Medical Schools could spend more time training doctors in communication skills and in thinking holistically and in bias reduction so ageism, racism, and heterosexism wouldn’t be such problems.
Asa part of my interview series with leaders in healthcare, I had the pleasure to interview Elizabeth Wood. Elizabeth Anne Wood is the author of Bound: A Daughter, a Domme and an End-of-Life Story. She is a SUNY Chancellors Award-winning Professor of Sociology at Nassau Community College in Garden City, NY. She is also Senior Strategist for Woodhull Freedom Foundation, the nation’s only human rights organization working full time to protect sexual freedom as a fundamental human right.
Thank you so much for doing this with us Elizabeth! Can you tell us a story about what brought you to this specific career path?
I grew up in a single-mom family where all kinds of things seemed wrong or unjust. At first these things seemed connected to the individual problems in my family. My mom was a recovering alcoholic. My parents were divorced. My dad died in a car accident. There was never enough money. My mom often seemed like she was on the edge of falling apart. There was an abusive second husband who didn’t last more than a couple of years. I was a depressed and anxious teenager.
When I got to college a lot of things happened but the one that’s most relevant here is that I discovered sociology, and sociology helped me understand that a lot of what I perceived as wrong and unjust, was, in fact, unjust, and it was produced by social arrangements that were not caused by anyone in my family. Discovering words for things like sexism, objectification, inequality, power, and social change gave me language for things I’d been thinking about for ages, but also gave me a sense of optimism: what was wrong could be fixed.
I focused on gender and sexuality because most of the things I wondered about connected back to restrictive gender roles and gender inequality. My mom’s inability to ever become the journalist she wanted to be was easier to understand once I learned about how the time women take out of the workforce to raise their kids (as my mom had done for the first 8 years of my life) put them at a lifelong disadvantage. My own depression and anxiety was easier to address once I felt free to rebel against the gender norms I’d never been able to conform to anyway. I studied strip clubs for my Ph.D. thesis because it was an excellent way to understand the power and performance involved in gendered interactions.
More recently my focus has focused on sexuality, health care, and aging because of my mother’s late-life sexual awakening as a Domme, a woman who exercising power over men who want to be erotically dominated. This happened in her late 50s and just a few years before she was diagnosed with kidney cancer and ended up on dialysis. Incredibly, dialysis and domination intersected in a very positive way in her life and she had an amazing three years until she was diagnosed with an aggressive terminal cancer that we couldn’t beat. Walking through that entire process with her, from sexual discovery through diagnosis and dying, as her daughter and as a sociologist who studies gender and sexuality, gave me an undeniably unique position from which to observe the ways that medicine and health care succeed, and the ways they fail.
Can you share the most interesting story that happened to you since you began leading your company?
One of the moments that stunned me, because it took me by surprise personally at the same time as it made perfect sense to me as a sociologist, was being told by a hospitalist caring for my mother that things might be easier if, some of the time, I would “just be the daughter.” I felt like I’d been punched in the stomach because isn’t taking care of their aging parents exactly what daughters are supposed to do? But she was making a distinction between being present as a patient advocate (what I did most of the time) and being present as a loving family member who is just there to offer encouragement, sympathy, and affection (which I did less easily).
In my case, my sister was playing the supportive cheerleader role from a distance while I played the patient advocacy, care management, and hands-on role. This suited my tendency to intellectualize things, but it didn’t help me bond with my mom during the last months of her life.
Adult daughters are the backbone of the elder care system in the United States. Researchers from Stanford University were quoted in a 2017 New York Times article, saying, “The best long-term care insurance in our country is a conscientious daughter.” Our story illustrates a problem for individuals who need to balance conflicting roles, families that need to figure out how to divide the labor of care work, and employers who need to figure out what to do when their workers need time off to care for aging or ill loved ones. As a society, we aren’t well equipped to deal with any of these problems!
Can you tell our readers a bit about why you are an authority in the healthcare field?
As I was saying a moment ago, I have a tendency to intellectualize things. Especially emotional things. So, when my mother was sick, I approached caring for her as a labor of love, but also as a research problem. I took tons of notes. In a sense, I was treating the situation as an autoethnography or a case study. I always had a notebook with me, and in those notebooks I kept detailed records of medical treatments, observations, vital signs, and questions I had for the wide assortment of health care providers managing my mother’s care. In the moment, those notebooks were essential for keeping large amounts of information organized and at my fingertips. Later, they, and the journal entries I made about my own thoughts and feelings, became data.
I also had lots of conversations — not formal interviews, but conversations — with doctors, nurses, physical therapists, with social workers and with friends and family members. Those conversations uncovered lots of cracks in the system, lots of frustrations, and also lots of rays of hope.
And I read. I read about cancer. I read about health care. I read about end-of-life issues.
What makes your company stand out? Can you share a story?
So often, when sex is part of a story it becomes the central focus of the story. And when a story is about aging or illness, it often excludes sex unless sex is central. Bound is different because, by incorporating my mother’s sexuality into the story we are encouraged to see her as a whole person and not just as a cancer patient, and yet we don’t see her as a sexualized person or as a person whose sexuality is the most important thing.
Bringing sex into the story also allows us to see ways that the health care system objectifies patients and relies on outmoded models of consent.
And the metaphor of bondage and domination is perfect for talking about cancer and the health care system. Part Two of Bound is called “The Hospital Domme Battles the Bondage of Bureaucracy,” and it is full of parallels between BDSM and hospital care that end up painting hospital care as the less welcoming and less caring environment.
Can you share with our readers about the innovations that you are bringing to and/or see in the healthcare industry? How do you envision that this might disrupt the status quo? Which “pain point” is this trying to address?
I advocate for clear sexual rights policies for residential care facilities, and for hospitals. When we’re hospitalized our sexualities are often stripped away from us, often unintentionally but also as an unintended effect of policy. Wouldn’t it be wonderful if there were workers whose job it was to help people address their sexual desires in the midst of their illnesses? What if every residential facility guaranteed privacy, allowed overnight guests, and prevented adult children from meddling in their parents’ sex lives. What if doctors and nurses were trained in sexual health and education, and in talking to patients about sex?
I also advocate for substantial paid family and medical leave. The United States falls way behind its peers when it comes to supporting the people who provide enormous unpaid labor without which people living with chronic illness and disability, or age-related needs, would be unable to live. I was able to care for my mother the way I did because I was able to afford to give up what was, for me, half a year’s salary. Other adult children providing care go into debt, neglect their own needs, and many families experience bankruptcy — and that’s even when they have good health insurance — because of the family-related costs of illness.
Lastly, I advocate for considering less intensive treatment for terminal illnesses. I know it’s hard to face the fact that we are all going to die, but when I saw the misery that my mother lived through in an effort to gain “a couple of years” of life, with long odds at even achieving that, I think that her last weeks or months could have been made much less difficult for her if we hadn’t all been so focused on fighting the disease. Some people point out that the largest health expenditures often come in the last months of life, and that’s true, but I’m not talking about this as a cost-saving measure. I’m taking about it as a life-saving measure, by which I mean saving the quality of life that remains to you instead of focusing on longevity. These are deeply personal decisions, but it takes public advocacy to push back on the default attitude in the US that we should treat everything as intensively as we can.
What are your “5 Things I Wish Someone Told Me Before I Started” and why.
- Medicine is as much art as science, and things you think should be clear and data driven are fuzzy and open to different interpretations by different doctors. This means a lot of medical-emotional whiplash. I remember one day when an intern came in to discuss bone scan results that were part of a cancer restaging, and he told us that the scan showed little reduction in the tumor cells in most areas and a small amount of growth in others. My mom and I were so discouraged. Later, her oncologist came in and said, “Well, this isn’t bad. Only a few places show any growth, and some have even shrunk.” She also told us that bone scans were hard to interpret. Suddenly things looked brighter. Same scans, same day, different doctors. There were so many moments like that.
- Nurses and CNAs are your best friends. So is the discharge planner. If you’re dealing with prolonged hospital treatment, or repeat visits, do whatever you can to be kind to these people. Bring donuts for the nurses’ station or the breakroom. Learn about people’s families. Hospitals are enormous bureaucracies and having personal connections will help you navigate them. When my mother had to be rushed to the ER from a rehab because she’d had a small stroke, the hospital oncologist who came to visit us and manage her admission was one we’d worked with a number of times before. We asked her the favor of trying to get us onto a particular floor where we also knew many of the staff, and she was able to do that. It made a huge difference in my mother’s comfort, and mine.
- Role strain and role conflict are really big deals when balancing caregiver and family responsibilities. See above!
- The rules won’t always make sense, and neither will the person you are caring for. Pick your battles. Break rules judiciously and apologize profusely. Once when my mother was just being admitted to a rehab she needed to use the bathroom. It was too far for me to help her walk on our own, and we didn’t have a walker yet, though she’d used one regularly at the hospital. When the admitting nurse came in we asked her for a walker or help getting to the bathroom. She said she couldn’t bring us a walker until mom had been evaluated by a physical therapist. She asked if my mother would use a bed pan. My mother refused the bedpan and said she wanted to go to the toilet. In the time we spent arguing about the walker and the bed pan we could have helped my mother to the bathroom together. Instead, my mother had an accident in the bed because of a bureaucratic rule and an ill-chosen battle.
- Plan for death before anybody is sick. Personal wishes about death care (and care during critical illness) are pretty difficult for most of us to talk about in the United States, but it’s MUCH harder to talk about when your focus is beating back a disease. Work hard at making conversations about death a regular part of your relationships with your parents, your kids, your partners, your friends. The reality is that we are all going to die sometime, somehow, and it’s better to be prepared.
Let’s jump to the main focus of our interview. According to this study cited by Newsweek, the US healthcare system is ranked as the worst among high income nations. This seems shocking. Can you share with us 3–5 reasons why you think the US is ranked so poorly?
There are so many things wrong with the way health care is delivered in the United States, but I’d say that a vast majority of them can be tracked back to insurance companies. The fragmented bureaucracies, the inefficiency, the opaque pricing, the incentivizing of doctors to focus on procedures instead of on patient health, all of these problems can be traced to the fact that our system is organized by private companies instead of being organized around the unifying value of health as a public good.
My mother had excellent health insurance through her employer and then through Medicare, and when she was diagnosed with a terminal cancer she got the best care that ordinary people get in the US, but let me tell you a story: After her third round of chemo, when we were planning for discharge to a rehab for her to get some strength back before round four, we ran into a situation that is infuriating and unbelievably common: Sensibly, she had to be evaluated by a physical and rehabilitative medicine specialist to determine what level of rehab would be best for her. Then, a representative from the rehab needed to evaluate her to decide whether or not they could accept her. This depended in part on what they thought of her insurance situation. Then, a bed had to be available for her intended discharge date (always a moving target). We got good news: She was accepted by the rehab we wanted. Then we got bad news: her insurance company rejected the doctor’s evaluation. Her social worker helped us file an appeal, and a day later we succeeded, and in our case we lucked out and the bed was still available. By the time she was admitted to the rehab, she only about 10 days before her next round of chemo. Could she stay at the rehab and get her chemo as an outpatient at the hospital while continuing her rehabilitation? No. Why not? Insurance rules. If a patient is well enough to leave the facility for outside treatment, they’re deemed too well to need acute rehab in the first place. And the chemo couldn’t be administered at the rehab, because all meds administered at the rehab had to be provided by the rehab, chemo wasn’t in their wheelhouse.
This illustrates how business-centered instead of patient-centered the organization of our health care system is. Let me give you one other example. Later in her illness, my mother was admitted to something called a Long Term Acute Care facility. She hadn’t been well enough for rehab, didn’t need quite as high a level of care a the hospital was designated to provide, and couldn’t go home. Thank god for the LTAC. It provides an almost-hospital-level of care, but also a bit more physical therapy than the hospital can provide. It was too good to be true, once there, she started to seem well enough for the social worker on her unit to recommend she go to an acute rehab floor, which she did, but right after arriving there she started to show signs of a significant infection. This could not be treated on the rehab floor. Could she go back to the LTAC, where they were equipped to treat this kind of thing? No. Why not? Because insurance rules demanded that a patient could go from rehab to home or rehab to the hospital, but not from rehab to LTAC. From a patient perspective it made no sense. We got a lot of sympathetic nods from actual health care providers, but there was nothing they could do. So back to the hospital she went.
Last, and then I’ll leave the insurance companies alone for a while, because of the way medical billing occurs, too often patients are treated as clusters of symptoms or conditions rather than as whole people with whole lives. If you are at the oncologist for cancer treatment, you are unlikely to be asked about the other problems you are having, any number of which might affect you in concert with your cancer. Some doctors are great at seeing the whole patient, but the system doesn’t make it easy for them to do it.
You are a “healthcare insider”. Can you share 5 changes that need to be made to improve the overall US healthcare system? Please share a story or example for each.
I think I’ve told the stories that relate above, but here’s a short list of changes I’d love to see made:
Single payer health care would cut down on the bureaucracy, make care more affordable, and help rationalize what is now a pretty irrational system.
Substantial paid family and medical leave would ease the burden on families where so much of this care takes place.
Medical Schools could spend more time training doctors in communication skills and in thinking holistically (including sexuality), and in bias reduction (so ageism, racism, and heterosexism wouldn’t be such problems).
Thank you! It’s great to suggest changes, but what specific steps would need to be taken to implement your ideas? What can individuals, corporations, communities and leaders do to help?
Health care is at the center of lots of political debates right now. Talk to your representatives. Support organizations advocating for the changes you want. And have conversations with your friends, colleagues, and family members about issues related to personal needs, fears, and desires around medical care.
Like the feminists of the 1970s taught us, the personal is political. Get involved.
What are your favorite books, podcasts, or resources that inspire you to be a better healthcare leader? Can you explain why you like them?
- Atul Gawande: I love all of his books but Complications was really important to me when my mother was in the hospital and Being Mortal was something I read that made a big difference in how I thought about old age, critical illness, and end-of-life care after she died.
- Haider Warraich’s book Modern Death was, like Being Mortal,something that helped me think seriously about how we treat the dying process and the legal, medical, and family isssues that arise around it.
- Sallie Tisdale’s Advice for Future Corpses and Those Who Love Them has helped me think critically about how to center the experience of the person who is dying.
- The Ultimate guide to Sex and disability, by Miriam Kaufman, M.D., Cory Silverberg, and Fran Odette is my go-to reference book for sex and disability.
- I love the Paula Span’s New York Times column, The New Old Age and the WNYC podcast Sex, Death, and Money by Anna Sales.
- And of course, Woodhull Freedom Foundation — because sexual and gender rights are at the core of health and wellbeing.
How can our readers follow you on social media?
Thank you so much for these insights! This was so inspiring!