For those on the margins, access to cancer care is a struggle

asco-logoSarah* is a new patient, referred to me because she is having difficulty deciding on treatment for breast cancer. I don’t know much else about her, and a quick review of her electronic medical record tells me that she is 48 years old and has hormone-positive disease in her left breast. There are numerous missed appointments, and it appears that her biopsy was well over six months ago. I suspect that I’m in for an interesting appointment. Most newly diagnosed patients want treatment immediately, as fast as we can organize it. Treatment decision delays and missed appointments suggest that there is a backstory that is complicating the process.

Sarah arrives for her appointment about 10 minutes late. Parking is always a problem for our patients, and I am used to this. She is accompanied by an older woman using a walker who introduces herself as Ray*, Sarah’s older sister. Ray maneuvers her walker into my office and sits down in one of the chairs with a loud sigh. Sarah is still standing outside my office and appears reluctant to enter.

“Come on, Sarah,” her sister says loudly, “No one’s going to bite you… get in here! We’re already late.”

I close the door behind Sarah, who has entered my office with some hesitation, and take my seat and wait while Sarah sits down. I introduce myself again and explain that Sarah has been referred to me for help with making a treatment decision. Ray has a binder that she takes out of her large purse and she spends some time searching for a pen and finding a blank page to write on. As she turns the pages in the binder, she tells me that she is the proxy medical decision maker for Sarah, who has a long history of bipolar disorder, alcoholism, and general neglect of her health. Ray seems exasperated as she spells this out, all the time not making eye contact with me.

I glance over at Sarah, who is now sitting in the chair and looking around my office. There is a lot of “stuff” in my office — framed award certificates, pictures of my grandchildren, piles of papers, shelves of books. I silently remind myself that I need to de-clutter and try to catch Sarah’s attention. As I do I quickly assess her physical appearance. Her hair appears unwashed but she has combed it, and it clings to her skull. There are stains on her blouse, her shoes have seen much better days, and despite it being winter, she is not wearing tights or leggings under her skirt that has a ripped hem. She has dropped her coat on the floor next to her chair, and it looks too light for the weather.

I address her first: “Hello, Sarah. Thank you for coming in to see me today. Can you tell me what you understand about what we are going to talk about today?”

Her response is a little muffled, but she says that she has cancer and the doctors want to cut her breast off, and she doesn’t want them to do that. With some gentle probing she tells me that she is unhappy with her life and if she doesn’t have the surgery, she will just die and it will be all over. Her sister interrupts every now and then, but Sarah seems to have found her voice, and she describes a life of significant suffering. She lives, for now, in a downtown hotel that I know is what most of us would call a “fleabag hotel.” She drinks every day and has for years, and she is not willing to stop that now. She has few friends and is always lonely. Ray is her only family member who cares about her and, she adds, is really bossy. At this Ray chuckles and for a brief moment, the mood in my office lightens.

We talk more about what it might mean to live with and die of untreated breast cancer. I make suggestions about where we can find additional resources for her to make her life more comfortable so that she might feel less hopeless. I try to focus on what she may want to do rather than what she should give up, and as we speak, she becomes visibly more engaged, and perhaps even a tiny bit hopeful. When they leave, with a follow-up appointment with me arranged, Ray is standing more upright, and Sarah seems less distracted.

Over the next week, referrals are arranged and other appointments made. Safer and more suitable accommodation is found with a local charity organization; this will allow for a home care nurse to visit Sarah after her surgery to check her dressing and provide for her medical needs. The social worker is helping her access financial assistance that she is eligible for. She has a surgery date, and her sister tells me she feels less burdened with the support we have provided. There might just be a chance that there is a positive outcome here but there are more obstacles that they will have to face. I hope that we can help Sarah and Ray face and overcome those obstacles and that they will be willing to let us help.

I have spent a significant amount of time thinking about Sarah and her sister. I have always recognized the importance of the context of my patients’ lives in how they cope with the chaos of the cancer experience. Negotiating the complex world of cancer care is challenging for our most educated and highly resourceful patients and their families; for those with social problems, the process may seem so overwhelming that they are tempted to, and may, give up. It is important to recognize that some of our patients lead chaotic lives and we can’t expect them to be able to do what our other more advantaged patients are capable of. We need to be careful of judging them and labeling them as non-compliant. They are usually just trying their best under difficult or even impossible situations. There is so much suffering for patients whose lives are not well ordered or organized. For those who live on the margins, access to health care remains a struggle mirroring the struggle of their everyday lives. Sarah and her sister Ray are perhaps the luckier ones, if being diagnosed with cancer can be called luck.

* Names and details changed for patient privacy.

Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.

Image credit: Shutterstock.com

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