships: Addressing competency needs through lawyers. Journal of Graduate Medical Education, 1(2), 304-9)
However, there is good news. An NCLSN survey of cancer patients who received legal assistance yielded impressive results: 75 percent of patients interviewed said legal assistance reduced stress, 50 percent reported that receiving legal assistance had positive ramifications on their families and loved ones, and 30 percent of participants reported that legal assistance helped them maintain their respective cancer treatment regimen. (Fleishman, S.B., Retkin, R., Brandfield, J., & Braun, V. (2005). The attorney as the newest member of the cancer treatment team. Journal of Clinical Oncology, 24(13):2123-2126.)
Another important example of how MLPs can be helpful involves sick children, who may need accommodations at school in order to keep up with their studies. If a special education attorney is on hand at the hospital, or if the health care team is trained to identify situations where legal intervention may be necessary or helpful, the attorney and doctors can work together to treat the whole patient, not just the medical issue.
People often look at me quizzically when I explain the work of the Cancer Legal Resource Center, which includes a toll-free number and online assistance program, know your rights workshops and publications on a wide-range of cancer-related legal issues. However, if one takes a moment to think beyond the walls of the hospital, he/she can see how legal issues can develop the moment someone gets sick or even makes a doctor’s appointment.
Many of us are lucky enough to work for employers that offer paid sick time, but far more do not have that luxury. If people do not receive paid sick time or exhaust their medical leave, they may be forced to resign, which usually means a loss of income and more expensive health insurance options. With a loss of income comes a loss of stability. Families become unable to pay rent or mortgage and car payments, and incur significant medical debt. They may be unaware of their rights to disability benefit programs or other forms of assistance.
Improving access to health care and health insurance absolutely need to be priorities, but the focus for the 21st century needs to be on treating the whole patient and addressing social determinants of health. Patients can no longer be treated simply as medical specimens because that’s just not how the real world works. Insurance is often tied to employment. Being sick can impact your ability to care for your family, earn your livelihood, and be a productive member of society. Training medical and legal professionals to work together is an important step forward in improving the health of all people regardless of income.
The Cancer Legal Resource Center (CLRC) provides invaluable, cancer-related legal information and resources to people nationwide. The success of the Center’s work is reflected in the enormous need for the information it provides. Throughout its 15-year history, CLRC has served more than one-half million people through its Telephone Assistance Line, conferences, seminars, workshops, education and outreach programs, and other cancer community activities. Unfortunately, a cancer diagnosis may carry with it a variety of legal issues, including insurance appeals, employment rights and leave time, access to health care and government benefits, and estate planning. These legal issues can cause people unnecessary worry, confusion and stress, and can be overwhelming. When these legal issues are not addressed, people may find that although they have lived through treatment, they have lost their homes, jobs or insurance coverage. Although it should not take legal resources to access health care, understand insurance options or preserve one’s job, it frequently does. For more information, please go to www.cancerlegalresources.org or call (866) THE-CLRC.
