Where:
New York

When:
December 8, 2005

Testimony at New York State Assembly Public Hearing on
The Family Health Care Decision Act (A.5406-A)
Thursday, December 8, 2005, 250 Broadway, New York, NY

My name is Susan M. Cohen and I am the Chair of the New York State Breast Cancer Network. The Network is the only statewide network of community-based breast cancer organizations in New York and, as far as we can ascertain, in the country.

We currently have over 20 member groups comprised of breast cancer-related service organizations and advocacy groups. Each year our member organizations provide support and education services to over 100,000 people and families affected by breast cancer throughout the state in communities that stretch from Buffalo to Long Island.

I am here to testify about the need for legislation such as thisthe importance of establishing procedures, criteria, and safeguards that will provide legal legitimacy for family members and those close to an incapacitated person to make health care decisions for that person when he or she is unable to do so and has not executed any advance directives, such as a health care proxy and/or a living will. Although what I say could apply to any life-threatening disease, I will speak from the disease I know best, which is breast cancer.
I am a 12-year breast cancer survivor. My family has a history of breast cancer on both sides. Everyone who got breast cancer on my mothers side of the family died of the disease. Everyone who got breast cancer on my fathers side of the family lived and eventually died of something else. I have also watched all too many women die of the disease as an active member of SHARE, a breast cancer support, education, and advocacy group in New York City that provides peer support and other services to women diagnosed with breast or ovarian cancer. In addition, my work as a legal services lawyer, representing poor people of many diverse cultures for the past 20 or so years, has exposed me to the differing perceptions of disease and the multi-faceted approaches to decision-making traditionally adopted by various cultures during times of health-related crisis.

As a result of my family history and my SHARE support and advocacy efforts, I have experienced breast cancer from all sides. I know how it affected me personally as the patient and how it affected me as the daughter, niece, and cousin of the patient and also as the caregiver, support person, and friend of so many, many women. As the chair of the New York State Breast Cancer Network, I have heard stories from around the state similar to my own experiences, from urban, suburban, and rural areas. As a lawyer for poor communities, I have witnessed ways of responding to disease and making decisions that are informed by a different conceptual framework and world view than those that emanate from my simple Jewish American heritage and tradition.

I speak to you today through the lens of all of this experience to emphasize and underscore the importance of this legislation. When you are diagnosed with breast cancer, your life spins out of control. You think youre going to die. You try to maintain a semblance of normalcy amid tremendous fear and anxiety.

You embark upon a journey that amounts to a full-time job. You find yourself immersed in a sea of confusion on a landscape that is totally unfamiliar with a language that you dont understand and have to learn fast, since your life may well depend on the choices you make at the beginning of the process. You dont have either the time or the energy to focus on health care proxies and living wills. You must sort through an array of medical choices that have no clear right or wrong answers and figure out what you need to do to address your disease and keep your life together.
During and after treatment, you continue to drown under the weight of medical bills that flow into your life in an unending stream. You them must divert your limited reserve of energy to amassing and sorting piles of medical bills, submitting insurance claims, and dealing with claim denials.

You do not want to think about who should make decisions for you or what your preferences would be when you can no longer decide this on your own because that sounds too much like planning for your incapacity and death right up front at the beginning of the process. You are engaged in a life-and-death struggle to stay alive; you are not about to think directly about your possible death. Doing so undermines hope, which is essential at every stage of a breast cancer diagnosis and for many years after.

This is especially true for younger women, whose breast cancer tends to be more lethal and comes on more suddenly and aggressively. Time and time again, young women tell us that their doctors told them they shouldnt worry because theyre too young to get breast cancer. As a result, they are totally unprepared for a diagnosis and are often diagnosed late because of that medical mindset. They are also consumed with managing treatment decisions and after effects and crazed about how this will affect their young children not only in the short run while they are undergoing treatment but also what the ultimate fate of their young children will be in the long run if they do not survive. For them, the future of their children is more important and immediate than who will make decisions for them or what treatment modalities they do or do not want at the end of the line.

Other factors cloud ones ability to focus on executing advance directives. Certain treatments interfere with cognitive function, as does pain, fear, grief, and anxiety. Metastases to the brain can also catapult someone into a state of incapacity and quickly compromise the ability to make clear and rational decisions.

Various cultures do not approach planning for incapacity and death by writing instructions ahead of time and choosing one person to carry them out. Indeed such ways of dealing with disease are totally foreign to them. They may not even know that such options exist.

For some age groups and cultures breast cancer and other diseases evoke a great deal of shame and embarrassment. Illness is regarded as weakness. People feel guilty, that theyve done something wrong, something to bring on this disease, that theyre somehow responsible for their plightthey didnt eat right, they didnt exercise, they were under too much stress, etc., etc. Some cultures believe that its better for someone not to know they may become incapacitated, much less die, because knowing this compromises their immune system. Other cultures believe that in times of health crisis, decisions are made by the patients family, not by the patient.

Why am I telling you all of this? Im doing so to make the point that many factors influence, consciously or unconsciously, whether a person fills out an advance directive. Not doing so does not mean that the person has not made decisions about life-sustaining treatment and in no way diminishes the need for someone to make such decisions for a person who is no longer capable of making them for himself or herself or of articulating such decisions at the appropriate time.

The most appropriate people to make such decisions are family members and close friends, since they are the people most likely to know the persons choices or to figure out what they would be, given that persons spiritual or moral beliefs or world view, and to base their decisions on the totality of the factors to come up with decisions that are in the best interests of the patient.

The proposed legislation sets out a procedure for doing this. Its criteria are clear and its safeguards are sufficient. It looks at various contexts and patient groups in fashioning procedures appropriate to the varied circumstances and groupings of people involved.

Watching someone linger where treatment destroys the patients quality of life without offering any realistic hope or possibility for cure, recovery, or relief of suffering is a searing experience that scars family members and friends for life. Forcing a person to go through that ordeal does nothing to help the patient but, rather, imposes an excessive burden on the patient with no corresponding or compensating benefit.

This legislation recognizes that reality and attempts to ameliorate this needless suffering not only for the patient but also for the patients family and friends. This legislation is desperately needed and long overdue. I urge the Assembly to pass it and to bring all necessary pressure and persuasion to bear on the Senate to move this bill out of committee and to pass it as well.

Thank you very much for your consideration of these remarks and of the experience on which they are based.